Dying Overcome (Part 2)

Chapter 31


I had been discharged on a Monday and the outpatient clinic for Bone Marrow Transplant patients was on a Tuesday so I had to wake up and get myself back to the hospital by 10:45 the next morning. It was a struggle. Again I felt very weak. I was careful to have breakfast and take all my medications, including a tramadol for my headache. I moved very slowly and kept telling myself it was easier than yesterday because I didn’t have a big bag to carry around. I had brought my knapsack but had emptied it so it was light.

I was patient, moved slowly and carefully.

At Module L they insist you wear a face mask but since I have interstitial lung disease I insisted I wasn’t going to wear one. By law I didn’t have to wear a mask. So I suggested I wait in the adjoining waiting room where there was no one. She agreed and I sat there for an hour and a half, barely able to keep my eyes open. I tried to read the news on my mobile phone but my headache was too painful and I was too exhausted. So I just waited. When the nurse finally grabbed me she walked me all the way around the corridor at a very fast pace so when I arrived at the examining room I was out of breath. Thus began the twenty questions about why my oxygen levels were so low. I explained and she didn’t understand but after a minute my oxygen levels returned to 94, 95 and then 96 percent so this very intense nurse was happy.

The doctor came in and asked me a bunch of questions, including where all my family was and why I didn’t have any caregivers. I assured him that I could do it on my own and that I liked the apartment and could fend for myself, but I was aware at how poignant it was. He knew exactly what was going on within me. And how weak I was. But that was it. The x-rays were to be done next Tuesday and he said there was no need to have another blood test because I had had one yesterday and my counts looked good. And he sent me on my way.

I was too exhausted to be mad. But inside I was furious. Why did I have to do all this physical expenditure just to have my blood pressure taken? They took it every four hours for 18 days in the hospital. I could barely make it downstairs to get a taxi. Back at the apartment I napped all day and then tried to find the deep sleep I had had the previous night but realized that the refrigerator in my room was so noisy it kept waking me up. Every hour when it turned on and turned off something in the fridge shuddered so loudly it kept waking me up. By the time I realized I had to take action it was after five and the office was closed. I tried to get through the night but the fridge kept rattling me awake.

It was the same room but it was different fridge. Someone had traded fridges. And deposited a crappy loud fridge in this unit.

In fits I couldn’t find true sleep. At one point I woke up soaking wet with sweat, realizing that I might have picked up an infection or the COVID-19 virus during the day. I immediately changed my shirt and drank lots of water and then tried to sleep again. Until I was again awakened by the fridge. Finally at three in the morning I had to unplug it. It didn’t matter if my food went bad. I had to have my sleep.

Chapter 32


I woke up too tired to even think about walking downstairs to the apartment office to request a new fridge. Luckily I picked up the phone and there was a number there I called. It was Bridget and she was very attentive and within the hour a maintenance man was in my room. I told him of the problem as I sat at the kitchen table barely able to speak I was so tired and out of breath, and so he said he would return with another fridge after lunch. And he did. He replaced the loud crappy fridge with a functional, quiet fridge and left me finally with a safe space to rest and recuperate.

I spent the day eating and resting, finally relaxing and healing. That night I slept well and woke up with strength in my legs. Was I finally reaching the point of self-sustaining strength?

My skin rash was now healed. Where it had been red was now peeling skin like a sunburn. That showed how my new healthy white blood cells were at work. And it was very encouraging. My ankles were back to normal and my hands were no longer swollen, the first time in eight years! And they weren’t stiff! Dr. Huebsch had said that it was a good time to bend and flex my fingers and hands to return them to normal functionality and mobility and so that’s what I had been doing, it was working. I was getting my hands back!

My tongue pain had gone too. For the first time I was feeling better.

I spent the rest of the day on the couch with my laptop, falling off the sleep whenever fatigue hit me. I slept well during the night and woke up refreshed.

Chapter 33


I could feel it in my legs first, my strength returning. It was very noticeable. I knew when I got out of bed that I had turned a corner. I suppose there is a certain base level the blood needs to be at when the body is fed enough energy and oxygen to execute the basic things required to get through a day. I had reached that. I was no longer in the danger zone. I was still not strong enough to go for a walk but I was strong enough to manage my day in the apartment.

My chore for the day was to do more food shopping and I felt up to it. The overwhelming fatigue I had felt on Monday and Tuesday was now gone. It was Thursday. I knew each day that passed my blood counts were returning to normal so I didn’t want to overdo it so I kept things simple.

And this is what I did.

I would only begin walking for exercise when I felt the strength to. I was guarding against too much physical expenditure because I knew I should still be in the hospital because I had been released early. I was just relieved to be out of the yoke of the nasty nurses who poked and prodded me every four hours with their thermometers and blood pressure bags and oxygen level measuring devices. It was glorious and I was letting that joy permeate into my spirit using it as a balm to sooth and heal. These, I knew, were the best days of my new life: quantifiably getting better inch by inch, feeling each increment.

My hair was gone and my beard was gone – everything except for the final remaining hairs on my upper lip and eyebrows. There I had to trim it down to the last standing patch just under my nose and along the edge of my upper lip – very trim number that was reminiscent of my grandfather’s moustache. I felt good in it. Definitely a different look for me but one that I took to and even enjoyed as I went about my day.

And the mucosa had returned to my mouth. This meant that I could now brush my teeth and floss. (With no white blood cells the mucosa that coats the mouth had disappeared, which made brushing a dangerous thing to do).

And it meant that I had turned a corner. I had reached a point of self-healing: when my body was able to heal itself. It was true I had two more transfusions of antibodies to strengthen my immune system and that I was still on anti-viral medications as well as prednisone but these medications were soon to end. And the protocols were in place to ensure a smooth transition back into healthy living. With each meal I knew I was getting closer to full strength and this in turn helped fuel my recovery. It fed on itself. And it was an amazing feeling to have endured the hardships of the treatment to have reached this point.

I should note here that at this point was I taking 22 pills of medication per day. Twelve of them were the anti-viral Valcyclovir that destroys the DNA of any and all latent viruses the human body has at any given time, such as the Herpes Zoster virus that I had because I had had the chicken pox as a kid. My immune system was only brand new and not strong enough to fight off these viruses so these huge blue pills I had to take six in the morning and six at night. Also, I was taking 25mg of prednisone to force the swelling down in my lungs and throughout my body, such as my throat and esophagus and my GI tract, hands, knees and feet. This was five pills a day. The other six pills were for various things. I was also told to take vitamin D to strengthen my immune system. I was also given the okay to take a multivitamin but I had taken a liking to the Boosts multivitamin drink I had been given in the hospital because it wasn’t another pill. And I could get the high protein version of Boost. I had a lot of rebuilding to do.

If this narrative is man-versus-disease, then I think this is the point when the battle is won. The disease is gone and the recovery to full health is well underway. I am aware there are still potential complications and problems that can arise but there is a point when a line is crossed and the body can now take care of itself. And I feel this is that point. It is a long and dangerous treatment but I am a testament to its soundness and effectiveness. To remove the damaged and self-attacking immune system by using chemo and replace it by using self-donated/gathered stem cells to reproduce and replace the damaged white blood cells to renew the body and heal the effects of the disease that ravaged it is a miracle. Perhaps simple – and brilliant – in concept but precarious and fraught with real dangers along the way, the patient must be of good stock, not just physically but mentally to roll with the punches and endure the psychological challenges that are part of the treatment. But if one can indeed endure the bumps along the way, the glorious joy one feels when one is mending from within by their own hand is worth all the turbulence and sacrifice. I could still feel the warmth and healing light within me at all the sore spots in my body – old injuries of the scleroderma. Amazing experience.

What will I do with this new life I’ve been given? I certainly won’t be spending it watching TV. I will be out in the world making a difference and leaving a legacy for others to be inspired to do good things.

Grateful is too weak a word to describe how I feel.

Chapter 34


I listened to my body and rested. I did however go out for a walk but quickly learned firsthand how weak I was still. I walked to the end of the street and then turned around, needing to rest on one of the benches that were strategically located along the entrance street of the Civic Hospital. I sat there for at least 15 minutes getting my breath, worried that I wouldn’t be able to walk the five minutes back to my apartment.

I wasn’t my lungs that were holding me up, it was my system. My blood wasn’t rich enough to supply what was needed to my entire system to negotiate a functional and self-sustaining walk physically. So I was careful to get my strength back slowly.

The next day I repeated the walk to the end of the street, 10 minutes each way and found it slightly easier. I used the bench again to catch my breath. The following day I walked farther and didn’t use the bench and then went out for another 20 minute walk at dusk, relieved to learn that I could feel new strength in my legs.

I was quick to remind myself that I had been let out of the hospital a week early and that technically I should still have been in the hospital. So I fought against my motivation to push it, which I’m glad I did because I still had the PICC line in my inner bicep going into my heart cavity. And it scared me that I could get a blood clot due to the line’s obstruction along my vein/artery in my arm.

So when Monday rolled around and I had my IVIG transfusion in the outpatient clinic at the hospital I was very relieved to hear that I wouldn’t need another transfusion for another month. This got me thinking that I might not need my PICC line in my arm that much longer. Why would they keep it in my arm for a month until the next transfusion of antibodies? They could just insert a needle in my arm and do it the old fashioned way.

Chapter 35


The transfusion went well and there were no after effects, so when I returned to the hospital the following day for the weekly Tuesday clinic, the doctor and I had a robust discussion about my current state of play. My vitals were good – blood pressure and heart rate and oxygen levels, and my blood counts looked good from the previous week’s analysis. This week I was to have a chest x-ray to determine whether I had any liquid in my lungs. And this would determine how quickly I would scale back my prednisone intake. But during this discussion I mentioned that today was the day I needed to have my PICC dressing changed, or perhaps removed. She said maybe and then left the room to discuss it with a doctor who remained behind the doors. When she returned she said I could have the PICC line removed after I had my bloodwork done.


One could just never adjust to anything normal with two ports sticking out of one’s arm with the knowledge that a 45cm line went directly into a deep cavity beside the heart.

I was thrilled and scared at the same time. But I knew the nurse and she was one of the good ones. She took my blood and then proceeded to remove my PICC line, something that was surprisingly not painful. The inner vein/artery has no nerves so when she pulled it out, I didn’t feel it. Just at the entry point I could feel some pain – or perhaps discomfort is the better word. There was a strange ache deep within the vein when she was pulling it out just as she paused from pulling, as if there was a vacuum that is created when pulling out the line. When she finished removing the line I didn’t feel that scary suction within the vein. In fact the line was out before I knew it was out.

What a relief!

I had my body back!

Everything changed after that. For the first time I felt like I was out of danger and had firmly completed my dangerous phase of the treatment during my hospital stay. I was now on the other side of my hospital stay (stem cell transplant) and could now focus on healing and regaining my strength. I was no longer afraid of complications with a line deep inside my upper arm into my heart cavity so I went for walks twice a day. My walks were longer and the number of minutes I walked per day rose significantly – until Thursday.

When I woke up on Thursday morning I was dizzy. I had also slept in until 2pm, which I hadn’t done since the first week of getting out of the hospital. It was a strange dizziness. It was deep and stayed with me long after I had risen and made myself a cuppa tea. Each time I stood up I felt some degree of dizziness. And I felt very weak. So I took a day off from walking, listened to my body and ordered a pizza.

It was the third pizza I had ordered since I had left Ottawa General. I’m not usually one for ordering pizzas but when I thought of ordering a pizza a few days after leaving the hospital I had an immediate reaction: I was salivating. It was intense and I couldn’t shake it so I looked up the local Domino’s Pizza and ordered a large pizza. It was glorious! And I learned something: it is very important to listen to your body. The food I had been eating at the hospital had no fat in it. It was all very healthy stuff. And I knew that my body needed fat. So I welcomed the pizza. I ordered another one a few days after that -two during the first week in the apartment. I had the pizza for dinner and then the other half for breakfast, so it saved me from expending energy going shopping for food.

So on Thursday I ordered a pizza and rested on the couch.

When I went to sleep that night I was starting to worry about the dizziness, thinking it could be a blood clot or something that was stopping the blood flow to my brain. When I got up to have a pee from bed, the strong dizziness was there again. I thought I might have to call the doctor the next day to tell him of this dizziness but would wait until morning to see if it was still there.

I had been having headaches ever since chemo so I thought it might my white blood cells healing the damage the chemo had done to my brain. And then I thought that my lungs were opening up and I was getting more oxygen into my bloodstream so this might be giving my brain more oxygen than normal and thus causing the dizziness, sort of like hyper-ventilating. I had started a new medication on Tuesday – an oral med that was to prevent lung infections but I could feel it working my lungs. It was cleaning them out! The walks became an exercise of me coughing up dead cells from the depths of my lungs, and as a result I could very easily feel the expanding capacity of my lung functionality. (I chose walking routes where there were hardly anyone around so I could cough it up and spit it out freely without worrying a passerby, especially since COVID was still around and everyone was in lockdown).

The dizziness I think was a combination of these two things: more oxygen getting to my brain and my brain being healed by the damage it had had from the chemo – so-called chemo brain. This resulted in my headaches going away. This was a significant development. Without the headaches, and with stronger legs and better lungs, I could feel the whole package coming together into a united whole for the first time in a very long time.

One other thing that had happened was a slight swelling in my neck on the left side. My first reaction to this was that it was a lymphatic issue and thus serious but then I had had a slight discomfort exactly there in my neck for years. I had had to cover that area with a scarf or hat with ear flaps during the winter or else I would get a sore throat. It was also the source of my sore throat that I had suffered from for months during the lockdown, and for the year when I had been very ill with scleroderma. I had developed a superficial itch there that I started to scratch on the Tuesday of the clinic and the doctor had commented on the redness. So I had kept it in mind. The more I thought about it and experienced it the more I realized that it was my white blood cells healing whatever damage had been done there from my scleroderma. The itch was the telltale sign that it was healing. The discomfort that was like a perma-chill or ache in the left side of my neck was gone as of Friday of the second week and I no longer felt the need to wear a hat or scarf to bed to prevent the chill and thus sore throat. Again it was yet another example of my body fighting off the damage of my previous illness, getting my body in fighting shape. The swelling dispersed and the itchiness went away and the discomfort dissipated.

The colour of my skin was vibrant and healthy.

I was healing.

And one more thing happened. My skin began to peel off. First on my arms where I had had the skin rash but then on my feet and in the areas where my skin had been most affected by my scleroderma, such as around the knees and hands and feet. It was another example of my white blood cells shedding a layer of skin to replace it with a healthier layer of skin. It didn’t hurt. It was just amazing to see that in each place where the skin peeled were the problem areas I had had with my scleroderma.

And while I’m addressing my skin I can say: my skin was softer! I could pinch my skin for the first time in years. When I began wearing my watch again it fit differently on my wrist. The skin was normal and the watch didn’t fit as snugly as before, which was good because I had had a problem with my watch constricting my wrist area because the skin had become too hard and swollen. I could see a bit of a double chin too, which was cool! I didn’t care. The collagen under my skin was being eradicated. I had expected it if this treatment had worked. My hands were more wrinkled because the swelling had completely gone. And my fingers were back to normal – flexible and lithe after being stiff and hard to coordinate. Even typing this my fingers are loose and I’m in need to change my typing style ever so slightly to compensate having normal, flexible fingers again!

Even when I had my PICC line removed I still had a worry about possible infection so when the nurse had covered it with gauze and a waterproof bandage I was instructed to keep it like that for two days and then removed the bandage. After the two days I was freaked out even going near the gaping hole in my inner bicep but forced myself to peel off the bandage near dinnertime on the second day. I kept having images of the scab peeling off with the gauze and opening this huge deep wound that led directly to my heart but when I peeled it off the gauze disconnected from the scab and I was left with a very safe and healthy looking scab. It was deeply set in the 2mm hole in my arm. There was dried blood around it from when the nurse had pulled out the line but there was no redness around it and no pain so therefore no infection.

I was so terribly relieved.

I let it air out for the rest of the day as I lay on the couch, even cutting off my t-shirt sleeve so it wasn’t hampered. When I finally went to sleep I put on a bandage because I knew I would be rubbing it against the bedsheets from sleeping on my side – something I loved to do now that my PICC line was out! Upon waking up the next morning I removed the bandage and the scar looked even better. I could finally close the chapter on the PICC line and focus on my physical therapy for a full recovery.

Chapter 36


With the PICC line out and the opening scabbed and healing, I felt I was reaching a new level of recovery. I disciplined myself to walk at least once a day, trying to go farther each time but one thing I was noticing was my breathing. It felt like I had a belt wrapped around my lungs. Physically I was getting stronger but my lungs were holding me back.

One day, on Saturday July 4th, I had to walk to the bank machine to do some banking. It was sort of within range if I could find a patio to have a cuppa tea to recover before walking back. And I had identified two places where I could sit and catch my breath. The point was that I needed to do the banking so I took the chance.

