The next week, Feb. 10-14. I went back to work but I was miserable. It was all I could do to drag myself through the day, come home, and collapse on the couch or in bed. How our kids stayed fed and clothed I don't know. James was probably doing a lot of the work as well as my mom and sister. My legs hurt incredibly much.
On my days off of work I was trying to gather medical documents - lab work, chart notes, etc. together as my brother James and his wife April were offering to help us get medical help in South Carolina where they lived. James is an NHL goaltender with a professional athletes' salary and they were generously offering to try and get us help from the American medical system. Between my undiagnosed condition and James' genetic heart condition, it felt like we both just weren't getting the timely help we needed from our Canadian healthcare system - although it is very nice to have universal health care - it is a slow and cumbersome system.
James was diagnosed with Hypertrophic Cardiomyopathy at the age of 19. It runs in his family and there have been numerous deaths among his extended family from it. It is an ever present thorn in his flesh but he has done an amazing job of largely ignoring it and not letting it ruin his life. He is on daily, strong heart medication and has had an implanted defibrillator/pacemaker since 2006.
In the last few years, however, his heart has begun giving him more trouble. It started going into a rhythm called atrial fibrillation occasionally. Basically, atrial fibrillation (A.Fib.) means the top part of his heart is not contracting properly and just kind of quivers. So his heart is not pushing out blood as efficiently as it should and also there is an increased risk for a clot to form in the heart which puts him at an increased risk for a stroke or heart attack. So this makes him have less endurance and he gets fatigued much more easily.
By October 2019 his heart had gone into almost constant A. Fib. and he was feeling quite poorly. This was 2 months before my symptoms really showed up. I still think the stress of his health may have set off the activation of my disease. It was really hard to watch him struggle and we had a hard time talking about it. Both of us wanted so badly for him to be healthy and strong.
We switched cardiologists in the hopes of getting more answers and the day I was told I had pneumonia he had also gotten a call from his new cardiologist, Dr. M., saying his A. Fib. would probably just have to become a part of his life. There was nothing more medically to be done about it.
James is a farmer - he is a big, strong man who spends most of his time outdoors. He prefers to work with his hands and hates any kind of office work. Being told to consider other career options was hard to hear. So, in the midst of my ongoing illness, James and I were both trying to come to terms with the decline in his heart condition and wondered what it meant for our future.
The thought of going to South Carolina to see top notch cardiologists and rheumatologists gave us some hope that there might be more answers and treatments to try. We felt humbled by the generosity of James and April's offer to help us in this way.
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