In a Grey Zone
When I woke up from my liver transplant, I figured I was on my way to recovery. But I had a lot of side effects from a liver failure that came on quickly, and from the surgery, the primary issue being that my kidneys were only doing a small fraction of what was needed. I had a lot in front of me before I could do much recovering. Anything I tried to do physically just wore me out and didn’t result in any muscle growth. My body didn’t have the capacity to do that, so I was skinny and weak.
My kidneys failed because of my liver failure. When it was clear that I would need a kidney transplant to get off dialysis, I did whatever it took to get myself ready. I was at the hospital three or four days a week for appointments, tests, and procedures. I had a series of things to cross off my list: anemia, low white blood cell count, ascites, low platelets, pancreatic cysts, Valley Fever, and probably some other things I’ve forgotten about. Every day was a push to get another item figured out so that I was healthy enough for a kidney transplant—the thing that I really needed to get myself up and running. Some of my organs were inflamed from being pushed around during the liver transplant, and without kidneys, I couldn’t produce enough red blood cells. My body was not doing well on dialysis.
I now have a new kidney, and it’s almost hard to believe I was in dialysis just a few months ago. I feel much better overall, and I’m able to eat and do so much more than before. I have so much back in my life that had gone away because I didn’t feel well.
I have these blips, though, and they terrify me. Today I had something reminiscent of a baby panic attack thinking of going back into the hospital for a treatment that doesn’t exist yet. About a month and a half after my kidney transplant, I had to spend a week getting Thymoglobulin infusions. It was terrible—my arms are still bruised, and my right wrist still hurts from when they ran out of normal veins. I don’t want to do that again.
My first few days home from that hospital visit were rough, but my arms have mostly recovered and the effects of the drugs have worn off. A week or so after getting out my doctor changed my medications, which have been tough on my stomach, and lead me on a rollercoaster throughout the day as the various meds take effect. I was starting to adjust and feel better when I was called in to have Neupogen injections, which had a lot of side effects, and had me back in bed for a few days.
Last week my numbers showed signs of rejection again, and today I feel terrible. I’m exhausted, sore all over, and just dragging overall. I’m also kind of sore in my mid-section, and near where my new kidney is. Should I be worried? Yesterday I drove about two hours North to see one of my sisters and get my hair cut. Am I just tired from a busy few hours with my sister and her family? I’m worried that tomorrow after I go in for labs I’ll get a phone call to come in for another hospital stay.
I’m doing everything right, taking my meds on time, being good with my diet, and protecting myself. It doesn’t seem to matter to my body.
Or maybe I’m fine, and I’m actually just tired.
That’s a part of the problem: I never know if it’s something small or a big problem. Things can swing in either direction really quickly, and I seem to be a problem case. Bad things can happen—I’ve been there several times. But I don’t want to do that again for a long time. I’m averse to pain, discomfort, and staying in hospitals. It was at least interesting for a while, something different, but now it’s just annoying, and it seems like every new drug has a bad side effect.