Walking there was all right although the final stretch to Wellington Avenue was a challenge. I simply reached the limits of my breathing. I tried hard to expand my lungs to get more oxygen in but I couldn’t. I was close to stumbling by the time I made it to the bank. Fortunately there were several patios close by to choose from. Before I had left my apartment though an old friend had called and we had spoken for several hours, with me drinking five or six cups of tea, so I didn’t feel like drinking more tea. I did however see an Irish Pub with a patio that was open. I sort of stumbled in there red faced and ordered a pint of Guinness. I caught my breath in the shaded patio and before I could help it the waitress asked if I wanted another pint, to which I said yes. I immediately paid my bill so that I wouldn’t buy a third pint. I took my time drinking them, becoming more aware of the potential danger I had put myself in. I hadn’t drank any alcohol since Christmas and with my blood counts still trying to get back to normal, I’m sure the alcohol was having difficulty being digested properly.

And it was 90 degrees Fahrenheit outside.

So I started to walk back to my apartment and immediately noticed how weak I was. I tried to take a deep breath and go slowly but I found it very difficult. I made it to the church (my first stop where I could sit in the shade) and then rested there for fifteen minutes. On the second leg of my return journey I really felt weak in my legs, barely making it to the bench beside the Civic Hospital where I lived. I sat there for another fifteen minutes, and then sauntered back to my apartment, clearly exhausted and a bit scared. I hydrated and ate and proceeded to sleep deeply for the next few nights.

It was a reminder of how far I still needed to recover to any semblance of normalcy to function even close to average standards.

I was still taking 22 tablets of medicine each day and wondered if the medication was giving me the headaches I was suffering from. And it is a lot of medication to process for a weakened body. So when I went in for my weekly appointment on Tuesday, I asked all about my meds. Yes, I was to take the majority of them for 100 days. She explained how important each one was to ensure I didn’t suffer from any infections during this recovery time. But my prednisone intake at 25mg had had me confused for quite a while. It was to keep the swelling in my lungs down. But it was used when I stopped taking my anti-immune medications in December. I increased my prednisone intake after leaving the hospital in January and it was supposed to be temporary, only to be extended due to COVID-19. I was taking 50mg for a while, and had tapered off to 45, 40, 35 and then 30mg in February. It was explained to me that it was necessary to keep my lungs from swelling up. I understood and appreciated this since I wasn’t taking the anti-immune system medication that would have stopped the swelling. Going into the hospital the doctors kept me on my 30mg intake right up until I had my transplant. And then after that they put me on 25mg. This was to ensure my lungs didn’t swell up during this crucial period of seeing if my scleroderma disappeared. Once my white blood cells began coming back and healthy, and seeing my scleroderma symptoms disappear, I still was kept on the prednisone.

Week after week I kept taking the steroids as if someone had forgotten to stop it.

I had long thought the prednisone was causing me discomfort. Firstly my heart. My heart rate had always been normal but since taking the prednisone my heart rate had become high. When I went walking my heart rate was very high. Also, understanding that its prime function was to decrease swelling, I knew that it closed down the lung tissue. Soon I was beginning to think that it was the prednisone that was the belt wrapped around my lungs during my walks post-transplant. So on Tuesday, after seeing my lungs were clear from the previous week’s x-ray, my prednisone intake was decreased to 20mg. I immediately felt the difference. In fact this 20 percent decrease hit me like a ton of bricks. I could hardly keep my eyes open all day. I had two naps and was way too tired to go for my walk. I slept for 14 hours that night. The next day I had to go shopping for food so I walked the 30 minutes to the food store and noticed right off the bat that I could breathe better.

The prednisone had been closing off my lungs!

And my heart rate wasn’t as high.

I had been very overdue for my prednisone intake to be decreased. And my intake was planned to diminish more this coming Tuesday down to 15mg. Moving in the right direction! And with my lungs now expanding more my breathing capacity is bigger. Walking is easier. And it all contributes to a more robust recovery.

It took a few days (3 or 4) for me to adjust to the new amount of prednisone. I became very fatigued from the decrease, which makes sense because steroids make your heart beat fast. But once I had adjusted I tested my lungs and found them looser. If before my lungs could be described as having a belt wrapped around them, then with the decrease in prednisone it was like someone loosening the belt. I was able to ride on my mountain bike for the first time and it was in 36-degree-Celcius weather. I rode for 30 minutes and could have ridden longer. It was my shoulders (upper body) that fatigued first. So that was a big psychological boost for my recovery as it symbolized the beginning of a new phase of recovery.

Two days after my bike ride I went for walk and felt my lungs to be in very good condition, as if the belt had been loosened further. Up to that point I had only been able to walk 40 minutes at one time but with the prednisone changes I felt strong enough to walk farther so I changed my course and walked non-stop for 60 minutes. One hour. I had been out of the hospital for three weeks though taking into consideration that I had been let out of the hospital a week early and that all I had done that first week is eat and sleep, I was very pleased with the achievement. Like most of my walks, after I came back to my apartment and relaxed it was the time I coughed up gunk from my lungs. It was a good time for me to empty my lungs of dead cells and clear them out so they could heal.

This is what I repeated throughout the week. And I grew in strength. And I kept on thinking about the time I was in the hospital and I could hardly walk from my bed to the bathroom ten feet away without being out of breath.

Also my skin continued to peel. First on my arms and wrists and then on my hands and feet and now around my neck. And this caused me to think a lot about my state before I had my stem cell transplant.

Whenever I spoke to friends or family on the telephone before my transplant I always told them to excuse my voice because it was a “few octaves higher than normal.” I always attributed this to my steroid intake. My face (cheeks) was puffy from the steroids (the so-called moon-face) and my intake was 30mg per day. After my transplant I was given 25mg per day. The first thing I noticed after my stem cells engrafted into my bone marrow and began producing white blood cells was a funny feeling in my neck right in the places where I had been having pain. This continued for weeks. Instinctually I could tell I was healing – that it was the white blood cells healing badly affected parts of my body from the scleroderma. There had not been a lot of discussion or diagnoses of my esophagus prior to my treatment because it was difficult to determine whether it had been negatively affected by my illness in that area. Other than skin, joints and lungs, the esophagus and its musculature are the main areas affected by scleroderma so that in time the patient loses control of their swallowing and ultimately suffocates.

And because of this I tried never to think about whether my esophagus had been adversely affected.

Whenever I breathed in deeply I would swallow involuntarily, which told me I was affected. How much I had been affected I didn’t know.

So now a few weeks after the stem cell transplant I began to notice when I was speaking on the telephone that my voice had returned to normal – that it was no longer a few octaves higher than normal. Yet I was still basically on a high dose of steroids. My conclusion now is that I was a lot sicker than I realized, that my esophagus had been infiltrated by my scleroderma and was making me very sick, negatively affecting how I swallowed and how I spoke. My esophagus had been swollen and therefore was more closed than normal thus creating my higher voice. And now in the mirror I can see parts of my neck where the skin is peeling, another illustration of how my white blood cells are healing all the badly affected areas of my scleroderma.

Dr. Atkins saved my life. The treatment saved my life. I am so forever grateful and so full of gratitude it’s overwhelming.

Before the treatment my neck was skinny and stiff. Now my neck is wider and loose. It now looks in proportion to my big hairless head. My pencil neck is gone. Every day that passes I get stronger and healthier. It’s a great feeling.

Chapter 37


The previous week’s visit I had asked the doctor about the 22 tablets of medication I was taking per day, and asked her if it was all necessary. I asked her how far along I was in terms of my immune system strength. I suggested 50 percent. She laughed.

“No, no. You have a long way to go. It strengthens slowly and you need antibodies to help you ward off infections. That’s why you still need to isolate and be careful how you interact with others.” She said it takes up to a few years to get your immune system to one hundred percent. And she said: “Each of the medications you are taking is paramount to your survival. One was an anti-fungal medication that fought off any form of fungus. And the other medication is an anti-viral medication that wards off any dormant viruses hiding in your body that might reactivate due to your weakened state. One is for your stomach and one is prednisone that keeps your lungs from possibly swelling. And the oral medication you’re taking is to prevent any lung infection.”

“The one that cost $651.” She smiled.

“Yes, that one.”

“And that brings me to the prednisone. Your x-rays looked good so we’re decreasing your prescription.” And so it went.

But she did communicate to me just how important all the tablets I took every day were to my health, and that I still had a long way to go. My focus was on each day doing my little bit to get healthy by eating well, exercising within my means and taking my medication. I had to trust to process. The protocols had worked so far so having patience during this anchor leg of the procedure was just as important as having the right mindset during the engrafting and stem cell transplant, as well as the harvesting of my stem cells in the first phase.

My appointment went well. My blood pressure was normal and my heart rate particularly had decreased back to the normal realm of roughly 73bpm. The doctor said I had been lucky to not have had any complications and that all my blood counts were “healthy and strong.” And then she said the best news I could have hoped: “Today you can decrease your intake of prednisone by 5mg, and then again next week by the same, assuming you don’t have any issues.”

Sure enough the first day I decreased my intake of the steroid, after having been on steroids for nearly eight years, the fatigue I felt was extreme. I couldn’t even sit on a couch and read from my laptop. I had to have a nap, which I did. I didn’t feel sick, only extremely tired. I felt it in my heart too. There was a sort of relief sensation in my heart, as if an over-revving engine had finally been relaxed by taking something off the gas pedal. And most of all was when I woke up the following morning my first breath was amazing. The belt I had felt wrapped around my lungs for so long had been loosened significantly so that I could breathe easier for the first time in a very long time. Psychologically it was a huge step in the right direction.

Now, all I really needed were the monthly antibody transfusions – four more after the one I was to get in two weeks. And also to finish off my medications. But with the decreasing of the steroids I was stepping closer and closer to a healthy body that could be self-sustaining in its pursuit of good health.

The doctor said that I didn’t need to see her the following week because I was doing so well so my next appointment was for two weeks hence.

I looked forward to longer walks and now riding my mountain bike. It was the heart of the summer in Ottawa after all.

And it was while riding my bike that I most noticed the change in my lungs. When I first started riding my mountain bike I would be breathing heavily after the first few minutes and try to manage by breathing deeply. After a couple of weeks when I went out again (I took a long break from riding my bike because I didn’t feel strong enough) I noticed that I was breathing normally and yet riding for much longer than before. All the coughing up of dead cells and phlegm had paid off in the recovery of my lungs. I think by expelling the debris in my lungs my new healthy white blood cells were able to get in there and heal the millions of little breathing portals that had been negatively affected by my scleroderma.

It was an incredible moment because it was the first concrete example or indication that my lungs were in fact improving. Granted I feel the belt has been loosened around my lungs, they still felt constricted. Now they feel less constricted and more efficient translating oxygen into my bloodstream. This is what everyone was hoping for: to see if this procedure/treatment would enable the healing of my lungs. Or whether I would be disease-free but be crippled with scarred lung tissue. Or worse: free of scleroderma and yet still left with a progressive and fatal lung condition. Apparently the odds were 33 percent: one-third chance of no more scleroderma and lungs that would stabilize; one-third chance of no more scleroderma but still with a progressive fatal lung disease, and one-third chance of still having scleroderma as well as the lung disease.

Yesterday’s ride proved there had been progress.

Tomorrow I have an ECG test at the hospital that is part of the medical protocols of the treatment. No bloodwork required and therefore no needles. For this I’m relieved. And I’ll treat the day as an adventure and see how far I can meander around the hospital and hospital grounds without getting out of breath.

Next Tuesday I will be back at the clinic for a check-up. Hopefully some of my medications will be tweaked, such as decreasing my prednisone intake. I decreased it once again a few days ago and yet again noticed the immediate fatigue associated with this move. Yet I know it’s a step in the right direction to calm my heart and loosen my lungs. It’s incredible to me how strong some of these medications are.

Hopefully next Tuesday the anti-viral medication will be decreased because I am currently taking 12 pills per day!

For the remainder of the two weeks between appointments at the clinic, I went for an echocardiogram. It was a test to check the musculature of my heart and was part of the protocol. I will hear at my next appointment the results of the test.

My focus during the two-week stretch between clinic appointments have been on walking and cycling. I have noticed that the harder I push during a walk – both speed and length of the walk – the more likely I am to have a coughing fit once I return to my apartment. While it is very unpleasant I soon realized that it is the lungs’ way to expelling the dead cells. It was the body’s way of healing by getting rid of the debris within the labyrinth of lung tissue to make way for the healing of new cells. So I engaged this kind of physical therapy in earnest, both walking and cycling on my mountain bike.

The danger is getting the coughing fit near the end of the walk or cycle outside, where people can witness it, especially in this era of COVID-19. It’s embarrassing but I know it’s healthy yet harsh way of getting better.

And so it’s been going. I finish my walk and then spend the next 30 minutes violently coughing up phlegm. But I have noticed that at night my breathing is getting better.

And in the mornings I go through a similar though less violent coughing fit, expelling the debris within my lungs from the night.

At the end of this past week I have less to cough up. My lungs hurt – they feel bruised – but I think that’s from the white blood cells healing the damaged cells. At least I hope so. I can only try to get better and follow my instinct.

Tomorrow is my next appointment at the clinic and I will ask the doctor about this routine – or cycle. And what I can do about it. I think I will be told that coughing up debris from my lungs is a good thing.

Chapter 38


The doctors are happy with my progress. And they are ambivalent to change anything in my protocol to disrupt my recovery. This was the main message I heard today from my doctor.

This meant no changes to my medications nor any other changes. I asked about my lungs and he said they would take a long time to recover and that I shouldn’t expect anything too soon. I wasn’t sure if this was his way of saying that my lungs may never recover so I asked him and he stated that the evidence is mixed. Most patients do experience an improvement of respiratory functionality but most also do not experience a full recovery. There might be too much scar tissue. It’s a wait-and-see situation. He assured me that the coughing up of debris was a good thing and to be patient.

So I continued with my physical therapy with long walks and mountain bike riding and I experienced the same cycle: violent coughing just after completing the physical expenditure, sometimes even during the physical exercise. And during this era of COVID-19 it makes for some uncomfortable moments. People stare at me like I’m infected with the virus so I strategically do my exercise in remote or isolated spots in Ottawa. For example I cycle in the agricultural lands near Carlton University and if I feel the mucous obstructing my air passages I ride to a remote corner of the field and stop to cough it up and recover my breath. Also walking too: I will stop and take out my mobile phone and write text messages to friends to pose as a reason why I’ve stopped walking in the middle of the sidewalk. I stand there for five or ten minutes until my coughing stops.

Terribly uncomfortable.

But I have noticed that after another week of this my coughing fits are subsiding! After my walk/ride my violent coughing has been downgraded to just mild coughing. I am still religious with how I spit it out into a garbage pail I have handy beside my desk and I’m thankful I do not live with anyone as it would be very annoying to hear that coughing and spitting every day. But I do feel like it is no longer a bottomless pit – that all the coughing up of debris is clearing out my lungs making room for my healthy white blood cells to heal. This is good because there were a few days just before my last appointment when I began to lose hope and this I think is very dangerous. I realize that I am still very weak and that I shouldn’t be impatient with my recovery.

I had my antibody infusion on August 4th in the chemo outpatient ward. It was no problem, and was the first time I had had the infusion without my PIC line. The needle wasn’t a big deal and the antibodies didn’t give me a reaction like before so it was all good. I walked out of the hospital with more antibodies and a stronger immune system. I was booked for more transfusions at the beginning of the month of September, October, November and December. And then that would be it. (Actually, my monthly antibody transfusions would go until June, 2021).

But later that day I fell into a deep sleep in the afternoon and felt very weak. I slept late the next morning but did manage to go for an hour and fifteen-minute walk the next day but I had another epic 12-hour sleep that night. I hadn’t realized how much the transfusion affected me. But I didn’t feel bad or sick, only fatigued.

And so I forge ahead with walks each day or a ride on my mountain bike, careful not to overdo it. The warm summer weather is inviting and asks me to take advantage of it each day so I find myself curtailing my walks or rides to remain within my limits. And each time I cough up mucous and further clear my lungs. Progress is slow but I am progressing. And it makes me realize just how ill I once was. It’s encouraging that I am now on the other side of the treatment and that everything I’m doing now is contributing to my regaining full health. I sometimes feel tightness in my chest (heart?) but after my echocardiogram I had two weeks ago I am confident that my heart health is solid. It might be the left side of my lungs that I feel the discomfort. Or somewhere in my breastbone from a lack of stretching.

The doctor said he would schedule a lung test with the local respirologist at the hospital to get a new reading on my lungs. While I really dislike these lung tests I am very curious to see how much my lungs have improved since my last lung test just before I left for Ottawa in December 2019.

