Kidney Progress

January 31, 2025

I’m home from having a kidney transplant. Everything went as well as possible, and the new kidney is doing great. My numbers are all coming into place, and most are already in the normal range. My creatinine is at 1.16, which is normal, and my egfr is 79 ml, which is about twice what it was last week. It’s pretty miraculous.

I’m having a tough time again coming around to where I am. Something in me thought I would have the kidney transplant and that I would immediately be better. I think just getting through the next thing is about as much as I could handle at the time. Now that I’m here I still feel somewhat fragile. I lost more weight after the kidney surgery, to around 140, and have been trying to eat a lot. I’m processing food differently now—the toxins are filtering out of my body, which means I can actually eat food again, but it’s been so long since I’ve eaten much and my stomach is being resistant.

I’m also feeling more unsteady about having two transplanted organs in me. It’s a big responsibility in some ways. I need to do what I can to keep myself healthy. If I get unlucky, that’s one thing, but if I can do things to keep myself going I’m going to do them. It also just feels weird. Like I’ve kind of gone to the end of a tree branch and it’s pretty flexible now. And there’s not much room left to go.

The people I see at the hospital have become my friends. The woman who checks me in for blood draws knows my name and talks to me when she sees me around the floor now. Yesterday she was worried I’d been at the hospital so long after I saw her at 6:30 and again at 12:00. The ladies who draw my blood talk to me like old friends. I’m not fighting anyone anymore. They’re just taking care of me now, and I appreciate it. I’ve always been grateful for it, but now I have a path paved in front of me.

I see a lot of really terribly sick people at the hospital. Many of the patients in Kidney are not good. Many are in wheelchairs, some in walkers. Mostly older, but I’ve seen several people younger than me. It’s a lot more chaotic than Liver, even though the hospital only did 73 more kidney transplants than livers in 2023, and they seem to have far more staff. It’s just not as organized, but as long as someone can see me then I should be fine. And I still see my Liver team forever, and they take good care of me.

I just wonder what this recuperation looks like. I’m still sore from the surgery, and there are a few more procedures ahead. But once I’ve done that? I guess it’s premature. I’m very skinny, my right shoulder and chest are black and blue from the permacath removal, and I have staples in my left side and a stent in my bladder. So maybe I’ll just focus on those things for now.

February 22, 2025

I’m now a year out from my liver transplant and five weeks or so out from my kidney transplant. My right arm hurts a lot. It’s been hurting since I got out of the hospital, but so does everything else. I think this is from the main line they put in my vein. They used the big vein in my right arm and for a while it was hard. It seems softer now, but my arm hurts like someone punched it all over really hard, and under my arm hurts too. I took a Tylenol and that seemed to help some.

I slept all day today—well, till 2:00, anyway. I just feel wiped out. I wonder if I have the cold that Greg has. I worry about any little thing now. I mean, a mold spore from the wind nearly derailed my kidney transplant. I’ve had my vaccines, but is that enough if you’re immune system is suppressed? I guess you can only do so much, and deal with the rest.

I was feeling really confused and kind of lost for a while. Like, how did I get here? What really led my liver to fail? Was it partially due to the covid vaccine? Is it crazy to even think that? Or did I really just do enough damage to kill myself at 45? But the more I go around with it, the more I dig into all of the possibilities, the more I realize that I just don’t know. There is no way for me to know. So I’ve given up on that quest for now. I think it’s more useful for me to focus on the here and now. Worrying about the past and the future is what got me into a lot of trouble with my anxiety. And what do I gain from looking into my experiences in the hospital or what led to my time there? It happened, I’m here now, and that’s it.

I take my pills twice a day. I take my temperature and blood pressure three times a day. I weigh myself every morning. My numbers look really good. Creatinine is normal, eGFR is normal, liver numbers are normal. I think I just now need to heal my body. I’m still covered in bruises on my chest from where they pulled out the permacath. So I probably just need more time. I’d really like to be back out there, but I can’t handle it yet. This past week or so I’ve been running the pattern of one day on and one day off. A day on is a trip to CVS for a prescription, or to Vons for some yogurt, or to Keck for a blood test or doctor appointment. I’m driving again, which feels great, but I always feel like I have to pee, so I try to keep my trips short. Last week I went to Costco, but they have a bathroom there, so I was able to be strategic about it.

I’m eating more. I track everything on an app to make sure I meet my calorie goals and that I get enough protein. I also have to keep my phosphorus and potassium relatively low, because the prednisone I’m on raises my numbers. That means I still have some food restrictions, but they’re not as bad as they were when I was on dialysis. I’ve gained a few pounds since the transplant. I knew that food would eventually stick to me, and that time has come. Granted, I’m at 152 lbs, but that’s quite an improvement for me. I was down a full 10 lbs from that just a couple weeks ago.

I’ve been doing a lot. Nothing too major, but more than I’ve been able to do in at least a year and a half. I cleaned out the garage and organized it so it was at least presentable. I cleaned out a cabinet in the kitchen. I dug out all our old laptops to see what we might be able to sell. I’ve started taking out the garbage bins on Tuesday, and bringing them in on Wednesday. It would be a lot for a 90-year-old, so I guess I’m in that category right now. I take naps. I’m cold all the time. I like caramel covered popcorn. Maybe I am an old person.

I finally sent a letter to my liver donor family. I emailed it to our social worker at the hospital, and she’ll get it to the organ group who then asks if the family would like to receive it. I really hope they write back. I would love to learn more about the person. I asked Laura about my organ donors when I saw her on Monday. She said the liver came from a guy who liked to work out or liked to look good. And the kidney came from a woman who was happy to be dancing in heaven and that she might have either been a larger person and lost a lot of weight or has lost physical weight now that she’s passed. Nice things to think about.

February 24, 2025

I was at the hospital today for a dermatologist appointment. My doctor is great, and she deals with other transplant patients. Clean bill of health today. She froze a little growth on my forehead because I asked if she could.

I feel like I have to pee all the time, and I’m not sure if this is just part of the process. It gets annoying when I feel like I have to run to the bathroom for only a very little. Sometimes I have to pee a lot and it hits me all of a sudden, so it’s an emergency.

March 9, 2025

I’m back at the hospital. My numbers were a little weird last week so on Thursday the doctor said she wanted to admit me for a kidney biopsy, which showed cellular rejection, and I’m still here now, Sunday, and won’t get out until at least Tuesday. They’re giving me high doses of steroids, thymoglobulin, and Benadryl. It’s not a pleasant combination.

I had some visitors today, and I talked with some friends on the phone, which was great. Everything runs together here. I feel out of it, which doesn’t help. The steroids give me a lot of fatigue, and make my joints hurt and my legs a mind of their own. The Benadryl knocks me out, which partially counteracts the steroids, and then the thymoglobin makes me feel kind of sick. Yesterday it made me sick to my stomach and I had a headache, but not as bad today.