upsetting Dr. visit
Well what a disappointing visit. Not only do i have to stay on the meds (no reduction) My pulmonary function tests have declined by 5%.....which is no big deal if your at 100% but a significant drop if your already at 50%. I was very shocked by the drop because I have felt fine, even better since the weather changed.
If that wasn't bad enough he tells me if they don't get the funding approval for the retuximab that they want to try next he is going to send me to the transplant assessment team in Toronto........I'm scared out of my mind, but at the same time I feel calm too. Is that a little schizophrenic?
Transplant was mentioned once and I was told I would probably not quailfy because of the underlieing autoimmune stuff....now he says that because all the rst seems to be well controlled with meds that I may qualify. he also reassured me that it would not be for awhile because I am not even on oxygen at this point.
the thought of transplant scares me more than dying from this....how weird is that? I have always been a donor myself so why does it freak me out so much....I did learn that I probably would not be able to donate anything myself now because of all the meds and stuff.....except mybe my corneas. okay this is getting a bit morbid.
I have been toying with the idea of writing letters to my kids, but i am not sure how to start. I am glad that I was able to see them to adulthood before this illness creeped into my life. I wonder if i will be able to see my grand children and get to know them at all.......Okay I eed to go have a good cry and finish this later.
If that wasn't bad enough he tells me if they don't get the funding approval for the retuximab that they want to try next he is going to send me to the transplant assessment team in Toronto........I'm scared out of my mind, but at the same time I feel calm too. Is that a little schizophrenic?
Transplant was mentioned once and I was told I would probably not quailfy because of the underlieing autoimmune stuff....now he says that because all the rst seems to be well controlled with meds that I may qualify. he also reassured me that it would not be for awhile because I am not even on oxygen at this point.
the thought of transplant scares me more than dying from this....how weird is that? I have always been a donor myself so why does it freak me out so much....I did learn that I probably would not be able to donate anything myself now because of all the meds and stuff.....except mybe my corneas. okay this is getting a bit morbid.
I have been toying with the idea of writing letters to my kids, but i am not sure how to start. I am glad that I was able to see them to adulthood before this illness creeped into my life. I wonder if i will be able to see my grand children and get to know them at all.......Okay I eed to go have a good cry and finish this later.
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