One significant event in my recovery happened just the other day. In the morning when I was about to get out of bed, I rolled onto my left side and then began to cough. I coughed and coughed and kept on coughing up gunk for 20 minutes. I know from past x-rays that it was my right lung that was more infected by the pneumonia, so as I coughed I realized that gravity was clearing out my right lung from dead cells and the debris of past infection. I could have turned onto my back or to my right side but I wanted to cough and get that bad stuff out. And I’m glad I did. The same thing happened but to a lesser degree two days later except it was at night. I was lying on my left side and began to cough. I waited it out and man did a lot of gunk come out.

And since then I have not coughed. Once.

I even remember the very last cough: it felt like I finally had coughed up the very last of it that had been buried at the bottom of my lungs.

The new feeling in my lungs however was strange. Instead of feeling like I had a belt tightened around my lungs, my lungs now felt clear but different. After a few days I realized that it felt like I was missing part of my lung! That expression: “I coughed up a lung,” has some truth to it. I fear now that the damage to my lungs has been permanently done and has resulted in decimation of lung tissue. This was why I asked to see a lung specialist.

Chapter 39


I had a call from a doctor arranging an appointment to have a lung test on September 7th, the same day I go into the hospital to get my fourth last antibody transfusion. I should also be getting a phone call to have a CAT scan on my lungs as well as to arrange an appointment to see a lung specialist.

I feel it is now time to seek expert treatment to perhaps save my lungs and increase my breathing.

I am still being very diligent with my walks and bike rides, and feel my breathing is much better than it was before. I no longer fear being hit by a coughing fit like before. Yet I am still very aware of the precarious situation I’m still in: two months out of the hospital and still taking 22 pills per day, including anti-viral and anti-fungal medications. My body is still weak and needs these medications to help fight off dormant fungal or viral infections I harbour in my body. And I’m still on prednisone.

My doctor said she is worried that if she stops the prednisone my lungs might swell up so she will seek the advice of a lung specialist.

I cannot wait to stop taking the steroids as they are wreaking havoc on my body, including my veins, my heart and my liver. I learned during my stay at the hospital that it is the prednisone more than any other medication that destroys the venal system of the body. And I need my veins because they are still taking blood tests from me every two weeks.

I was reading recently that there exists a medication that repairs damaged lungs. This interferon is a protein-based medication that helps heal damaged lung tissue so I’m hoping the lung doctor will prescribe this so I can help my lungs fully recover.

My doctor and I agreed that I will stay in Ottawa for the full 100 days of outpatient treatment. I have my third-last antibody transfusion on October 7th so I’m free to leave after that day. That’s six weeks away and will be almost exactly 100 days.

Chapter 40


This past week I have taken a turn for the better. I’m not sure what has caused the change in my health but it is noticeable. It might be from the change in protein shake I bought, or it might simply be time. Since it’s almost exactly three months from the procedure, maybe my improvement is from the time that has passed. I feel stronger. My skin is back to normal. My arms feel strong. My skin is still loose and my hands and fingers don’t have any pain.

I still suffer from esophageal constricture and damaged lungs but even these seem to be a little better.

My walks are longer but I still have difficulty with stairs, hills or running. My feeling now is that my new post-treatment life will be free of rheumatoid arthritis but will have new boundaries, narrower than before but with the knowledge that these ‘injuries’ will not grow worse. I don’t think I will ever be able to run again.

The doctors are happy with my progress. The last appointment I had at the clinic I didn’t have to do any bloodwork. It’s good because my veins have sustained a lot of damage from all the needles extracting blood for tests.

I have my fourth-last antibody transfusion on Sept 8th as well as a lung test, but more importantly I have a scheduled appointment with Dr. Atkins the following day on the 9th. It will be the first time since leaving the hospital that I will see him. (He is a very busy and in-demand doctor). And I see that it is exactly three months to the day since I had my stem cell transplant. The doctor I saw last Tuesday said Dr. Atkins meets with patients only when they are ready to leave treatment, so I will keep my fingers crossed I will be allowed to leave Ottawa for home after more than eight months here.

I am walking two hours at a time now, which shows good progress from three months ago.

My medications are also decreasing now. My 22 pills per day is now, as of today, down to seven pills per day, and I see next week will be down more. For the first time I can see the finish line. And it is scary. I have many questions for Dr. Atkins because my focus has been just to survive the treatment and do as well as I could to heal, giving very little thought to how my life will be afterwards.

I need to know what dangers exist in this new life of mine. Can I get scleroderma again? Will my lungs get worse? Is my health back to normal again but with new physical limits?

All I know is that I feel different. This entire experience has made me stronger and reminded me of who I am and how fragile time is. I feel motivated to seize the day and accomplish goals that have remained half done for years, and perhaps even take a new turn in how I live my life in terms of where I live and what job I have. I want my time to matter.

The first thing to go is my television.

I will carry on with the rediscovered well of discipline that has carried me through my recovery and apply it to my new life. I will always remember how Dr. Atkins saved my life and how trusting in his expertise has given me another 40 years to live. Whereas before I tried to enjoy the most of each day, from its quiet moments to living fully, now I look at time differently. I have brushed death’s door and have seen how fragile health can be so for me it is more than enjoying each moment of the day. Now I want to go out into the world and get what is mine with no more excuses that there was not enough time.

Now I want to be doing something rather than sitting back.

Now I am no longer dying each day that goes by, which has hung around my neck like a noose for the last eight years. Now I have life force that pumps through my veins and a new immune system that will be 20 years old when I’m 73.

I again have longevity to look forward to.

Before I would have written a journal like this and not published it, but now I think I will. It was my aim to provide a roadmap and insight to those who were about to go through a similar medical treatment as I went through, so that they might have something that will help them see through the experience. I wanted to share the dangers of chemotherapy and the dangers of a bone marrow transplant for those set to do the same.

I also wanted to leave a testament to how the human body can renew itself through the power of self-healing and offer hope to those who suffer from disease. In my case I had a fatal and incurable disease, but now I am cured of the fatal disease but left with scarring in the lungs and esophagus. To be blunt, I can live with these afflictions. And I can hold them as a reminder to how close I came to death and how my life now has more meaning than before, and that I want to offer something to others to help them get through trying times.

I look at myself now as a World War One war vet who has suffered lung scarring from the mustard gas in the trenches.

I find myself making this journal entry with a new mindset. No longer am I completely focused on fixing myself and surviving. I am now focused on resuming my old life and making fundamental changes for the better to adapt to my new vital force that is now spurring me on to tackle more new projects and achieve new goals.

Is this my last entry in this non-fiction journal? Perhaps, though I think I will make one more entry after seeing Dr. Atkins. Sort of like the period at the end of the sentence, I need above all else thank Dr. Atkins from the bottom of my heart for saving my life. His guidance and wisdom and courage to get me into the treatment has literally saved my life. And in return I will offer him this document as feedback and a positive empirical account documenting his treatment and how it had an impact on me.

I think Dr. Atkins is a rock star. I keep thinking about throughout history a person who extended life to another was given Godlike status. People who give to others have good karma, but for those who save other people’s lives, they have great karma. So I want to highlight what a fantastic life he has – the power of giving more life to those who are dying. Dr. Atkins will have a smiling God when he steps through the pearly gates into heaven. What a life he is living!

And I am one of the few who has left a record of being saved by him.

Chapter 41


Having just finished my final appointment with Dr. Atkins I feel it is time for an end to this record of events. In a word, my doctor said that I have healed up fine and my treatment has been a success. But there is still more to do over the next nine months, which will take me to the one year mark and the time when my immune system should be back to almost 100 percent.

My medications have been slashed down. There are a few I will continue to take, such as the liquid antibiotic Mepron that protects my lungs against illness (the fungal pneumonia I had nine months ago). I will be going for bloodwork once a month for the next nine months and I will have a video chat with Dr. Atkins in six weeks. My antibody transfusions will go on until June 2021, once a month and I can do that at the local hospital where I live.

Eight and half months was a long time yet the protocols held up. In my unique case of this treatment being delayed by the COVID-19 lockdown actually gave me time to recover from the pneumonia I had in January. I had to work hard to build my strength before the transplant but it was worth it. My scleroderma is gone and I only have the scarring left from that deadly disease. If I work at it I can recover more of my health, but most of all I will need to protect my lungs from any future illness. Otherwise I will have good health and a normal lifespan.

My final meeting with Dr. Atkins put a period at the end of the sentence of my treatment. With everything medically going well, it was a time for us to catch up and for me to ask questions and finally thank him for saving my life.

When I first met him he said: “Wow, it’s good to see you looking so healthy, and strong.” It had been eight and a half months since I had arrived January 1, 2020.

“It’s been a long haul, hasn’t it?”

He gave me a spontaneous oxygen level check and it was 95 percent. That was better than when I went into the hospital after my airplane ride and my oxygen levels were 75 percent.

“Well I’m very happy that your lungs are getting better.” I told him they were feeling better. When I asked what I could do to heal them he said I should keep doing what I’m doing – the physical exercise puts demands on the lungs and that’s how they’re improving. The physical aspect of recovery was crucial in helping spur on healing.

When I ask him what health issue I should be keeping an eye open for he didn’t hesitate to say my lungs. Everything else he said was better, but it was my lungs that had “no reserve” to fight off any infections so I needed to protect them. Come a year, my immune system should be close to 100 percent and so any time after that one year anniversary my lungs should not be any more vulnerable than a normally healthy person with healthy lungs.

“We have achieved our goal,” he said. “We have got rid of the scleroderma and it has left you with scarred lungs and esophagus. But the cause of that damage has been removed.”

I asked him if I could ever get scleroderma again. Yes, he answered. Some patients have had their scleroderma return, whether it be because there was another trigger or if the white blood cells didn’t go into the negative enough to create a fresh, new immune system.

I then asked him if my lung disease and esophageal constricture would get worse. He said he didn’t know but that usually they get better over time with physical exercise.

His answers were very earnest and honest and they scared me into dedicating my time to a regime of physical recovery for the next nine months to try to regain my health as close to normalcy as I could before too much time passes and healing because less likely.

Dr. Atkins said I shouldn’t look at returning to work for at least six months. He was very clear in his eyes when he looked at me and said this.

With my medications cut down by 80 percent and with no complications from the transplant, there was nothing more Dr. Atkins could do.

After eight and a half months I had come to totally trust Dr. Atkins. This was the man who had fought for me to remain in treatment during the COVID waiting phase. He argued for me to stay for the stem cell transplant and that I would become strong enough to resume the treatment after my bout with pneumonia. The other doctors said it was too high risk for me, that I would die or suffer serious side effects from the procedure. And that was why Dr. Huebsch dropped by every morning during my treatment in the hospital to see how I was progressing. They all knew going into this treatment with bad pneumonic lungs was very high risk but by allowing me to undergo the full transplant they were richer now in their data as to new greater limits for those who will follow with this treatment.

I said that to Dr. Atkins – that I know he fought for me to stay in the program and that because of that he saved my life.

I couldn’t help the tears.

There aren’t many people who have ever lived that can say they save the lives of individuals every month, all year, all decade. I will always be indebted to him and pledge to dedicate my new life to making a difference, and not wasting my time. And yes, I wept when I thanked him for saving my life. I tried my best to speak through it and he smiled at me, very happy to hear those words because he knew how close to death I truly was.

“We have done everything we can, so now you see your respirologist in Toronto and your family doctor in Gore Bay moving forward. If you suffer anything suddenly go to the nearest emergency room. Do I make myself clear?”

“Yes. Very clear.”

“Continue with your lung healing and you should be okay.”

“A normal lifespan?”

He laughed. “You’re asking crystal ball questions!” Yes, I was. “I can’t answer those for you. But you should be fine. Just stay healthy and eat well.”

“Will do.”

“Just like you’re doing with your hands. Stretch them out. And they’ll continue to get better.”

And that was the thing ultimately: that healing was a two-way street. It was both the white blood cells and the magic ability of the human body to heal itself as well as the physical effort of strengthening and stretching the body into healthy form that created the best end result. Facilitating nature’s healing force opened the doors to full recovery and a good diet and lots of sleeping. One can survive four days of chemo and eight days of zero white blood cells after a stem cell transplant if they can take it segment by segment and not all at once. The scope and aggregate pain and discomfort would cause you to conclude it wasn’t worth the effort otherwise. But with the promise of more life at the finish line the question of whether to undertake the stem cell transplant to get rid of my rheumatoid arthritis was always a forgone conclusion: to cure my fatal disease and give me a second chance at living a normal lifespan was worth any pain or discomfort. And now that I am at that finish line and I am about to return to my home on the Great Lakes I am filled with hope and confidence in the future.

Now I can return to living a normal life and make life decisions based on a normal lifespan.

I hope this non-fiction account of my medical journey inspires others who might undergo the same or similar medical treatment in the future. For me it happened on two levels: one was the transformation of my physical body, from weakened man with bad lungs and bad hands to a bald man with better lungs and strong hands, and the second was on an academic level. To follow the cause and effects of each medical event and how the protocols fight the disease step-by-step was a fascinating aspect of my experience. While my understanding was not as serious as the doctors, my layman’s understanding of my medical journey made it all palpable for me. I felt privileged to use my body to prove the protocols true.

So now the three months is up and it’s time for me to re-engage with the world and people while at the same time protect myself from the coronavirus and take time to fully recover from my transplant. It would be more of a life compared to my protected existence in the apartment beside the Civic Hospital in Ottawa. Life was simple and safe and clean. But one things is for sure: I will be moving from a city to the country and from a place where there are COVID-19 outbreaks to an island without any cases of the virus.

I will be going to a refuge to recover.

To immerse myself in nature I would be strengthening my immune system, by walking among the trees and the water’s edge. And so this is what I will do as I walk my dog in all the special places on Manitoulin Island.


Chapter 42

OCTOBER 1, 2020

Now back home and a month later, I am feeling stronger than ever. Having just had an e-appointment with my respirologist he said my lung recovery was “incredible.” He said that scleroderma makes skin harden but also the chest wall and that was the reason for my interstitial lung disease. Seeing his reaction was a special experience for me because it made me feel like this treatment was covering new ground for these experts. Being a man of some renown, I don’t think he had ever worked with a patient who had significantly recovered from pulmonary fibrosis. After finishing the interview, I went for a long walk and concluded that the single most important aspect of my recovery was my walking. The forced use of the lungs when recovering was like lung yoga – the physical forcefulness of putting the lung tissue to work helped loosen the tissue and thus encouraged regeneration on the cellular level. In other words, if a patient were to undergo what I went through but had not spent an hour or more per day, six days a week walking or cycling, then their lungs would not have recovered as much as mine.

Even being home now and living in the country I can feel my lungs improving. Granted there is much more oxygen in the countryside with all the lush foliage around, I can feel it in my breathing capacity. And the telltale sign of interstitial lung disease with scleroderma is when after you take a deep breath your esophagus contracts involuntarily. This no longer happens. And it’s only been less than a month since I left Ottawa. I’m still breathing hard when doing gardening or walking up stairs, but my physical exercise is getting longer and instead of just an hour hit a day, is now a few hits per day. I still feel fatigue but not as much as before.

And I have tremendous colour in my face. I look like a man with a brand new immune system. Put it this way: I am the opposite of pale.

And the stiffness in my hands is lessened too. I can close my fist completely now.

And the slight swelling on the left side of my neck has gone. For a period of time after I decreased my prednisone intake from 10mg to 7.5mg most of my muscles twitched. This went on for a few weeks. Significantly the twitching also happened in precisely the same place where I had had my sore throat for months prior to the stem cell transplant. When I drove the rental car back to my house on Manitoulin Island from Ottawa whenever I checked my blind spot I could feel the stiffness in my neck. In fact one could say I moved my neck like an old man. Today driving all that stiffness was gone. I could turn my head without stiffness fully.

One development though is the muscle pain I’m experiencing. Every single muscle in my body hurts. Walking up to my bedroom and especially down the stairs in the morning is a very ginger exercise for me right now. I’d like to think it’s because I’m beginning to move around more and using more muscles rather than just the simple mechanics of urban walking, but after spending a half hour stretching on my yoga mat I can feel the pain decrease. The hardening of my skin must have had a stiffening effect on my muscles so stretching will become part of my daily routine henceforth in order to limber up and decrease muscular pain.

After worrying about surviving this treatment for so many months (nine), today I had the realization that I was no longer facing a live or die scenario – that I had in fact gained my good health back. Yes I still have monthly antibody transfusions for the next six months but I am functioning at a level that is no longer weak.

Also, I bought a wristband that is a health monitor that measures my heart rate, blood pressure and oxygen levels. And any worry I had about low oxygen levels is over because I’m measuring between 95 and 99 percent. My blood pressure is normal but my heart rate is higher than I would like at 72. It should decrease a little bit with more exercise and once I completely stop the prednisone.

