I couldn't stand having to talk to a therapist while in the hospital. There was one that I liked, but the other one just felt like a snitch to me, she also tried to tell me I had depression which I did not nor did I feel depressed, I just didn't like talking to her. The one thing that I will always remember from these unwilling therapy appointments is when the one I didn't like told me that I don't trust my body. I had never found the words to describe it, but she did. My body attacked my kidneys when I was seven and now it's attacking my marrow, I can't trust myself and that's a hard thing to do because I am stuck with myself for the rest of my life. This week my kidneys were enraged. Cyclosporine, an immunosuppressant, and Valganciclovir, an Anti-viral, caused my creatinine to sky rocket and my BUN to follow suit. I consumed 134 oz of water in one day just to try and combat these harsh numbers but it didn't matter, I simply retained all of the fluid. My ankles became swollen and my back grew very painful. Now normally if a medication is causing a vital organ to nearly fail you will simply stop the medication, but that is hard to do when the medications causing it are associated with you staying alive. The cyclosporine keeps my immune system suppressed enough for the new donor cells to begin to fully function, without this the graft wouldn't work at all and I would probably end up with graph vs host disease which is very painful. Valganciclovir was keeping my CMV under control until my D.C. trip which is now in April. Infectious Disease told them not to take me off of the anti-viral no matter what because if my CMV starts ramping up too early and the T-Cell Therapy in Washington isn't ready yet, there would be a slippery slope. My doctors didn't listen, and they have taken me off of it while lowering my cyclosporine dose. At the end of the week my kidney levels were back in a normal stable range and all the symptoms I had been having ceased. I was so relieved, but I am also scared because I don't want all of my organs to become inflamed from CMV. It's a fine balance and I am praying for my doctors as they are the ones calling the shots.
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April 2017
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