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Nancy Lewis, Patient

My Journey to Chronic Illness



My journey to chronic illness has been a long one. My official diagnosis came in 2007, but I’d had signs and symptoms for quite a long while before that. I don’t remember the order in which they occurred, but I know that one day my fingers started turning white in the cold. They looked dead, like they belonged to a wax figurine. I began to feel that I couldn’t breathe deeply, even though I was healthy and fit, exercising regularly and eating well. I developed reflux and had a bronchoscopy. The gastroenterologist found no apparent reason and prescribed dietary and behavioural changes if I wanted to avoid medications, which I did. I took a dim view of conventional western medicine in those days. 


I developed sore, swollen joints on one finger that my primary care provider attributed to normal wear and tear due to age. But when I returned a few months later with symmetrical sore joints on my other hand, and a sudden, inexplicable 20 lb weight loss, she became alarmed and referred me to a rheumatologist. After a bewildering variety of tests and lots of time spent waiting for consultations, the rheumatologist gave me a diagnosis - rheumatoid arthritis (RA), scleroderma and pulmonary fibrosis (PF). It was a relief to have a diagnosis, but very stressful as well, especially as there were 3, all unfamiliar to me. Could they be treated? I was only 47. Is this how my life was going to be from now on?


For the first while - 6 months? a year? I don’t remember - I resisted the medications my rheumatologist recommended and continued with the naturopath I’d seen for several years. He’d helped me with other things, but sadly not this. I just kept deteriorating. Eventually, I was so debilitated and in pain that I decided to try the medications my rheumatologist had been recommending. I tried several treatments that needed to be taken for three months to see if they worked for me, but none did, and my condition worsened. Finally, I was approved to try a biologic. It felt like my life changed overnight. I no longer woke up every half hour groaning in pain. I stopped shuffling like an old woman. I started gaining weight. My fatigue abated. What a renewal! And after 7-8 years, my RA went into remission, and I could stop taking the biologic altogether. Yippee!


Of course, I still had scleroderma and PF. New drugs were coming online that couldn’t cure but could slow the progression of these conditions, so I added some to my regimen. Fast forward to 2018, when I started to get markedly weaker and more short of breath. Like before, it came on slowly and gradually. Like before, I resisted my respirologist’s recommendation to start supplementary oxygen. By February 2019, though, I couldn’t avoid it any longer. I said yes to oxygen.


The respiratory therapist who came the next day to set up my equipment noticed that my heart rate was high. Hearing that, my primary care provider insisted I go to the ER, though I didn’t want to. She was worried I might have pulmonary embolisms, and I did. I went home on blood thinners, and although the clots dissolved, I did not improve; quite the opposite. I was finally referred to the pulmonary hypertension (PH) clinic. My first appointment was in August 2019. The doctor flatly said that he wanted me hospitalized right then and there. I had finally learned to listen to the experts and was admitted immediately. After two weeks on strong diuretics, I went home 20 lbs lighter and on two medications for PH. A 3rd drug was added a few months later, and though the combination was helpful, it wasn’t enough. I still had severe right-sided heart failure.


In December 2019, I heard the words I’d hoped never to hear: “I want to refer you to the lung transplant program.” I’d known early on that it might come to this but resolutely put the possibility out of my mind. I was terrified. But I decided I’d at least meet with them and hear what they had to say. After the meeting, I agreed to undergo an assessment to determine if I was eligible. I haven’t cried often along this journey, I just soldiered on, but I broke down when I got home. I was in the place I’d never hoped to reach yet  here I was facing it head-on.


The assessment took a while to complete because of COVID. By October 2020, I was deemed eligible and listed for transplant. I had made my peace with the decision to pursue a transplant and looked forward with clear-eyed optimism. I focused on what I could control - diet, exercise, attitude - and put everything I couldn’t control out of my mind.


After 18 months on the list and no calls, I finally got one, but the lungs weren’t suitable for me. Another two calls followed quickly but had the same outcome until finally, after the 4th call, I received my beautiful new lungs on July 6, 2022.


The first few weeks post-transplant were rough, and I spent two months in the hospital in total, including a month in rehab. But I’ve been doing really well, slowly but surely coming back to life after years of illness. I’m so grateful to do things I hadn’t done in years: breathe deeply, walk more than a block without stopping and resting, cook a meal from scratch, and just live! I no longer have PF or PH, but I still have scleroderma, and I will need to monitor my condition closely for the rest of my life. Lots of medications, lots of tests, lots of doctors. I’m ok with that. Chronic illness is a long and winding road, often scary and always unexpected, but I’m thrilled to be where I am now and prepared to face the future, whatever it brings.

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