So the biggest thing today, and the reason for this late entry, is the realization that I no longer swallow involuntarily after I take a deep breath. But most of all it was the lung specialist’s honest surprise and joy to hear of my recovery – and the look on his face. He was genuinely happy and surprised. He said there was no need for me to have another lung test for now and that I should just continue what I’m doing. I have most definitely turned a corner.

And I deserve a pat on the back!

Chapter 43


My evolution towards full health continues. Having made the move home where I can spend my days gardening as well as going for a walk, I have managed to build my strength and endurance, but I still have quite a ways to go to return to full strength. Shortness of breath hits me when I work too hard in the yard so I am forced to sit down. Doing this all week for over a month has offered my body a different kind of physical exercise, a more yoga’esque kind of movement rather than just walking along a sidewalk in a city.

Also, living in my house along with my dog and the dust and germs of country living has exposed my immune system to other stimuli. By virtue of still being healthy my immune system has adapted and been strengthened by the change in environment. This was one of my major worries about moving home after living in a sanitized medically supervised apartment building in safe and educated Ottawa. Now I spend my hours walking through the tall grass on my property or walking along a dirt road along a lakefront.

And stairs. The steepness of the stairs in my house and the dramatic increase in me climbing stairs has also added to the new regime of physical exercise that has resulted in overall improvement.

I had my antibody transfusion in the local hospital here on Manitoulin Island and immediately afterwards – the next day – I woke up and noticed that a significant amount of the stiffness in my lungs had disappeared – a big loosening of the belt around the lungs. It was the second large leap forward for my lungs. Perhaps it was a combination of both the increased oxygen levels from the country air or the advent of fresh antibodies that would have stirred my white blood cells to hyper-heal the injured parts of my body from the scleroderma.

Looking at scleroderma as a ‘hardening of the skin,’ we know that it hardens the skin and then into the chest wall, which includes the lungs, esophagus and the GI tract. I think I was hit in all three areas from the arthritis.

I had purposely gained a little weight for the transplant but was amazed when it remained throughout my treatment and chemo and months afterwards. I only lost the excess weight when I returned to my house on the island. But I think my GI tract changed. I expelled a noticeable increase in waste from my gut. My stomach returned to normal after having a protruding belly for more than a year. I think the scleroderma had slowed my digestion through the thickening of the skin in my intestinal system. Why would it only affect my lungs and esophagus but not my GI tract?

And the other big change continues to be my neck and throat. I cough less and my throat has cleared but most noticeable has been the increased movability and flexibility of my neck. And as I mentioned earlier, when I first started driving upon my return home I was surprised to see how little I could turn my neck to check my blind spot. But now I can move my neck normally, with natural rotation and co-ordination. And that spot in the back left of my throat that had been sore for almost a year is still good. The swelling there has gone down completely and the lump has disappeared. I no longer swallow involuntarily throughout the day. Control over the motor functions of the throat muscles has returned to normal too.

Recently I had another walk-coughing piece. I was hiking beside a lake when I started coughing up lots of dead cells. It was right after I had just had my antibody transfusion. It was right after this two-hour walk that my lungs decreased in pain and became more relaxed. Upon reflection I think that there was a direct cause and affect improvement of my lungs after the latest antibody transfusion. It would make medical sense too: the antibodies would stimulate my white blood cells to go deeper into my body to heal those areas injured by my rheumatoid arthritis. Slowly my body is healing.

And it’s sort of amazing to experience it.

I had an e-appointment with Dr. Atkins last week and he was happy with my progress. He was happy to hear about my lungs and that my headaches had disappeared since leaving Ottawa. My prednisone was decreased from 7.5mg to 5mg per day, a very welcome change in my meds. Five days onwards and I’m feeling no adverse reactions to the decrease in steroids. And don’t forget I have been taking 15mg of prednisone every day for eight years ever since I learned I had scleroderma, so at only 5mg it’s a big change.

And symbolic of me returning to a healthy, meds-free life.

Another thing to note for this account of my stem cell treatment is the huge change in my finger and toenails. There is a big divot in all of my nails that occurred right around the time of the June 9th transplant. There was a time during the middle of the second month when I was feeling weak and that I wasn’t moving forwards in my recovery and this physical manifestation of that time etched into my nails is striking. The nail on my big toes has almost been cut in half from the change of nail regeneration. It is an apt embodiment of the profound chemical changes I underwent to cure my fatal disease and declare dying overcome.

Dr. Atkins said that my lungs were good enough that it’s okay I wear a mask, stating that it was more a defense against the COVID-19 virus than of harming my lungs. But there are no cases of the virus here on the island so I’m not very worried about encountering the virus here.

He was also keen to hear about how much I use my new wrist health monitor. I check my blood pressure and heart rate and oxygen levels regularly. I told the good doctor that by knowing your heart rate and oxygen levels I have been more confident in pushing myself when working in the yard, knowing that I was operating outside of the health danger zone. He said I should keep him up to date so that he might recommend a similar wrist health monitor to his other patients.

I suggested that it be a waterproof monitor. My first monitor lasted until I took a shower. So I had to return to Amazon and order another one.

Writing this now my heart rate is 90, my blood pressure is 116 over 78, and my oxygen levels are at 97%. If I were to go for an hour-long walk and then take my vitals, they would be something like a heart rate of 65, blood pressure of 121 over 80 and an oxygen level of 99%.

This has led me to conclude that it has been from my physical exercising most of all that has sped up my recovery to health from the “ground zero” of those nine days in June after my stem cell transplant. Even before my transplant it was the disciplined physical exercising that brought my lung health back to acceptable levels so I could endure the transplant without getting sick or dying. The forceful physical side of exercise massages the cells and encourages the expelling of collagen and other scar tissue that needs to be expelled in order for the white blood cells to regenerate and heal. The resulting coughing while walking is a direct result of this benefit.

Only when this dead cell matter is expelled can the lung cells begin to regenerate and heal.

And with less debris in the lung tissue one can breathe easier.

Chapter 44


Having gone for a long two-hour walk yesterday after a day of work at my duplex being landlord, I can say that my overall strength and stamina has improved. Yesterday’s walk was actually a hike. I followed a trail that led me down to Lake Huron from the escarpment. This necessitated me descending and then climbing up a steep incline. Having struggled to climb stairs while living in Ottawa in my apartment, I was expecting to be forced to take several stops while climbing the escarpment along the trail but this did not happen. Instead I found my breathing much deeper, enabling me the breath to climb the steep trail.

It was the first tangible result showing that my lungs are indeed recovering.

And as I was breathing during the second hour of my walk, I could feel my lungs repairing. There is a heat that one feels when exhaling that bespeaks healing. I no longer have a sore throat nor do I have an involuntarily contracting throat. I can move my head around easier, which tells me the swelling in my neck is less than before. MY breathing is deeper too. And I’m not quite sure what the cause of this noticeable improvement is. I did take some calcium tablets recently as the wear and tear of my bones from the bone marrow transplant and my eight years’ use of prednisone have a bad effect on my bone health. I also took magnesium, which has helped in the past. And of course I’m taking CBD – 20mg now rather than 10mg in Ottawa.

I think it was the chewable calcium tablet I took that had caused this almost violent lung improvement. Granted my white blood cells are doing their best to repair my lung tissue and damaged esophagus, the added calcium has provided a much-needed ingredient to the mix, enabling my body to heal my lungs on a deeper level. I will proceed with taking my calcium supplement throughout the week and continue my long walks to see how much more healing can take place.

And it was during the second hour of my walk that I revisited a coughing fit. But the coughing was coming from a deep place within my lung cavity, expelling dead cells and leaving my lungs emptier and better able to function.

It was truly a step forward in my recovery.

Chapter 45


As I move closer to full health there have been a couple of revelations that have directly contributed to a swifter recovery. One of these is eichancea. When I started to take CBD I immediately felt a difference in my lungs. At the end of my exhale I could feel the air I breathed out to be hotter, and when I breathed in the air cooled my battered lungs. It was as if the CBD was attacking the lungs where there were dead cells that needed to be expelled. The same happened when I started taking eichancea. I was out hiking and after 45 minutes I began to cough. The coughing brought up lots of dead cells but it left my lungs with the same heat upon exhaling, and my chest felt looser and less painful.

The more I walked the more I could breathe better.

I had asked my doctor before my transplant whether I should take eichancea and he said for me not to because “it changes the immune system.” I didn’t take any but now, more than five months after my June transplant I decided to take it and my immune system benefitted significantly. One of the first things to change was my appetite. For several months my lack of appetite and resulting change of diet was a big source of concern for me but when I started on the eichancea my appetite blossomed. And the deep sleeps returned. For many weeks or a month I couldn’t sleep past 7am but with the new herbal medication I was able to sleep until 10am.

One of the most troubling parts of my health since I became sick is the pain. One learns to tolerate the pain in an impressive way. Since my transplant the pain has focused instead of deep in my knuckles or knees it’s been centred in my shoulders. I thought it might be muscular and my body’s way of enduring the changes, and just stiff muscles from a lack of use to more use. But my shoulders remained sore.

Very sore.

I was in so much pain that I was facing the threshold of stopping everything and being defeated by the pain – a terrible state for any patient. So when I thought about the pain I couldn’t put my finger on it. Was it my muscles? Or tendons? Or perhaps my bones? I started taking a calcium supplement and that helped for a few days but the pain was still there. So when I thought about the nature of the pain I thought that perhaps Glucosamine might help. I happened to have some so I took two tablets. The next day I was busy putting up the snow fence for the winter and I realized something was different.

There was no more pain.

Or there was still pain but not nearly as piercing.

This was a week ago and my pain has subsided to a degree but my shoulders are still very painful. So it’s back to weight training and yoga. I have to discipline myself for the next level of physical therapy. Without the cold force of hard discipline my recovery is threatened with plateauing. But overall I continue to move towards better health. I still become breathless when I overexert but not as much as before. Certainly the recovery process is slower than I had hoped but I cannot deny that I am getting better. I have more stamina during the day and am now, finally, beginning to make plans to change my work and set some new goals in this new phase of my life.

It’s time to make all this pain and suffering count for something. It is a great excuse to change jobs and choose a different path in my life.

What many people never acknowledge is how their decision-making changes when they become sick, For my whole life, the arc of my life followed a set of goals that were unchanging and respected, but when I heard that I had a fatal disease with no cure when I was 45 I was forced to change my goals.

Why work towards a goal if I was going to be dead before I reached it?

And so I postponed decisions and make choices that allowed me to enjoy life perhaps a bit more than before, taking more time for myself for hiking in the woods or playing with my dog. So now that I foresee a normal lifespan once again and a return to health, I am returning to those old goals and reasserting my choices to pursue those goals.

Another aspect of my recovery worth mentioning is my psychological state. I have noticed that I had reacted rather emotionally to things that have happened to me, nothing like the stoic way of the past. At first I wrote it off as a one-off but then I noticed an impatience to my reactions that were new. I started to think that perhaps I was suffering from some sort of medical PTSD but when I mentioned it to my family doctor she said it didn’t fit the profile. So upon further investigation I made the discovery that I wasn’t looking forward to returning to my old life.

It was time to set some new goals.

And so that is where I am currently. I am about to sign up for an eight-month course to brush up on the latest software used by technical writers and return to my career as a technical writer that I had worked as many years before. It’s a big step and will require many big decisions in the future in terms of work and where I live but it provides that most important thing in my life that has been missing for a long, long time: optimism.

Optimism from goals give a person something that is like a medicine. That feeling of excitement helps the body move towards good health and good behaviours that build health and give direction to one’s decisions. To have endured all the pain of a bone marrow transplant and then simply return to your old life and meaningless job was too overwhelming and destructive for me so I have adapted a new attitude and some new goals.

And the attitude change is simple: instead of saying ‘no’ all the time to have time to enjoy the day and stay away from the discomfort of doing things riddled with pain and ill-health, I will return to a life of saying ‘yes.’ Instead of following my instinct to preserve my life and protect myself, I am returning to a more outgoing life open to more risk and more challenges and new paths.

This alone has provided me with a newfound sense of power to endure the pain of recovery and the hardships associated with upheaval. But I would prefer hard work and new tasks than returning to a dead-end job that was chosen to just get by until I died.

When I was very sick, walking around with an oxygen tank on my back and when I passed someone on the sidewalk who looked healthy and had pink cheeks, I felt for the first time envy. It was health envy. And envy is a powerful emotion. I realized how true it was that people in good health take for granted their health until they lose it.

I felt that in spades as I passed healthy people.

And I vowed that if I survived the treatment then I would do everything I could to return to that ruddy-cheeked health. That was the primary goal.

And it still is.

But part of that health and motivation to be healthy and stay healthy is the work you do. If you are in a dead-end job you don’t like then it will take way from your passion to achieve good health. So these changes I am making now for when I should achieve full health in June of 2021, should put me in place to create a new life for myself. And as such be a constant reminder of how this stem cell treatment saved and changed my life forever.

Chapter 46


Having settled into country life here at home on the island I have slipped into a good routine of hiking several times per week as well as working on my yard. When I first returned from Ottawa I couldn’t work on yard for more than ten or twenty seconds at a time before I had to sit and catch my breath, but over the passing months my breathing has expanded and my need to sit down to catch my breath has lengthened.

Most recently I went out on one of my hikes and felt tight in my lungs so within ten minutes of walking I began my now familiar routine of coughing up dead cells but this time I was worried that my lungs had actually become worse than before. After twenty minutes of coughing my lungs felt clear and for the first time in many, many months I could breathe deeper. And when I breathed I could feel the now familiar sensation of heat at the end of my exhalation. I could now breathe deeper than before and I could feel the cool air mend my lung tissue.

This happened a few weeks ago so I redoubled my hiking and experienced the same routine. Near the beginning of my walk I cough up a clear whitish gunk and that clears my breathing passages and leaves my breathing better than before. So now after these few weeks I can breathe deeper than before, perhaps inching back to normal. I am less likely to become out of breath and can work longer building fences on my property.

I still take Echinacea but not every day because I want to give my kidneys a break from all the stuff It take, such as the prednisone and valcyclovir. I take CBD still and do notice that my lungs do respond well to when I take this medication though because it is expensive and still an unknown medicine, I take it only a few times per week. Suffice to say that my lungs are getting better and that I am becoming stronger. My hiking is longer and my muscle pain that has plagued me since my transplant has lessened. This is because I have started bench-pressing and using dumbbells. Strengthening my shoulders and arms has removed a lot of the pain but the most dramatic before-and-after was when I took some Aleve (naproxen). Immediately I felt the pain in my shoulders end and for the first time on many months I could function without sharp pain in my muscles.

The pain in my shoulders and generally in my body had become so severe that I researched it as a symptom of something I might have developed since the stem cell treatment. I came up with Miaplagia – part of the scleroderma-rheumatoid arthritis family. I was pretty freaked out that I might have been cured of one disease only to get another one but when I took the naproxen and the pain disappeared I started to think that perhaps all my muscles cells needed was a dose of anti-inflammatory to help my tissue recover.

But to me enduring a little muscle pain is extraordinarily minor compared with where I was. Having faced death and overcoming a fatal disease, living with some muscle pain is nothing important. I think I will try to take two pills of naproxen twice a week at night and see how that treats my shoulder pain. I’m sure that my doctor checks for Miaplagia when he does my bloodwork monthly.

Besides, it’s not fatal!

The most important thing is that my breathing is better than last month and again I experience the crucial importance of exercise and lung recovery, as I am convinced that without my two or three-hour walks my lungs would still be hard and I would still be short of breath. Again, the actual physical exercise of walking forces the lungs into action and that action helps expel the dead cells out, which enables my new strong immune system to heal damaged cells.

When I spoke to Dr. Atkins during my e-appointment last week I asked him how far along my immune system was, suggesting perhaps 80 percent but he said it was closer to 50 percent. He said that my immune system for the first six months after the stem cell transplant improved with the help of the medication I have been taking but now, after six months has passed, my immune system should continue to become stronger on its own. Perhaps that’s what I’m experiencing: my own immune system healing my lungs rather than a weak immune system healing my lungs that is functioning based on the drugs I’m taking.

My hair is grown in and I have good colour and my shoulder muscles and upper body strength is returning. My sleeping patterns have changed just as my appetite changed after the treatment. Since last month my appetite has returned and I’m eating well but my sleep patterns are still off. I find it almost impossible to sleep in! It is not unusual for me to get out of bed at 6:30am and begin my day. I usually wake up around nine or ten in the morning since I am not currently working so this change has been baffling. I might take a nap during the afternoon but not usually. I had my first really good, deep sleep after taking the naproxen a few nights ago so that is why I will take it a few times per week at night. I don’t feel I’m overtired because I generally go to sleep immediately when I go to bed and sleep well when I’m out.

