Faces of Hope
My journey with Scleroderma
Began in the early 2000’s with several random and seemingly unconnected symptoms. I am a teacher and have alway been active – skiing, hiking, dance, camping, yoga, curling, all of which fit well with my lifestyle in Squamish. Around that time I did a big renovation on my house, and I also switched birth control pills. In hindsight I have come to believe that either or both of these factors were triggers for whatever monster was lurking in my body.
I started noticing some wrist pain and stiffness in my neck and shoulders which worsened when I had a lot of marking and computer work – oh, the glamorous life of a teacher!! Massage, hot baths and wrist braces helped with that. I had experienced the odd bout of Raynauds through my younger years, usually while skiing, but when I switched birth control the Raynauds came on like gangbusters. It was triggered by the slightest change in temperature, including being in air conditioned areas like the frozen food section of the grocery store, exposure to cold water, even taking something out of the freezer! My family doctor tested for Rheumatoid arthritis (negative) and prescribed blood pressure medication which minimized the Raynauds symptoms but didn’t help with the wrist and shoulder stiffness. Then finally one of my persistent visits to the doctor’s office paid off. My regular family doctor was away and one of the other docs in the practice listened to my story. He looked closely at my hands, asked me if I’d been experiencing more heartburn than usual (I had) and promptly referred me to a rheumatologist in Vancouver. The result was, of course, Scleroderma. That was 2006. I was fortunate, it only took about a year and a half to diagnose me. (On a side note, I promptly switched to that family doctor!)
I did all the usual reading and online searches, and while there were some « uhoh » moments, I really didn’t freak out much. I suppose my symptoms were mild enough at the time that it didn’t seem worth worrying about what might happen, and life went on. I kept working, continued with my favourite activities, and even started travelling quite extensively. No time like the present! Yes, I was easily breathless and definitely moving slower than my friends, but I was still moving. I also worked hard to keep a positive outlook: I’m not average! I’m going to beat those percentages! I saw doctors and naturopaths, tried different supplements, anti-inflammatory diets, and took lots of prescribed medications. Luckily I was referred to the Scleroderma Clinic at St Paul’s Hospital, which provided a wealth of support, information and expertise, including wonderful doctors and staff, cutting-edge treatments, and participation in studies and conferences. But gradually things worsened and unfortunately for me, the disease continued attacking my lungs.
So fast forward to 2015. I was still teaching, though by then I had reduced my workload to half time. My lung capacity was about 50% and I had pretty much given up on any kind of exertion, including skiing, dance, yoga (no bending over for me) and hiking. I was still travelling, but I moved much slower and needed oxygen to fly comfortably. I was able to start exercising again thanks to the Healthy Heart program at St Paul’s Hospital, which provided me the extra oxygen that I needed. But with extensive pulmonary fibrosis (PF) and worsening pulmonary arterial hypertension (PH) the time had come to seriously consider a lung transplant.
Pre-transplant assessment can be a long, drawn-out process, lasting about a year. I was seen by several different specialists who, quite literally, tested me up the wazoo;) I met with a clinical psychologist, a social worker and a dietician, all to assess my readiness for the endurance test that is lung transplant. I updated all my immunizations as directed and waited patiently for the final word.
By now we were into 2016, and after a wonderful, restful, healthy summer filled with family visits, friends and travel, I returned to the classroom as usual. However the previous school year I had begun to experience a weakening of my ability to fight off bugs and viruses. That autumn the cycle began again. It was one cold after another, and finally, around report card season in November, I was diagnosed with pneumonia. My breathing was so bad that I needed to use my portable oxygen machine full-time, which I had never experienced before. My family doctor was away, and the other doctors in the clinic didn’t seem to me to take it seriously enough. The emergency department at my local hospital patted my head and sent me back home. For the first time I felt helpless and weak, and so I called for help, one of the hardest things I have ever done. After all, I had spent years living independently, always coping well and looking at the bright side. But this was something I couldn’t rationalize away. It was a very humbling experience.
The first call was to my parents in Ontario, who rearranged their plans and came out west to spend Christmas looking after me. Luckily I was also connected to my specialists at the PH clinic at VGH and Pacific Lung at St Paul’s. They monitored me closely, set up the tests I needed, and eventually admitted me to St Paul’s for the IV antibiotic treatments that finally beat back the pneumonia. My family doctor pointed me to a local RT who contacted the Home Oxygen program, and the next day I had the machinery I needed at home. And finally around the same time, I was put on active status on the lung transplant list. It was a slow and difficuly recovery, but I made it back to roughly where I was before the pneumonia. The main difference was finally admitting my addiction to oxygen (lol). It’s amazing to me how we can convince ourselves that being out of breath is normal. I now use oxygen at high levels for exercise, and at lower levels for any other kind of exertion, including walking, errands, and chores. It has greatly improved my energy and my quality of life.
The other big difference is my decision not to return to work. It was clear to me that, much as I loved teaching, my constant exposure to bugs in a classroom setting was a danger to my health. I was finally approved for transplant and I needed to stay as healthy as I possibly could. My doctors supported my decision, and I am fortunate that my union has an excellent benefits program. Not everyone would have the luxury to make such a decision without serious financial difficulties.
And so I find myself in limbo. I have been just over three years on the transplant list, and still waiting. My health has been relatively stable in that time… I’m sure that’s mainly because I’m not working. I don’t have to worry about a bad day, or an episode of fatigue, or a gut freak-out. I can manage my many medical appointments and health-related obligations without stress. I can continue with a good exercise routine, having joined the once-weekly Healthy Heart program here in Squamish and added a gym membership, now that I’ve figured out my oxygen needs and how to get tanks to the gym. I have taken up tai chi and bridge to keep my mind busy, and I’ve developed a whole new social network in addition to my long-standing friends. As it turns out, my schedule and speed are a perfect match for many folks who are retired!
I hope that sharing my story will help others in some way, whether it’s to find comfort that someone is going through the same thing, confidence to speak up for yourself with doctors and others who may not fully understand the daily challenges you face, or courage to consider a riskier treatment path. I regret nothing in my journey and I am grateful every day that I have so many people to support me and bring joy to my life. I end with a final thought : I am more than my scleroderma.