It’s been 22 weeks since my transplant and in some ways it feels like a long time ago and in others, not so long. With any luck I’ll be able to go home to Wyoming next month, but that’s assuming they can tweak my medication properly and my next heart biopsy comes back with no rejection. The one thing I’ve learned about the transplant team here at University of Utah is that they are extremely conservative; I’d be shocked to hear they let anyone go home before the six month mark.
To say I was getting bored or was lonely would be an understatement. There is only so much you can do in 680 square feet. Of course I can go out, I’m not sequestered to my apartment, but going out by myself isn’t a whole lot of fun. I really just want to go home. I wouldn’t be lonely there and it’s never boring at home. My husband is bringing my dog for the last few weeks I’m here. We didn’t bring him earlier because I had to be healthy enough to take him outside every few hours. I’m up for it now, but wouldn’t have been a month ago. Having him here will help a lot when I’m by myself and my husband is back home working.
My next heart cath is the 26th of March and assuming I still have no rejection and my labs look OK we should be talking about when I can go back to Wyoming! I feel great, tired sometimes, but otherwise significantly better than I have in about four or five years. In addition to the transplant going well, my Amyloidosis seems to be staying at bay for now. My light chains…the kappa free light chains and lambda free light chains…are at an all time low. Those are the little proteins my bone marrow can over produce that cause lots of problems. April 13th of this year will be four years of remission; not bad after getting a 6 to 18 month prognosis to start off with.
Beyond remembering when all my kids were born and married, plus my husband’s birthday and our anniversary (which I’ve historically gotten mixed up!) I have my own birthday, plus my stem cell transplant date (April 13, 2015) and the date of my heart transplant (October 8, 2018). It’s all too much to remember, maybe I should get some of these dates tattooed on my body just in case…LOL!