Overall I am thrilled with my progress over the last month after having a scare that my lungs had stopped getting better. I am now sure that my breathing is the best it has been since November of 2019 when I contracted pneumonia. And that heat at the end of my breath is a reminder of how my lungs are still actively healing. So I will continue to take my medication and hike every few days, even when the snow falls. (I have set up a treadmill in the living room for me to continue with my walks when it’s too cold outside). I do still think the CBD I’m taking has a direct impact of my lungs healing, so I will continue to take the CBD every few days all month to encourage further healing, which in turn motivates me to get outside and work in the yard or go walking.

I wonder how my lungs would be doing if it wasn’t for the now legal CBD us Canadians can purchase online and that comes delivered in the mail?

Perhaps the better question to ask is how my lungs would be doing if I hadn’t spent so much energy walking and biking. Recently we had the first snowfall of the year and I went to start my snow-blower but it wouldn’t start so I was forced to shovel the snow myself the old fashioned way: with a shovel. At first I didn’t think I would be able to do it but I soon realized that as long as I took the time to recover my breath that with patience I could do it. It took me two hours but I did it. (I have a long driveway). And afterwards I realized that it was a whole new level of exercise. I can walk for three hours but never tax my lungs. Shoveling the driveway requires an aerobic workout and it was time to push it up a notch.

I was afraid I might have a heart attack but then I faced the truth: only through perseverance and muscle pain would I recover fully.

I had to face the hard truth: that it would take lots of pushing my body like an athlete to regain my health fully.

Last night I slept like an angel. And today my breathing is as easy as it has been for years. I was dreading the snow because of the physical aspect of clearing it away – either with a shovel or with my snow-blower – but now I am looking forward to the next snowfall to get another workout. It’s beneficial to my health and it gets me outside.

It makes me take a moment to realize how crucial it is to take the time and discipline to exercise. Without it my recovery would be pale in comparison to how it is right now.

Chapter 47


My only complication from my stem cell transplant was a skin rash that lasted a few days. Dr. Atkins called it a case of cellulitis that sounds a lot worse than it was. But once again my skin has become something of concern. A few times over the last six months I have experienced patches of skin that feel like sandpaper. Literally sandpaper. Last night when I was talking on the telephone with my brother I noticed a large patch on my back that had the same rough feel. And having thought about what it could be I’ve come up with an explanation: that it is my skin expelling the collagen from its cells.

Scleroderma is the hardening of the skin. The skin fills with collagen and makes it hard. Collagen is a fancy word that means scar tissue, and if anyone has had a scar and they pinch it with their fingers they can feel the pain. This is why those who suffer from scleroderma are in so much pain: their skin hurts. As well as their joints and in my case my esophagus and lungs too. So it makes sense that now that my scleroderma is gone and my white blood cells are back and healing my body that the skin is healing too.

And there is a lot of skin to heal.

So it will take some time for my skin to heal completely. It stands to reason that when the skin heals it will heal the cells and expel the collagen from the skin. And when this happens unless the collagen is cleaned off by water and soap in a shower or bath, this expelled collagen will remain and harden on the outside of the skin.

I think this is what has happened to me a few times.

I first came across a rough patch of skin – perhaps two inches by two inches – on my right bicep. It stayed there for a week or so and I didn’t think much of it until it remained there like a patch of sandpaper for over a week. I scratched at it to sort of get the sand off my skin and this worked a little bit but it was only until after I had scrubbed the skin with soap in the shower that my skin returned to normal. My skin on my chest where my lungs are also had this rough sandpaper feel but has since lessened in roughness and is now returning to normal too. But now this patch on my back where it is difficult to reach suggests that it is the result of my once hard skin healing by seating out the collagen. If I had a bath I could soak and it would help my skin recover better but I don’t have a bath here in my house, only a shower.

What makes this interesting is that scleroderma has never had a cure before but now with the stem cell transplant it does and so this occurrence is new. Never before has the skin been forced to heal from being hardened by collagen. It is an interesting thing when viewed from this perspective.

I am not worried about it because each patch of sandpaper skin has recovered after time. But I did want to record here in my journal of recovery.

Another thing that has come to light is the pneumonia I had in January. It was a fungal pneumonia, which makes sense to me from my experience with it. The Mepron I’ve been taking since the transplant in June is an antibacterial medication that is for my lungs. I never understood what it did exactly until I read this in the medical description of this oral medicine I’ve been taking. Essentially this medication helps kill the fungus in my lungs as my immune system strengthens. Without this expensive medication I’m sure my lungs would fill with this fungal pneumonia and I would die. So the question then is: once my immune system is back to 100 percent will my immune system be able to heal this fungus from my lungs or will I be prone to battling pneumonia throughout my life with scarred lungs.

This is a question for my doctor next time I talk to him.

In the meantime I have increased my Mepron doses a little bit to see if it “quietens” down my lung congestion. I have been coughing up gunk in the mornings and so since learning about this fungal pneumonia I had (and perhaps still have, lingering) and increasing the dose of my lung medication the coughing in the mornings has become better (less phlegm). So I think there has been a positive impact. So I will continue to take a little bit more of the medication to ensure the fungus cannot take root and hurt my lung recovery.

The thing with this Mepron is that it costs $650 per bottle and a bottle lasts about a month. But there is no price I cannot overcome when it comes to my recovery.

Dr. Atkins said my immune system now at six months after the stem cell transplant is only 50 percent so by this coming June 2021 my immune system should be close to 100 percent. So six more months then!

Chapter 48

DECEMBER 31, 2020

The last day of the year! It boggles the mind to think of where I was a year ago. Still before any treatment but a month without my immune suppression medication to prepare for the stem cell collection, I was really sick. I had a very bad sore throat that I thought was strep throat but what turned out to be the scleroderma that had attacked my esophagus. Deep pain. And my lungs! They were painful and full of gunk from my fungal pneumonia. Tired. Weak. Involuntary gasping for air at night. Uncontrollable swallowing. And getting worse with each passing day. Then when I had my stem cell collection and my red blood cells were taken from me that resulted in me being unable to breathe! 75 percent oxygen levels! ICU in Ottawa for two weeks with daily needles to extract blood for bloodwork every morning at seven. Very harsh. And then months of waiting for the transplant because of COVID. So during those months of waiting I was getting sicker and sicker, my lungs barely able to breathe and my sore throat very bad. And then the transplant! No complications. Recovery. Lots of walking and biking. But very weak. Plenty of coughing up gunk from my lungs as they healed. And now, seven months later and my breathing feels almost normal. No pain when I breathe and deeper breathing. No more sore throat nor involuntary inhaling. My rippled, hardened skin is gone now a softer, normal skin. My hair has grown back and my skin has rejuvenated as have my nails. I still can’t run or engage in heavy labour but I am very much better than I was before, and most importantly I’m getting better and stronger with each passing day.


Chapter 49


About 30 years ago I dislocated my shoulder playing sports. It was okay for a few years but then I dislocated it again. And then once a month after that for eight months. It was decided I needed to have surgery to put a metal pin in my shoulder to keep it in place. Throughout this time I have had pain in my shoulder but last year I injured it at work loading cases of beer. My shoulder socket swelled so I had a specialist look at it. The x-ray showed that the cartilage was gone and the bone had worn down the bone. And now inflamed, I couldn’t use my right arm for much of anything.

The pain was truly intense.

I went for physio but that didn’t help. This coupled with the chronic pain of my scleroderma in my inflamed joints, such as my hands and knuckles, led me to seek pain medications that would help me get through my days. I was working two jobs and putting in 60-hour weeks and needed a pain medication that wouldn’t make me drowsy. My doctor and I experimented with different types until I settled on a time -released morphine pill of 30mg.

I only used these pills when I really needed it. The truth of the matter was that if I took more than two in a day it would make me constipated. But it did take away the intense pain.

Since my stem cell transplant I have been having pain in both of my shoulders. (I injured my left shoulder ten years ago and then re-injured it when I was in Ottawa trying to lift myself up out of the bathtub. I thought I pinched the top of my shoulder somehow, but was later learn I had torn my rotator cuff. I concluded this happened because my upper body was so weak because of my inflamed right shoulder. So since I returned to my house and have been hiking extensively I have also set up my bench press in one of my rooms. I also have been using my dumbbells to increase the strength of my arms. This has resulted in a much stronger upper body. And to capitalize on my increased strength and to get be farther away from my shoulder issues I came up with the idea of hiking and carrying my dumbbells. This was to pull my right arm out of its socket and to stretch the tendon out so that my arm didn’t hang so high in my socket (This is what was causing the pain). The thing is I hiked farther and longer than I should have and resulted in severe pain.

But the pain was in the stretched tendon, not in the flash point in my socket.

I had come to a point where I was so tired of the pain that come New Year’s Eve I celebrated 2020 with some red wine and decided to take a morphine pill. With such a weakened immune system the alcohol and morphine combined to put me to sleep. I woke up at 6am the next day and felt my breathing was laboured.

And it scared me. It scared me awake.

I thought I might have taken too much because it was an effort to breathe.

I scrambled to come up with something that could help me and I remembered my puffer. I have had asthma for 30 years. Whenever I have had an asthma attack I would take a puff or two of ventilin, but I hadn’t taken any asthma medication since my stem cell treatment began. So I went to look for my puffer but could only find one that looked old. Regardless, I took a puff from my puffer and it tasted odd. Some minutes later I began to cough. I took another hit from the puffer but my coughing increased. And my breathing became laboured. Major shortness of breath.

The next day I woke up with a cough. I had more from my puffer but it didn’t help. I went hiking outside to clear my lungs and I had a coughing fit – to the point of having dry heaves. I walked for three hours and finished with a pained chest.

I had overdone it. That night I decided I would take a few days off my hiking regime. So the next day I went outside and I was breathing heavily. So I took another hit of my puffer thinking I was having an asthma attack. That was when I became scared that I had pneumonia because the liquid in my lungs I was breathing in. Very scary experience. And the defining characteristic of having pneumonia. I could hardly breathe.

So I emailed me doctor.

I went to the pharmacy and picked up some of my medications and asked for a new puffer. I spoke to the pharmacist and told her that I was having trouble breathing and then she asked about my puffer. I said it tasted ‘off.’ That’s when she said that there is an expiry date with Ventolin puffers. So I took it out and looked and found that the expiry date was 2015!

I left it with her to throw into the garbage.

When I returned I took a puff from the new Ventolin and finally my lungs cleared. But my cough continued.

I had also gone to the pharmacist to get a muscle relaxant because a muscle in my back near my shoulder was in a knot. I had had it once before and a muscle relaxant was what could fix it. So I took one of those.

Then I took a nap.

I ate and took a second muscle relaxant and took another puff and continued to cough but the gunk was clear and my breathing was no longer laboured and in crisis. I slept well that night.

The next morning my muscle spasm in my back/shoulder was not as painful and my breathing was better. This was the day I had to go to the hospital for my antibody transfusion. For three hours I lay on a gurney and had my transfusion. The nurse was busy so she kept my blood pressure strap on my bicep as well as the piece on the end of my finger that measures oxygen levels. I was shocked to see the data.

I watched as this machine measured my oxygen levels at 100 percent. My heart rate fluctuated between 65 and 70 and my blood pressure was normal. But the star of the show was the 100 percent! When I had been in the hospital in Ottawa they measured my oxygen levels every four hours and it fluctuated between 88 and 91 percent. All the months I was there this was the reading (after the first few months when my lungs were worse because of my pneumonia). In the last few months my oxygen levels were usually between 92 and 95 percent. But in this last month I have been walking a lot and doing breathing exercises and working out and eating better since my appetite has returned. But never did I think I would ever see my oxygen levels remain at between 99 and 100 percent for three hours!

The scare that I had experienced in the previous three days was the result of using expired Ventolin. My use of morphine and alcohol to get rid of my shoulder pain relaxed my breathing apparatus to the point that I had to reach for my asthma medication. When I finally bought a fresh puffer it was the act of opening my lungs that lead to this remarkable transformation of my breathing. And I hadn’t taken a puff of Ventolin before I went into the hospital. In fact I have been afraid of using my puffer for some reason. But it makes me think that perhaps I have been suffering from a prolonged asthma attack for a while now and it took my morphine New Year’s Eve thing to make me wake up and use the medications at my fingertips to awake my lungs and get them functioning back up to par.

At least to open up the airways more.

Breathing now as I type these words, at the end of the day from my antibody transfusion, my breathing I must say feels normal. Normal! For more than an hour I looked at the machine at my oxygen levels were at 100 percent. For another hour it was at 99 percent. And the other hour it was at 97 to 98 percent. But for a long time I stared at the machine at was dumbfounded at the 100 percent. I couldn’t believe it at first so I changed fingers and then I changed hands but still it measured at 100 percent.

So I thought of the email I had sent to my doctor the previous morning and regretted sending it because his secretary emailed me back and told me to go to the ER immediately and get a COVID test and to check for influenza and to get a chest x-ray. Well I knew I didn’t have COVID because I didn’t have a fever and I was pretty sure I didn’t have the flu because I had gotten a flu shot a few months before. But I did suspect that I might have pneumonia because of the liquid suffocating my breathing. But I see now that it was my lungs eschewing the past-due powder I had inhaled into my lungs while the areolae in my lungs were closed because of my asthma. With a fresh puffer I opened my lungs and can now breathe normally.

The major question with my stem cell treatment has now been answered. Will my lungs heal? The answer is yes. My lungs have healed, from 75 percent that day they turned around the airplane and flew me back to the hospital in Ottawa ‘til now with lungs that can oxygenate my blood to 100 percent.

What a journey. And so many lessons learned. I am thankful beyond words.

Now I wonder how my life will be now moving forward. Will I live to old age or be injured and crippled from a compromised respiratory system with damaged organs, such as my heart, kidneys and liver? Protecting my lungs will always be my top priority after going through 2020 barely able to breathe. I will always remember how I could not walk more than five minutes with an oxygen tank on my back. Now I can walk for hours throughout the day. I will never be able to run a marathon but at 53 I don’t have the desire. What is paramount is to have normal, well-functioning lungs and thus good health.

Only those who have lost their health know the true value of good health.

To those this record has been written.

Peter Higgins, January 5th 2021


Chapter 50

FEBRUARY 14, 2021

I thought that perhaps my record of my journey to recovery might have been complete with my last post but now I see that my recovery is still unfolding. Those who suffer from scleroderma are at risk of their immune system attacking their joints as well as their ‘chest wall.’ This includes the lungs, esophagus and the GI tract. In my case I was sure I had had infiltration of the lungs by being very aware – hyper aware – of intense breathing difficulties. Also, I had been suffering from a sore throat and had been plagued by swallowing difficulties and involuntary constricture so I was sure my esophagus had been negatively affected. The day my stem cells took root in my bone marrow – that eighth night after the transplant – I could feel a warm healing sensation in the back of my throat and down the left side of my neck. It was very noticeable, which just reaffirmed my suspicion that I had been very sick with scleroderma. But I hadn’t had any indication that my gastrointestinal tract had been compromised. I had purposely put on weight for the treatment as I was led to expect that I would lose a lot of weight during the two weeks or so I would be in the hospital. I did lose about five pounds, leaving the hospital at 215 pounds, down from 220. But over the months I have not been able to shed the extra 15 pounds. (My normal weight is 200lbs).

There were many theories I had as to why. Sure I was walking every day and my diet was such that I thought I should at least return to my normal weight of 197 but still the weight remained. My alarming loss of muscle in my shoulders and arms were a concern of mine so upon returning home I set up a bench press and weights in one of the rooms and have been bench-pressing regularly, building my shoulders back up to strength. I had been taking a protein supplement to ensure I was building muscle, which I could see was making a difference in the size and strength of my upper body. Then one day when I was in the shower I caught a look at my stomach.

It was distended!

It protruded outwards at a very weird angle. One night I ate too much and found I was having trouble breathing because my stomach was pressing against my lungs.

I needed to take action. And not eating was not an option open to me as I am focused on strengthening my immune system and thus overall health.

I had been taking psyllium husks in capsule form and that had made some difference but still my stomach remained distended. So I found some Metamucil at the pharmacy and started using that. This brought immediate results. I was having two bowel movements a day and found my distended stomach returning to normal. It was direct evidence that the musculature of my intestines had been compromised by the scleroderma.

Now with my stomach almost back to normal I see that my weight has not really lowered because of the increase in size of my shoulders and arms! This, I am sure, is acceptable. I make this entry into my journal because it shows how deeply sick I had been and how the negative effects of this sickness still manifested itself in my body. The natural expulsion of fecal matter build up in my gut has made a huge difference in how I feel and has increased my healing because the medication and vitamins I take are being ingested better.

With my stomach back to normal and with a stronger upper body, I feel much better – like my old self. But most of all it has been the Ventolin that has enabled my lungs to recover. My lungs, after a year and a half of feeling hard and stiff are now feeling loose and flexible, and thus my breathing capacity has grown. Gone are the myriad of pains in my chest that I have been feeling when I breathe (sore breastbone). I seldom have any involuntary deep breaths or involuntary swallowing. I am still somewhat short of breath when I walk up stairs or shovel the driveway of snow but overall my lung health has turned a corner. Each day that passes I’m feeling stronger and am sure my immune system is inching towards one hundred percent.

