OK, so maybe my expectations were unrealistic but I really thought I would be feeling pretty great by now. I think they even told me that the recipient felt better so quickly he/she often left the donor in the dust. Well for me, not so much. Yesterday I felt really terrible. I have lots of reasons – the incision hurts, my red blood count is really low, the drugs suck, I developed a urinary tract infection and on top of it all, I stopped taking my estrogen so I am getting hot flashes. As I mentioned earlier the prednisone makes you feel really terrible, like you are racing, and I am nauseated and don’t have an appetite. My face is already getting cushinoid, that fat face that is associated with steroid use. It’s enough to send a person over the edge! I am so glad that Sarah is feeling well however and she was able to travel back to New Mexico.
Today I had an appointment at the transplant clinic – I got the first of four post-transplant doses of eculizumab, the drug that is hopefully going to keep the HUS from recurring. The clinic itself is a bit of an ordeal. You go in between 7-8am and get your blood drawn, then they wait until the results come back and see you on a first-come first-served basis. We didn’t leave until after 1pm. My red blood count was up a little bit- to 25. I do have a UTI so started antibiotics. My creatinine, the measure of Brutus’ function, was elevated, to 1.32. Possible reasons include the infection, a dose of Bactrim that I took yesterday, or possible early rejection.
Despite that, I am actually feeling much better today both physically and emotionally. The doctors were very positive. UTIs are common because of the catheter. The blood that I am still having in my urine is to be expected because of the stent in my bladder. They did an ultrasound to look at Brutus and everything looked OK. I will go back tomorrow for more lab results and if the creatinine is still elevated they will probably do a biopsy to see what is going on.
I am feeling optimistic – I ate better today, my children are giggling nonstop which is SO cute, it was a beautiful Denver Indian summer day, and it is supposed to be in the high 70s tomorrow. I think my labs will be better tomorrow. My mood, of course, is conditional on Gretchen not winning tonight on Project Runway. If she wins, I am going to sink into a deep depression because clearly all is not right in the world.