Journal Entries III
December 3, 2024
I’m now about nine months out from my transplant, and while I thought I’d be much jauntier by now, I’m still hobbling around. My recovery has been slow and all over the place. I was anemic for several months, until about three weeks ago. It was hard to get up and walk more than a few steps, and everything hurt all the time. I started physical therapy over the summer, but it was pretty clear after two sessions that the therapist wasn’t going to be able to take me out of the “fragile” category. So we decided to hold off for a while. I think about starting it up again now, but I still wonder if it would do any good yet.
My liver transplant has been a success, from what the doctors tell me. My liver numbers are all normal again, and the ascites I had even after my transplant has gone away. The scar is there on my stomach, but it’s harder and harder to see, and fades into the rest of my skin. My problem right now is my kidneys. They were damaged when my liver failed, and while there were hopes they would come back to life, they have not. They’re currently working between 10 and 12 percent of what they’re supposed to do, and I’m on dialysis twice a week for three hours and fifteen minutes each session to clean my blood of toxins and excess fluid. I have a catheter in my chest that runs from my heart to a split tube used to hook up to the dialysis machine.
It doesn’t hurt when they do it, but as the session goes on, and for me about two or so hours in, I’ll start to feel a little queasy, or a cold feeling that I can’t shake. That’s pretty mild, like today for me, and I feel a little off-kilter, I might take an extra step to the side when I’m walking, and I don’t always feel like I’m able to have a good conversation. Sometimes I feel kind of energized, but in a really crummy way, like someone replaced my blood with Mountain Dew. Bad days are when I have more fluid, or sometimes just for no reason, and I’ll go into hypotension. My blood pressure tends to run a little low, around 100 or 110, and too much fluid taken out too quickly has made my blood pressure drop into the 50s, and I’ve gotten sick to my stomach or had trouble moving my arms and legs. Three days ago, after my last session, I had trouble walking for two days. My legs would not do what I wanted them to do and I thought I was going to fall over. Then the muscles in my thighs started to ache, like I had just run a race. Some days my hands cramp up and I can’t move my fingers. Most days my fingers turn white at random times of day and I can’t feel them—the blood just shuts off to them.
My greatest fear right now, and this is what keeps me pushing to complete any of the hurdles the kidney transplant team puts in front of me as quickly as possible, is not getting off dialysis. It was always a temporary solution while I recovered, but now it’s many months later, my kidneys are worse, and I don’t want to be forgotten about. I don’t know what everyone else’s experiences are with dialysis, but it has been extremely hard on my body. I have a bit of a hobble because my hips, legs, ankles, and feet hurt. I also am getting tired of feeling sick all the time. I have either three or four days in between my sessions, and I’m usually starting to feel a little better by the time I’m ready for the next session.
I somehow managed to get infected with the coccidiodes fungus, called Valley Fever, caused by a mold spore in the soil in the central valley in California. The kidney transplant team has made me inactive on the transplant list now because they want me to find out why I was infected and to close the loop on why I was testing positive. It’s been three weeks now since I last had any indication of the disease, so hopefully it’s easy to resolve.
That and I have a second endoscopy about a week from now. A while back they found two small cysts on my pancreas, and now they want to know if they’re cancerous. The endoscopy is easy—they put me under and look through my stomach. I just hope there isn’t anything they need to follow up on. Everyone seems to think that either the kidney transplant work is happening very fast, or that maybe I’m just okay the way I am. Every time I talk to the kidney transplant team, they make me feel like such a weirdo. A woman was asking me today if I had all of these terrible ailments, and I said no, but she sounded like I should have them if I’m a priority on the transplant list. I think my generally nice demeanor and good manners make some people think I’m doing just fine. What kind of life can I live when I can barely get up most of the time? I’m too young to be feeling this old. It’s this damn dialysis, and I want to get back on the transplant list and get this done with. It’s starting to effect my mood and the ways I interact with others in ways that I don’t like. Sometimes I’m really grumpy if I feel bad, or sad and despondent when I feel like I’m never going to get out of this situation, or really mad at some nurse because he won’t let me explain my situation to them, or sometimes my brain just can’t form a sentence and I feel like I’m babbling all the time.