I have three more antibody transfusions before I can count my treatment complete.

Chapter 51


Over the bulk of the winter I have endeavored to keep hiking despite the cold weather however I found a three-week period simply too cold to go out and walk. But I found this time off was beneficial. I slept well and seemed to find some peace in my health. I had always been told no one was sure whether my lungs would fully recover so I was okay with living with damaged lungs. But when the warmer weather came and I went outside again to walk my usual two hours I found my breathing better. My lungs felt ‘softer’ and I felt like I could take a deeper breath. I also found that when I walked up this one big hill during my “daily” walk I could now walk up it without the need to stop and catch my breath. In fact I was so freaked out about not needing to stop that I walked up it three times in a row and still did not need to stop and catch my breath.

I had my latest antibody transfusion on March 2 and have felt immediate effects from it. From my calculations my immune system is now about 80 percent strong and moving up from 70 percent to 80 percent was a big jump. It has enabled my system to fight against the bacterial pneumonia in my lungs and help heal the interstitial lung disease I had from my scleroderma. The result is that when I have gone out for my walk I have been gripped by severe couching fits, at times resulting in dry heaves. Now I make sure I am walking in quiet and private areas so I can cough as loud and as violently as needed, and am not ashamed to let the gunk come out. And when I really think about it, now that I have Ventolin and a stronger immune system there is a greater need for the recesses of my lungs to heal. Therefore there is an urgency for me to cough it up. One day last week I coughed up so much phlegm that I guessed it came to about a half a pint. A few days later I coughed up about a quarter pint, and yesterday about an eighth of a pint. This can only be good. The pain I’ve felt in my chest for months has lessened. This must be the result of expelling the phlegm and easing the pressure of my lungs.

I’m not sure if I still have residual bacterial pneumonia. I would say I don’t because the colour of the phlegm is clear or white rather than yellow or green, which suggests there is no infection. However what is it in my lungs that produces so much gunk. For many months I thought it was the body’s way of getting rid of dead cells and making way for the new cells to rejuvenate but I don’t think this is it because why would my lungs produce so much crap?

Overall I feel much stronger. The biggest danger without a doubt of this treatment is the lack of appetite that hit me in the months after the transplant. But now I have my appetite back and my energy levels are much higher. I have been bench-pressing and doing dumbbell curls that have resulted in a much stronger upper body. It became a priority for me to recover my strength after one experience I had right after my transplant that I touched on earlier in this narrative. I was having a bath and I didn’t have the strength to lift myself out of the bath after I was done. I was stuck. After maybe 10 minutes of being stuck in the bath tub I eventually did manage to get out but it scared me just how weak I had become. Now I have put on at least ten pounds of new muscle and it feels great.

I had an e-appointment with my doctor last week and he instructed me to decrease my prednisone intake by about 33 percent. I now take 5mg of prednisone every second day. It is the medicine I hate the most so this is good news. There have been no side effects. If anything it has allowed my lungs to open up deeper that has resulted in my coughing up dead cells from the deeper corners of my lung tissue. Now with warmer weather and spring here I will try to keep my daily walks going longer and faster and try to cough up everything I can so my lungs can regain normal functionality and I can return to robust health.

Also of note is the pain in my muscles. For a while I thought I might have polymyalgia rheumatic or something similar to that because of the strange pains in my shoulders and legs but even this has subsided recently. When I descend the stairs in the morning my body pain is less than last month. And with my stronger upper body my shoulder pain has diminished greatly. It’s a good example of how a patient can worry without cause and delay a full recovery based on a guess. I am more confident that I am now on the road to a robust recovery.

Chapter 52


Progression of my recovery has been consistent. Recently I was hit with another phase of extreme fatigue that a patient quickly comes to recognize as either a period of intense illness or a period of intense healing.

Fortunately for me it was a period of intense healing.

One of the biggest threats to making a full recovery has to be the lack of appetite the patient feels in the months after four days of chemo and the stem cell transplant. One’s entire system is destroyed and as such lacks the ingredients to create a big appetite. In fact for several months during my time in Ottawa in the aftermath of my transplant even the thought of food made my stomach turn. I was able to order pizza and buy submarines in Ottawa to get through this phase, making sure I took the 22 pills each day of medication to ensure I wouldn’t get sick and to squash the bacterial pneumonia that was still stirring in my lungs. It was hard but when you’re down and fighting for your survival one is capable of plenty.

Over the months my appetite has returned and I have now regained my normal appetite. Long walks help as does the constant practice of coughing up phlegm. Choosing a private hiking area helps one overcome the fear of being heard when coughing so violently and loudly. But it cannot be swallowed. It has to be fully expelled. This has helped my lungs recover. But during a month or so recently I was aware just how depleted my system was so I started a substantial vitamin regimen to ensure my system had everything it needed to heal. This included a multivitamin as well as vitamins A, C and E. This was to expel the ‘free-radicals’ that littered my system, mainly in the form of corrupted cells from collagen. It worked. My health became more substantial and I became stronger. I also took oils, such as cod liver oil, fish oil and hemp oil. This seemed to help me build upper body muscle as I continued to bench press and do dumbbell curls. My upper body is much bigger and stronger than it was before my treatment. But there came a time when I felt I might be overwhelming my kidneys and liver with too much to process. I reached a point when I felt I had all the required ingredients and could return to a normal existence, mainly just a multivitamin a few times a week.

I now only take two or three pills a day and my oral antibiotic for my lungs.

Once I stopped with all the vitamins and cut down all supplements I immediately experienced one of these fatigue phases. After my morning coffee I was too overwhelmed with fatigue to even go for a walk so I napped. And slept deeply. And then also through the night. In a week I was sleeping perhaps 12 hours a day. Eventually last week I emerged from this sleepy time stronger. And what I noticed in my urine was a lot of grainy stuff. I was feeling tightness in my kidneys but now feels like any vitamin build up has now been expelled. My constant bloated stomach also has subsided to something close to normal. My prednisone moon face has now returned to my normal facial structure. I walked for three hours yesterday and didn’t feel any fatigue. I still coughed up some white phlegm but not nearly as much as I had in the past. The pain in my breast plate has subsided now too, and my lungs feel softer and more like normal. They feel less hard and stiff. And my breathing is deeper.

So the period of intense vitamin taking I think was good because it ensured I had everything I needed to heal but at the same time I was astute enough to diagnose potentially overdoing it. I feel the best I have felt since becoming sick a year and a half ago. Even the pain in my shoulders and muscles are now negligible. Healing does take its time but when one perseveres one is rewarded with gains. I also think that as my immune system grows in strength it can fight off the old injuries from the disease better and therefore healing becomes more robust the farther one grows timewise away from the transplant. They told me it would be one year to recover and they were right. I have two more months to go and am keen to see if these last two months will be a miracle of healing right back to normal health.

Chapter 53

MAY 12

April was a tough month for me. My energy levels dipped and I felt weak. I felt so bad that I feared that my scleroderma had returned. And because of this worry, I started to drink wine. And the wine served to suppress my immune system so that it fed my lethargy and worries even more. It was right after having my April antibody transfusion that I began to feel bad. I persevered and kept walking and gardening as much as I could but to further worsen the situation I was having trouble sleeping. I have two bad shoulders from past injuries and my hard mattress was contributing to sleepless nights so I bit the bullet and bought a new softer mattress. This has made a lot of difference. I also stopped drinking. With no alcohol and with deeper and longer sleeps, I eventually found my way back to better health.

When I look back on the last six weeks I see a new development: that the stronger my immune system becomes, the more “forceful” my healing is of the “injuries” I have from my scleroderma. On one level it goes against common sense but on another level it is surprisingly obvious. My stronger immune system is healing my scleroderma injuries with more force and therefore is making me more tired. It is a “good fatigue,” one that offers me more time to get better, just like the fatigue I felt right after the stem cell transplant. I just wasn’t expecting it. And because of that I began to drink a little to deal with a new worry that my health was on the decline again.

I was scared and to cope with this fear I bought wine.

I continue to cough up phlegm and cleanse my lungs of dead cells but it is bothersome because I would have thought that that was enough. How much phlegm does the human body create? It seems extreme but I suppose it shows how damaged my lungs were from the scleroderma and the fungal pneumonia. My rheumatologist at Mount Sinai Hospital in Toronto said to me that healing for me might take six more years! And upon reflection it makes sense: seven years to heal. It takes seven years for every cell in the human body to become new. And I bet she is right: for my immune system to become truly 100 percent it will take a total of seven years.

So as I complete one year of outpatient care I am entering a new phase of my recovery. I am nowhere near as healthy and strong as I thought I would be at one year, but I am so much better than where I was a year ago. I tried to cut my lawn recently and simply could not do it. (One acre of lawn). I didn’t have the strength. I will need a riding lawnmower from now on. Mountain biking has also been tougher than I thought. I might be 54 years old but I think I need to accept that my lungs are 80 years old. I need to readjust what I can and cannot do. My physical limitations are now different than before. I suppose as a defensive strategy to get through the tough treatment I convinced myself that I would be returning to 100 percent with the strength I had in my twenties but this is simply unrealistic. I am alive but I am damaged with scar tissue.

But I would rather be alive than dead.

As long as I am coughing up phlegm I need to take comfort that my lungs are still getting better. I might not ever be able to run again but I can achieve acceptable oxygen levels as I live to have a normal lifespan, and in my book that is a victory.

My hands are much better. I can clench my fist all the way now. There is no more swelling in my joints, nor discoloration in my ankles and knees. The chronic pain I have had since the transplant in my collarbones is for some reason now gone. When I wake up I have had painful muscles but recently, since getting the new mattress and sleeping longer and deeper, my muscle pain has subsided noticeably. My overall pain has decreased. But again strangely my energy levels are lower and my need for sleep is greater now that I am so close to one year on from my transplant. I see now that my scleroderma injuries were so deep and serious that only with a strong immune system can full self-healing happen. It has indeed taken a year of outpatient care and antibody transfusions to take me close to full health.

Endurance of ill-health is a great capacity the human animal has and in this I am amazed.

But now in this second phase of recovery I need to adjust my expectations and my mental perspective in order to remain disciplined and keep walking to keep my system repairing.

How many more months of this will it take for me to regain ‘normal’ levels of energy? This is the big question on my mind. But for now I am thrilled and relieved that I am all-in-all healthy and no longer dying.

My final antibody transfusion is scheduled for June 2nd. This will be the end of monthly antibody transfusions.

Chapter 54

MAY 22

With just over two weeks to go before the one year anniversary of my stem cell transplant, there is plenty to be happy about. My lungs have cleared and my energy levels are much better and for the first time in years I can fully make a fist with my hands. Things are getting better. But the one area that has had me perplexed is the muscle pain I have had. I understand that with such ‘injured’ muscles from my scleroderma, I have had to expel the collagen from all my muscles. Collagen, or scar tissue, is painful. And the process of expelling this pain from ones muscles after being infiltrated by the rheumatoid arthritis is a painstaking one. But recently a few things have served to reduce my pain. First is my use of garlic. A natural antioxidant, I have found the use of garlic pills (twice a day) has helped me cough up the persistent phlegm in my lungs, which has in turn allowed better breathing and allowed my lungs to heal better. I also think it has helped my body expel the collagen from my muscles. I can see the evidence in my urine. There are particles in my urine that can only be collagen.

I will keep with my daily garlic.

The second big thing that has happened has me perplexed. My muscle pain has obviously been a hassle for me just for everyday living. I have learned to live with it. Before the treatment I lived with the pain and since the transplant I have lived with it. Only very rarely have I had a day without noticeable pain. I have been patient and hopeful that the pain would subside, and in parts of my body it has. For example both sides of my collarbone used to be painful but now is not. I drink 18 litres of milk per month now in an effort to repair the bone damage I endured from the seven years of prednisone use. After several months of milk drinking my collarbone pain began to subside. It felt like a bone pain, not muscular.

But my muscle pain was becoming troublesome for me recently because of my increased walking regimen. The stiffness that would overtake my legs and back and shoulders – my whole body – was crippling. Getting up from the couch after my day’s walk was very tough. Up until four days ago. Before my stem cell treatment I was taking time-delayed 30mg morphine tablets for the pain. These proved to be the best as they lasted throughout the day and didn’t make my sluggish. I hadn’t taken one in a year and a half but I still had a few in my stash. The pain was so bad the other night the pain was keeping me awake. It was five o’clock in the morning and I couldn’t sleep because every position was painful for me. Everywhere on my body hurt. I haven’t wanted to take any pain medications because I want to get away from them. Sometimes when I have a headache I would take a Tramadol I had left over from my hospital stay, but I would take one or two per month. But this time I was walking daily and my muscles were too sore so I took a morphine tablet.

Immediately the pain left me. And I was able to sleep well.

And then throughout the next day my pain was perhaps only 5 percent of what it had been. I expected my pain to return to how it was before the following day but this didn’t happen. Clearly the morphine had worn off my now my pain was less than half of what it had been before. How can this be? Well I have been thinking about this. Perhaps when my immune system was destroyed certain chemicals in my pain receptors were destroyed and thus left my pain receptors exposed and raw, picking up more pain that usual. Once I took this morphine pill those missing chemicals were replaced and now my pain receptors have those missing chemicals and are now less raw and more or less back to normal.

This, or something similar to this, must be the reason for my dramatic diminished pain. It’s been an incredible transformation, which is good because I am continuing with my daily walking. My appetite is good and my lung capacity is as great as it had been before the scleroderma had spread into my lungs over two years ago. The swelling in my face is gone and my hands feel normal again. My blood pressure is normal and my heart rate is normal and my oxygen levels fluctuate between 96 and 98 percent, which is much better than the 88 to 91 percent they had been last year. And here it is almost exactly a year out from my transplant. Dr. Atkins was right that it would take a year to heal. I have my final antibody transfusion in just over a week so my immune system should be close to 100 percent.

And I now look way younger than my fifty-four years!

I still get out of breath when climbing hills on my mountain bike or hiking or cutting the lawn so perhaps it will take more years for my lung tissue to heal, but I am functioning well enough to live. I now purposely reflect on how sick I was a year ago and enjoy how far I have improved from being so close to death.

Dr. Atkins saved my life. And I am truly grateful to him and his team at the Ottawa General Hospital.

Chapter 55


Well I suppose this should be the final chapter of my record of my stem cell transplant journey since yesterday was my final antibody transfusion. There needs to be an end point to this record otherwise it could on for years. As I previously mentioned, my rheumatologist last month said to me that my healing will go on for another six years! If added to the year that has past already it makes sense as seven years is a complete life cycle and all my cells will have been regenerated and new. My lungs continue to heal. I walk almost every day and still cough up phlegm but nowhere near as much as three or four months ago. Just five days ago my prednisone decreased from 5mg every second day to 2.5mg every second day. And this has had a big impact on me. The fatigue is welcome as my system finally downshifts from a high-rev engine caused by the prednisone. To think I was taking 30mg of prednisone every day when I waiting for my transplant boggles my mind.

I remember lying in bed hearing the thudding of my heart as it raced to keep the swelling down throughout my body in an effort to stop the disease from damaging my body more.

My doctor told me that I was one of the most dramatic cases he has ever witnessed, and this made me feel proud that I had stayed the course, been disciplined and ploughed through the pain and challenges to walk and cycle and to take the medication every day without fail, always having faith in my doctor as he is the world’s best at what he does. I didn’t know that my journey would be so dramatic. COVID interrupted my treatment but this ultimately saved my life as the extra three and a half months of waiting enabled me to recover my lung functionality after my bout with bacterial pneumonia. I wonder if I truly know how close I was to being kicked out of the treatment because I was too high risk.

I do think that email I sent to Dr. Atkins I wrote late Saturday night before the doctor’s meeting on the Monday saved me from being sent home. Suggesting to keep me on and giving me chemo every month was the solution they went with. Still they had a doctor come in and see me every morning during my hospital stay to monitor my progress.

And here I am now fully functional. My hands are back to normal now. I can make a fist and all the swelling is gone. My knees and feet are no longer discoloured or swollen. My throat and my face are back to normal. My distended stomach has regained its proper form and dimensions. Only my lungs are still not fully back to normal. My oxygen levels I think are between 96 and 98 percent so they are way better than 75 percent when the airplane turned around and returned to Ottawa.

So now that I have finished my treatment I will begin a new chapter in my recovery, one that focuses on eating well and low-intensity exercise such as walking and gardening. I will try to introduce some yoga into my weekly routine as my muscles are still stiff and are still expelling the collagen from the scleroderma.

