Well I'm back home, so that's a start...
Today was quite a good day and productive from a number of perspectives.
First, Dr. Keary is once again my treating specialist. Although my appointment began with Dr. McCormick, Dr. Keary came in half way through and has resumed my case.
A lot of questions were answered today. It turns out that my increasing weakness is due to Steroid-Induced Myopathy. As I am unable to be taken off the Corticosteroids, I will continue to get weaker with time, so this is now something else we have to deal with.
My last lung function test results were back, and they have shown a slight decrease in function since last time. When we asked about the effects of my continuing to smoke cigarettes on the rate of decline, we were told that the disease will continue to reduce my function at a significantly higher rate than smoking and that quitting would have little to no effect on the eventual outcome. The damage was done in 2007...
Treatment options were also discussed, it being decided that next weeks infusion of Intragam would be my last for a while (no need for a port). I will be ceasing Cyclophosphamide and transferring to Cyclosporin in a few months time and my blood pressure medication has altered in an attempt to remedy the Raynaud's Phenomenon I have been experiencing.
We finally got around to asking both Dr. Keary and Dr. McCormick about a long term prognosis. Both are now adamant that I will never be capable of re-entering the workforce in any capacity. While I am disappointed that my short career with QRNational is soon to be at an end, it is nice to finally get a straight answer on this topic and have some closure. Realistically, I think I had been expecting as much, so it didn't come as much of a shock. When I have my infusion next week, Dr. Keary has asked for me to hand him the necessary paperwork to finalise things in this regard.
That's pretty much all I can think of at the moment. If I have forgotten anything I will be sure to let you know.
Cheers,
Jason.
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