And finally I can say that having once been dying from scleroderma, a fatal rheumatoid arthritis with no cure, I no longer have the deadly disease. I am a healthy individual who has undergone a year-and-a-half’s worth of treatment and come out of it on the other side with a normal life expectancy and quality of life. There are some things I can no longer do, such as hiking steep mountains or fast mountain biking for hours all day, but that is a small price to pay for living.

And I have changed as a person. Perhaps I have become more of a human being and less self-centred and obsessed with achievement at all costs. That’s okay too because I have achieved a lot and I can be proud of my achievements but I can also now enjoy the daily experience of life and all it has to offer. I like to think that perhaps I will now outlive many of my friends because I now have a brand new immune system so when I am 74 years old I will have a twenty year old immune system.

But these are games I play to buoy my spirit.

Most of all I am grateful. I am grateful for this second chance at life. I am grateful for learning the things in life that truly matter. I am grateful to now know who my true friends are and how important family is. I am grateful for learning how important it is to never lose hope even in the face of a slow, suffocating death. I am grateful to the acts of kindness people have given me along the way, from support workers to nurses and secretaries. I am very grateful for no longer needing to do bloodwork and being poked by a needle. If there is any degree of post-traumatic stress here it is from the endless needles involved in the treatment. But it was a small price to pay to reach this milestone. It is amazing to witness how much the human body can endure and to experience firsthand the magic of self-healing when my white blood cells began to regenerate and heal my battered and injured body. I can relive that moment I first felt when the warm light of healing hit my throat and neck that very first night after my stem cells took root in my bone marrow, and then the glow I felt during those first few weeks of recovering. That magic of healing – the body’s ability to heal itself – was the biggest surprise and best euphoric experience I have ever had.

But it serves to remind me and contrast just how sick I was at the time.

Back from the brink, I now face a new chapter in my life. I want my life to mean something. I want my new life to count for something. I want to kill my television and return to reading books and getting projects finished with a goal of leaving behind a legacy to inspire hope in generations that come after me.

And man, I am very thankful to have kept a record of my journey for those who might want some insight into what it is to survive a stem cell transplant.


Chapter 56


One wants timelines to be neat and tidy and I thought my account of my stem cell transplant would be a neat story that could be summed up in a year, or in my case a year and a half but I see that my healing and recovery still goes on. And I want this to be a full story of what transpires – for better or for worse. And so I am here feeling better and stronger and certainly moving towards full health. When I go out for my daily walk I am coughing up less phlegm and I can breathe deeper than before. Even the pain in my chest (lungs? Breastplate? Heart?) has subsided significantly so that now when I breathe deeply I don’t feel pain and tightness.

But what has now happened is really unique.

During my treatment I was instructed not to have any dental work done. For the most part my teeth are fine but sometime during my treatment in Ottawa a filling in my molar came loose and I began to have a toothache. I decided to wait until my antibody transfusions were done so my immune system would be close to 100 percent strength. So the week after my final transfusion (early June) I went to have my teeth cleaned. And just to be safe I had a one day dose of antibiotics that my doctor had prescribed for me to take for any dental cleaning to ensure I didn’t get an infection. Everything went well. But the day after my teeth cleaning I was walking along a beach and coughed up some junk but the first debris I coughed up was a thick, discoloured chunk of phlegm from deep inside my lung cavity. I stared in shock at this obvious evidence of lung infection. All of the gunk I had been coughing up for the entire year was clear or white – evidence that my lungs were self-repairing from the pneumonia I had had prior to my stem cell collection. And now here, at my feet, was evidence of remnants of that infection.

Immediately I started to breathe better. Noticeably.

In the subsequent weeks after this my breathing became clearer and as I mentioned, I coughed up less gunk. Perhaps this last bastion of the fungus I had had in my respiratory system had been killed and dislodged from the day’s antibiotics?

The following week I had my cavity filled. It was a long process but my dentist was very skilled and he surely saved my tooth. The needles were nothing compared to the horrors of what I had just endured vis-à-vis my stem cell treatment. But because my tooth had been left so long and the cavity was so deep I think the dentist really loaded me up with a lot of numbing. I hardly felt anything as he cleaned away my old filling and then grounded out the cavity and then inserted a new filling. I left the dentist office relieved to have finally had this nagging item dealt with.

Then the following day a strange this started to happen to me: my skin began to itch. Just on my arms I began to itch my skin, more and more as time passed. My arms still had hard patches of rippled skin from my scleroderma. I could run my hand over my bicep and feel the hard rippled skin that had occurred when I was really sick. Also my stomach around my bellybutton always had these remnants of hard, rippled skin. And here too around my bellybutton I started to scratch at my skin. More and more, day after day I itched. And then it occurred to me that it was an itch that bespoke of healing. When one has a wound and then it is treated, whether stitched and cleaned and perhaps given antibiotics from an infection, there is a stage in the recovery when the wound itches. This was the same itch.

My skin was healing!

If one realizes that the skin is the largest organ of the human body then it makes sense that for a person recovering from scleroderma (hardening of the skin) one has a lot of healing of the skin to have in order to fully recover. Here, in my case, my white blood cells and immune system had been busy healing my lungs and esophagus and my intestines (GI tract). I could feel the warm glow of healing in my throat immediately that first night when my stem cells began infiltrating into my bone marrow on the eighth night during those nine days of waiting for my stem cells to take root. Then my neck. Then my hands. That distinctive warm glow of self-healing could be felt dramatically throughout my recovery. Slowly my skin began to loosen so that for the most part one could pinch my skin – the litmus test for doctors to see how far my scleroderma had decreased. But my arms and the central area of my stomach around my belly button remained hard to the touch and I was never able to pinch the skin in these areas.

And then the itching started. So I scratched the hard skin on my arms and my stomach, day after day, and then I could begin to feel the skin loosen. But as much as I scratched my skin it never bled, as the skin might after only a few scratches to lessen the itch of a mosquito bite. And I scratched hard. I scratched until the itch subsided and then again when the itch returned minutes later. This has been going on over two weeks now and only now is the itching beginning to subside. But amazingly the hard ripples on my stomach have softened, and the skin on my arms in now “pinchable” for the first time in years.

Even now, 13 months after my transplant I am still manifesting more evidence of healing. It is a testament to the body’s incredible capacity to heal itself.

So it begs the question: what else is there in my body still waiting to be healed?

Chapter 57


An update on my itchy arms and tummy. Slowly over the course of three weeks the itching of my arms and stomach circling around my belly button has waned to zero. And last night I pinched my bicep and was surprised that for the first time in years, I could pinch the skin. In fact the hardness that I had in my arm skin has been replaced with normal soft skin. It is truly a miracle to witness this healing. My skin is loose and healthy and no longer itchy. I still have some small scabs on my arms from scratching during this phase of recovery, but they are now falling away.

And that scratchy, rough patch on the tip of the elbow is soft as a baby’s ass. Amazing.

I had mentioned to my doctor that there were still ripples of hardened skin surrounding my belly button and he said that that was normal in patients after this procedure. To me it was sort of the last bastion of scleroderma in my body that had cumulated around my belly button in my belly fat and was of little to no significance to me, but to witness the very specific itching I experienced right around my belly button is further evidence that I continue to heal almost 14 months after the stem cell transplant. The ripples of very hard collagen in my stomach skin was a very good example of scleroderma – hardening of the skin, but now I can still feel the ripples but they are much softer. I cannot pinch the skin in this area yet but do believe that in the coming future my skin will return to normal.

And if this is occurring to me in my skin then it is logical to deduce that my lungs are still healing as well. Just last week I started back riding my mountain bike. I had been concerned that I might be overworking my heart since my breathing was still not up to par so I had chosen not to cycle. Also, the one or two times that I had gone out on my bike I had had a bad experience. Hills were beyond my ability. My legs were too weak as were my arms. My lungs were not performing well enough for me to oxygenate my organs and muscles to rise to the demand of cycling. But I think one comes to a point when they know when it is time to graduate to the net phase of physio. Walking is sort of the first phase – getting outside and letting the blood circulate. This put some demand on my lungs to perform and thus sped up the necessary expulsion of phlegm that enabled my lung tissue to heal. Slowly the amount of phlegm had decreased from my walks.

Phase two was cutting my lawn. Pushing and pulling a 50-pound piece of metal overtop uneven grass is much more difficult for someone recovering from stem cell treatment than one might think, especially for an acre of ground. The expenditure in the arms demands more oxygen into the lungs to feed the arm muscles, let along the increased demand in the legs from the pushing and pulling motion. On top of this my lawn has a grade so gravity also came into play. At first I could only do two rows of cutting before I needed to sit down. In April, when I first attempted to cut my lawn was a disaster. I fell behind in my breathing and faced the much-dreaded experience of suffocating – that time when ones lungs cannot harvest enough oxygen into the body to feed the need of the muscles. It is the time when one damages the heart. I could feel it in my heart the following day – a bruising of the heart. I then let my lawn grow for a month and a half and returned to walking.

Only last month did I return to cutting my lawn.

At first I could cut my lawn without the need to sit down for maybe four rows, but later in the day it returned to every two rows. But this time I never once fell behind in my breathing. I was getting stronger. And the simple act of gardening (cutting the lawn, building a fence and tending to weeds etc.) was the perfect interweaving physical expenditure required in my journey to improvement. And I was being productive. So I could get my mind off focusing just on my physical system. Over the weeks in June I grew stronger. So now, in mid-July, I felt I was ready for a ride. This phase three of my recovery felt great. With biking one can coast in order to rest the system. I felt stronger in my legs and arms and lungs. The bench-pressing I had been doing for months had paid off in my upper-body strength. The rounder movement of the legs and hips was welcome from the uni-linear pounding of my legs and hips in the act of walking. And also, after my cycling exercise I began to feel less pain in my muscles. The reason for this I think was that because it was more physically demanding it enabled my muscles to expel built-up lactic acid, which might have been responsible for the majority of my pain.

So waking up the next morning following a biking session was great.

I also noticed that I coughed up more phlegm. The higher demand of the lungs caused the lungs to expel deeper-sitting gunk that was called forth from heavier breathing. At the end of each day of cycling I could physically feel my lungs being clearer and I could breathe more normally with less chest pain. Initially, during my first long (two-hour long) cycle I reached a point at about the hour-and-a-half point when I began to cough so much I began to dry heave – a rather common thing when exercising to heal damaged lungs. But when this happened and I stopped riding and walked my bike for a while, my throat closed up and I suffered laboured breathing. It might have been serious or perhaps it was just the throat muscles going into spasm from all the coughing I had been doing, regardless, it scared me. After a half-minute my breathing was fine. And after another two minutes or so I returned to riding and my breathing system was not laboured at all.

The next day I thought I would take a day off but something within me wanted to ride so I listened to this voice and went out for only 20 minutes. It was great. Some coughing. And then the next day I went out for 40 minutes. Some coughing. Stronger. The next day more cycling and more expulsion of phlegm. It is expulsion at a new level. My lungs are healing more and more as the phlegm is expelled, and my breathing capacity keeps on improving. And the weight I had gained during my treatment, going from my usual 195lbs to a steady 215lbs, is dropping. The actual increased physical expenditure to burning up the fat, which is making me lighter and decreasing the stress on my heart. I hope to stay with the mountain biking for the rest of the summer and see where my weight goes. I am eating well and not even close to dieting as my focus is to give my body everything it needs to return to optimal health.

If I continue down this road of mountain biking then I foresee me reducing my weight to at least 200lbs, which is a decrease in weight of half a bag of concrete. The amount the heart needs to work to cater to this extra weight is disproportionate to the weight and dangerous to the health of the heart. I have never been heavier than 200lbs so it has been very strange to suddenly carry around this extra half bag of concrete. I will continue to listen closely to my body as I enter this phase three of my recovery and hope that with each passing day I inch closer to 100-percent health.

Chapter 58


My itchy arms have gone and replaced with absolutely normal skin on my arms. I can freely pinch the skin anywhere on my arms now, as well as my hands. Even at resting position, my hands are showing signs of stretched skin as the swelling continues to recede.

The big news after the last six weeks are the changes to my body after buying a $50 bottle of multivitamins. I ran out of my normal multivitamins and so I went to the health food store and they only had multivitamins that were $50. My reflex was not to buy them but I did and the result was immediate. I suppose four long days of chemo designed to destroy ones immune system really does wreak collateral damage vis-à-vis destroying the minerals and natural chemical balance within ones’ body because almost immediately I became very tired. Two days of taking this new multivitamin relegated me to a long afternoon nap but it extended to a week and then two weeks. Thankful to still not be working, I napped and was too tired to even walk. But it was a type of fatigue I had long identified as a healthy exhaustion – one that was so potent that you needed to lie down.

And so I did. For several weeks I slept. But I continued to take the big multivitamin with its chelated minerals and smelly disposition. And I continued to heal.

Now, after about four weeks of taking the multivitamin I am now getting my energy back but something else has happened. I joined the local gym recently and have been working out. One of the exercises has been the rowing machine, but I tried the treadmill and was able to run for five minutes. Amazing! I never thought I would ever run again. And over the last week I have been going out on long two-hour walks and for the first time I have not been coughing up phlegm. I simply did not cough. I had encouraged myself that all the coughing I had been doing was the lungs way of healing so now without any coughing I am worried that my lungs are no longer healing. I recently measured my oxygen levels in my lungs and it was 94 percent. Still much lower than I thought.

And I still feel winded when I cut my lawn.

I wonder if this is how I will end up permanently. The stem cell treatment saved my life but the disease of scleroderma has left me crippled for life. Tomorrow I have an appointment with my doctor so I will ask him some hard questions after bringing him up to date. I am happy though that I no longer sound like I’m dying when I walk for an hour or two. One year of coughing was enough.

The other development over the last month or so has been with my consumption of vitamin D. The one biggest aspect of my recovery other than my lungs has been the pain in my muscles. I had just attributed this to the leftover collagen in my muscle tissue from the scleroderma. I hoped that over time this pain would dissipate, particularly as I was taking a garlic supplement to get rid of the collagen. Other than the valcyclovir (an anti-viral for Shingles) and the medication for my stomach, the only other two items prescribed by my doctor was a multivitamin and vitamin D. I learned my lesson about the big difference between a cheap Centrum multivitamin and the health food store’s $50 multivitamin, as I learned about the difference between taking only 400ui of vitamin D and 1200ui. Almost immediately the pain decreased in my arms, neck, lower back and legs when I increased the number of 400ui pills I took every day from one to three. Just recently I researched the maximum I can take (4000ui) so I have now bumped up my vitamin D intake to 2400ui per day. I am determined to get my pain down to nil, and I think the key to getting this done is in the amount of vitamin D I take.

Chapter 59


It has been a long while since my last entry though my recovery has not yet slowed down. I continue to get better with some interesting points to make. Firstly was my lung test. It is known here in this medical journal that my oxygen levels when taken by the paramedic just after the airplane was turned around mid-flight in January 2020 while sitting in the ambulance was 75 percent. When the paramedic saw this result he immediately tested my heart to see if it was being negatively affected too. I never heard the results of this second test – only that I needed to get to the ICU immediately. There I spent several days in the ICU and then about two weeks in the hospital recovering, not being able to walk more than ten feet without being out of breath. I was given antibiotics via IV that helped treat my pneumonia. Ever since then I have endeavoured to recover the functionality of my lungs through walking and cycling, even at times pushing myself perhaps a little too hard.

This has led me to fear I had damaged my heart in the process.

Last month at Mount Sinai Hospital in Toronto my lungs were tested by my doctor and the results were stunning. My sitting oxygen levels were 99 percent – an increase of 24 percent since January 2020. I was tested every 30 seconds during a 6-minute fast walk as well as two minutes before (sitting and then standing) and one minute after (sitting). My doctor was thrilled. He is a man focused on medicine who seldom shows emotion during his busy days but for once he smiled and showed his happiness at the results.

“I am very happy to tell you the results. Very happy. Great recovery.” I asked him many questions about my lungs and they’re recovery prognosis because my oxygen levels dipped to just 83 percent during my 6-minute walk.

“You have some saturation issues,” he said, “so we will monitor these. Come back for another test in six months.” I asked him if my saturation issues should improve.

“We simply don’t know. With you we’re covering new ground. We will wait and see. But I am amazed at how well your lungs have recovered so far. Whatever you are doing, just keep on doing it.”

I told him I walk almost every day.

“Well then keep doing that. Whatever you’re doing is working.”

“Will I damage my heart if I push too hard?” I asked.

“Didn’t you just have an ECG taken?”

“Yes, two weeks ago. I’m waiting for the results.”

“I can access them I think. Give me a moment.” Dr. Balter was gone for five minutes, during which time I savoured the victory of my lung recovery heard from a lung specialist of noted renown. If I just sit calmly I am breathing normally. Amazing I thought to myself.

“Yes, I see your results. Everything is normal. Your heart is strong. There are no problems.” Strangely it was hearing this that elated me the most. I could sense that my lungs had recovered over the months since January 2020 but I had developed a serious fear of my heart being damaged from me being too aggressive during my physio. I also had a pain in my chest right in the exact location of where my heart is so my imagination had taken over and I thought I now had heart damage.

But I didn’t!

Hearing the news of having no heart damage, it was a watershed moment for me in my recovery. My heart was good and my lungs were much better (99 percent!) and everything else was falling into line. All that work had paid off!

But the recovery still had more to go.

Since I had a brand new immune system I needed vaccines, just like any baby does. I learned I needed five sessions of vaccines to get vaccines against hepatitis B, rubella, 12 strands of pneumonia, small pox, shingles, and several other diseases. At first I was very uneasy about getting the vaccines as I wasn’t sure my immune system would be strong enough to produce the antibodies so I skipped my first appointment. I asked for an appointment with Dr. Atkins and he reassured me the need and importance of getting the vaccines. And he assured me they were safe. So I went.

I had three shots. No problem. Sore biceps but nothing more. Then I went a second time. Three more shots. A sore deltoid again. No problems. But I felt it in my lungs. The Prevnar shot is designed to make the immune system create antibodies for 12 or 13 different strains of pneumonia, and since my lungs had been so thoroughly scarred and hurt by pneumonia, I felt a big different in my lungs. While out walking I began coughing up discoloured phlegm, much different than the clear phlegm of the months and months of clearly out the dead cells in my lungs. This time the discoloured phlegm was thicker and more abundant, which made me conclude the new antibodies were acting to clear out and expel the damaged and dead cells from my lungs that had been damaged by pneumonia. Having these new pneumonia-fighting antibodies has proven to be very effective in the recovery of my lung tissue. My breathing is much better and my lungs feel softer and more normal. And the phlegm I have expelled has been very satisfying for someone who has focused on fixing their damaged lungs for over a year.

I can see the rotten gunk being spat out and I can feel the difference.

And without a doubt, the vaccines have strengthened my immune system. It is a sort of workout for my immune system – like doing weights for an atrophied muscle in the arm – so that it is stronger. Not only has my health become more robust but I am stronger because of the antibodies. The timing of the vaccinations is great too – a testament to Dr. Atkins and the protocols of stem cell treatment. Any sooner and I think my immune system would not have been strong enough.

And with less pneumonia-damaged cells blocking my breathing, my body is being more oxygenated as a result, which has further strengthened my health. My colour in my cheeks is a rosy hue and I feel good.

And the other thing that has changed in me is the pain. I have started taking magnesium to fortify my pain receptors in my brain, which has resulted in a dramatic decrease in pain I am experiencing throughout my body. Pain has been the biggest problem in my recovery so now I can walk down the stairs without my legs screaming at me, and I can sleep deeper and longer now that my shoulder pain is almost non-existent.

Mentally it is tiring to keep at it. Sometimes when I tire of simply walking for two hours a day, five or six days a week I substitute it for gardening here at my house. It is a good mixture as it works different muscles and I use my upper body more. I feel I have improved my health to the point now that I have just purchased a stationary bike. I hardly did any mountain biking during the second half of the summer as I was too afraid of overdoing it and harming my heart but now I feel walking is not that challenging as it once was last year so I can now enter a new phase in my recovery and really start to push my cardiovascular recovery via biking. I can start slowly at first and see how far I can go in terms of lung functionality. And with the next three months being winter, I can still workout even if it is really cold outside.

So all in all things are moving forward towards reaching full health and vigor. I have come a long way from how sick I was last year.

Chapter 60

JANUARY 9, 2022

It has been exactly a year and a half since my stem cell transplant and I can honestly say that my expectations and the empirical evidence were not what I expected. I did think my recovery would be faster although I did not expect me to become so sick right before the treatment. The pneumonia I had almost killed me, leaving me with 75 percent oxygen levels when sitting. Now, two months ago when I was tested in Toronto, I measured 99 percent oxygen levels while sitting. Amazing the difference. But I can still remember the tightness of my shallow breathing and how I never thought my lungs would recover.

Yet they have.

About two weeks ago I had my third installment of vaccines. And this included my third shot of Prevnar – a vaccine that aims to produce antibodies for 12 different strains of pneumonia. This had a direct effect on my lungs. I think the pneumonia I had was never fully eradicated from my lungs, and this was one of the reasons why I have had a persistent cough for a year and a half. Only recently have I really, thoroughly cleared the phlegm from my lungs. I think the Prevnar vaccine caused me to produce antibodies against pneumonia which immediately did their job and cleansed my lungs. Any residual pneumonia illness I had in my lung tissue has now been healed. This necessitated me doing a lot of coughing, some of which included me coughing up some discoloured gunk.

This has been a major development in my recovery. Now that I can breathe better, my recovery has been sped up.

When they collected my stem cells I had a very bad reaction. It put me in the ICU because I could hardly breathe. I later found out that stem cells are red blood cells and the red blood cells are responsible for distributing oxygen throughout the body. When they took my stem cells, it left me hardly able to oxygenate my body. And ever since then I think I have been low on my red blood cells. For this reason I started taking B12 vitamins. The B12 increases red blood cells in your body. And for me it had an immediate effect. I began to sleep for longer periods of time. And I began to breathe easier. The pain in my muscles began to decrease, which has been the single most problem in my recovery.

It’s as if everything that had ailed me was fixed overnight.

And I changed my diet. I replaced the carbs with veggies. And the results were significant. I lost ten pounds in a month. My GI tract I think was very affected by the scleroderma and only now is functioning normally. I expelled a lot of fecal matter that had slowed down my intestinal system. This has resulted in me being able to move around better and strengthen my core. I can now touch my toes and move better, walk better and overall feel better.

These three changes – the pneumonia vaccine, the B12 vitamin supplement, and the change in diet – have all created a big change in my health. Even the mechanics of how I swallow are back to normal. Ever since my scleroderma my swallowing had been negatively affected. When I swallowed there was a larger gap in how I swallowed, often resulting in me swallowing saliva differently, sometimes causing me to cough. The gap has narrowed back to normal – or close to it – but now, after the B12 and change of diet and better breathing, my throat is functioning damn near normal. It feels as if I have reached the final yards of the field and am now on the touchline poised for a touchdown.

I still hiccup in the mornings so I know I still have some way to go to full health. The other day my snow blower failed to start so I was forced to shovel my driveway with my shovel. A year ago it almost killed me my heart was pounding so hard and I was so extremely out of breath, but this time I paced myself and was able to shovel my entire driveway on one go. It was a huge improvement on last year. My stomach feels stronger and I feel like I had shed 20 pounds.

Chapter 61


The three primary areas of my body that were negatively affected were my lungs, my esophagus and my GI tract. When I spoke to my rheumatologist last October via the Internet she hardly asked me anything other than questions about my GI tract. I answered that things were not quite back to normal in that department but I had no idea how far things were off. Only after expelling what can only be termed a ‘ten-inch steel spike’ can I now say my GI tract is close to back to normal.

After I started changing my diet, my bowel movements became more frequent. At first I expelled what I term ‘golf balls.’ Hard nuggets of fecal matter that were round and wide. A few weeks after this I passed a long hard stool that was about as hard as could be, ripping my ass apart when it passed through. I bring this up for several reasons. Firstly, that night when I was sleeping I found myself experiencing a ‘breathing-in reflex’ usually only experienced when my lungs were very compromised and were in need of oxygen. A characteristic of interstitial lung disease is the phenomenon of when breathing in to about 80-percent capacity the lungs go into a reflex to violently intake air. This was happening to me as I slept. The next day I realized that this ‘steel spike’ I expelled through my bowels had been obstructing my breathing. It was likely two inches wide and just stuck in my intestines. Of course it would be obstructing the mechanics of my breathing!

I was amazed.

In fact truth be told I am still amazed that this happened. Following this expulsion, I had several ‘lead pipes’ expelled but not nearly as hard as ‘the big one.’ Then after that I expelled some, what I called, marbles. During this four-week period I had two bowel movements each day, pushing out much more than I was eating. Essentially what had happened was that my diet and my recovery had repaired my intestinal musculature to the point where it could expel blockages that had accumulated due to my intestinal injury from the scleroderma.

And my life has been so much better ever since!

My doctor had said that the intestinal health is the slowest to recover from the ravages of scleroderma. Coupled with the fact that I have been taking an acid-stopper medication for a year and a half has protected me from the deadly acid reflux that is characteristic with these types of health issues but it had also contributed to the lack of enzymes needed to fully digest proteins. Perhaps it was the combination of this medication and the fact that the musculature of my intestines were crippled gave rise to this situation, but now that the blockage has been expelled I have less discomfort and bloating in my stomach, and have finally reached my normal weight.

All this time it really was just backed-up fecal matter that was obstructing my movement and mood.

I changed my diet to more vegetables, normal protein intake and very light carbohydrates, which produced this result. My energy levels are returning to normal and my strength is as well. Without all this debris in my GI tract I feel as though not only am I moving better but I can now ingest the nutrients from the food I eat better.

This has been a major change in my overall health and one never discussed with my doctors that it could or would happen. It came out of nowhere. But then again I think where I am in my recovery very few have been before.

My breathing is much better from less hindered breathing mechanics, which in turn has promoted more healing throughout my body vis-à-vis more oxygen to my cells. The continual pain in my chest right over my heart and lungs has diminished greatly since this happened. I can now breathe deeply without this nasty pain. I can walk farther and faster now and my stomach finally feels like it is back to normal.

And that is what motivates me. At little bit each day. I say to myself that I am healing one centimetre at a time.

Chapter 62


Having re-read this medical record of my journey from sickness to health, I am sure I have made my point of stating my injuries and the points of recovery, so there is no need to revisit these. As this is the final chapter this is the conclusion of my journey.

It is August 15, 2022 and I feel good. I feel strong. My GI tract is normal. My throat and swallowing issues have been a long forgotten thing for many months, and my hiccups are gone. All my old scleroderma injuries have healed. Including my lungs. The hardness I had in my lung tissue has been replaced with softness, and my cough no longer yields phlegm. But I do still have the urge to cough out debris in the mornings. But much less than before.

My last lung test last month in Toronto was the same: 99 percent resting oxygen levels but with the same saturation issues. My pulmonary fibrosis has “stabilized,” and this was what the doctors had wanted to see. They had removed the caused (my rheumatoid arthritis scleroderma), and had given me a brand new immune system (via my stem cells) and two things had happened. Firstly, my lung disease stopped. I have scarring but at acceptable levels that are not getting worse. And secondly, my new immune system has healed all the points of sickness I had. The doctors are thrilled.

And I have been called “the poster boy for stem cell treatment.” Though of course I am not a boy!

It looks like my health is good, stable and I will live a normal lifespan.

I do have new boundaries, such as climbing mountains and fast mountain biking and running, but just last week I ran for five minutes on the treadmill. Who knows, perhaps it will be ten minutes next year?

I have learned a great deal of what helps the healing of lungs from my treatment. For example, cod liver oil, Omega 3 oils, licorice extract and lemon juice all help the lungs. Apple cider vinegar as well as hemp oil and CBD contribute to healthy lungs, as well as the usual vitamin D (2000ui per day) and vitamin C (2000mg per day). Something in the citric acid helps cut out the phlegm from the lung tissue.

But the biggest discover is this new medicine that is now available that is the enzyme from the silkworm that apparently is able to remove the scar tissue (fibrosis) from the lungs. I have just started to take this three weeks ago and feel a difference. My lungs feel normal. I feel normal. My brush with death feels like it happened in another lifetime. And as far as I know there are no dangers lurking in the shadows. I still have the HLA-B27 gene that triggers scleroderma but as long as this is not again triggered, I will be good. (I think the trigger was lead poisoning from a painting job I had ten years ago as mentioned in this record). So I will be staying away from lead.

I hope these words bring insight and comfort to anyone who might be going through or is facing a stem cell transplant. My aim was to simply record my experience and in no way profit from my efforts here.

It has been an amazing journey. Recently I had a visit with an old friend and he said: “Higgins, of all my friends, it is you who is most fitting that you would go through what you did. Look at your novels and the experiences you have written about.” And he was right: I am not the type of writer who sits in a room and invents fantasy. Most/all of my novels and writing are based on empiricism. And this is no different. And I am very thankful to have made the effort to share all of this with you the reader.

How close had I come to dying? Very close. And how fortunate was I to have been selected for this expensive and exhausting stem cell transplant? Very. My overriding emotion that governs my life now is gratitude. Before I was an angry young man at odds with the world, but now I embrace all of it fueled with an open heart and a thankfulness that is beyond description. I aim to do good, and inspire others to make this world a better place.



Just when you think you are in the clear, something happens to send you right back into that emergency mode of: “I have to survive this.” In April I started working with a friend to renovate a house, but when I walked into the converted garage I felt the air to be thick like soup. There had been water damage and the doors had not been opened in a long time so when I entered I knew there was mold inside. I told my friend I couldn’t work in there but he reassured me it was safe after opening the door and the sliding-glass doors for a half hour. The next day I had a cough. For the next four months I struggled to breathe and overcome a fungal lung infection.

It was the worst few months of my life – not because of how sick I was but because of the mental anguish of thinking my stupidity had been the cause of this new health challenge. And knowing what I know about struggling to breathe with damaged lungs, I was in a terrible mental state.

And on top of all this for a few weeks I was convinced I had triggered my scleroderma to return.


I took antibiotics but they didn’t help. I took an anti-fungal medication but it didn’t work. I eventually took a liquid medication that I still had left over from my stem cell treatment and this seemed to work. It was for a type of fungus for pneumonia. Four month of coughing and stress. But then finally I could walk again and my breathing returned to normal – for me.

And about this time I had the prevnar vaccine that gives you antibodies for 13 different strains of pneumonia. This had immediate effect on my lungs. For months – years? – I had felt I had residual pneumonia in my lungs. For the next three weeks after getting the prevnar vaccine I coughed up gunk from my lungs that cleared them out so I could breathe much better.

Then I got COVID.

It had been the elephant in the room ever since I was in treatment. So when I finally had the virus at first I thought it was just a cold. Then the flu. Then, it disappeared but I had pain in my thumb knuckles. So I went to the hospital because I thought maybe my scleroderma had returned but they did a blood test and took x-rays and said there was nothing wrong with me, but they called me on the way home and told me I had tested positive for COVID.

There was no treatment they said. Just quarantine for five days.

I thought I was fine but then my breathing became worse. I tried to go out walking and I simply couldn’t breathe. It was pretty scary. So I was given a pretty robust course of prednisone to keep the swelling down, which worked but when I finished the prednisone my lungs inflamed again and I again had trouble breathing. And once again I was given more prednisone – longer this time – and I also read about what to do about ‘COVID lung.’ I learned Tumeric helped, as did cod liver oil and garlic, so that’s what I took. After two months my breathing started to return. In fact the spike protein seemed to have bonded with the scar tissue in my lungs to actually clear out my lungs so give me better breathing.

Incredible but true.

There were many nights when my mental state once again confronted the possibility of early death, but perseverance and trust in the medications and nutrition helped me pull through. The timing to get COVID could not have been better as I had just had my final vaccine for shingles and was now completely finished my stem cell treatment. My immune system was tested – and it passed. It kicked COVID’s ass and is now stronger for it.

My stomach is better too. It was sort of comic that I ended my main narrative explaining a bowel movement! But that ended up being much more significant that I knew at the time. That potential blockage would have been very problematic. Changing to a vegetarian diet helped immensely. There were a few more ‘golf balls’ that I was able to expel and now my stomach (and weight) are back to normal. I weigh 197lbs instead of 215lbs. And now that my distended stomach is gone, mechanically it is easier to breathe because there is less pressure on my diaphragm.

Now, in December of 2022, three years after my treatment began, I am breathing well (97% oxygen levels sitting down), and am now completely off all medication. It is cold here in Canada and I have decided to list my house and move to warmer climate beside the sea for the sake of my lungs. Cold is not good my lung conditions, as is altitude. And the salty air is good to clean them out of impurities. Caring for my lungs will remain my primary focus for the rest of my days, having flirted with no being able to breathe. No one should face that. And it has left me with some psychological scarring. A doctor in fact prescribed me medication for PTSD. I don’t take any meds anymore. I want to be free of doctors and hospitals and now that I have the antibodies to fight off COVID and pneumonia and every other disease (having had 14 vaccines), I am ready to live out in the world, whether on the beaches of Thailand or the shores of Costa Rica or in the fresh ocean air of Sochi, Russia. Or Cape Town, South Africa. Or somewhere in Brazil. I survived and I am stronger for it. And I hope this record of my journey helps anyone who faces a similar challenge. Persevere and do not lose hope. Trust your doctors and be disciplined taking your medication. Walk and sleep. And believe that one day the joy of daily life will return.