kidney Transplant or Belzutifan drug

[Boxing]

Hello,

so I am a kidney patient and on my last bits of kidney remaining. (Surgically removed kidney tumors from kidneys) this resulted in losing my right kidney and partial of my left kidney.

With my condition the tumors just keep coming back and growing so it’s inevitable kidney transplant will be required. The good news is the genetic tumor condition doesn’t impact the transplanted kidney!

There’s two options:

1. go for a kidney transplant and these tumor issues is over with provided I have a donor of course otherwise it’s dialysis and waiting .

2. Try my best to keep my current kidney long as possible with the tumors in there which are small with a drug I would of have to take daily till my kidney tumors grow again and then kidney will need to be removed and back to option 1. The drug is new and comes with side effects such as severe anemia etc.

Any advice?

Thanks!

[Eyak1971]

This a question that only you can answer. As hard as it is to answer it is yours. I had a stressful question to answer before my transplant I needed by pass surgery while I was deliberating on dealing with going on dialysis. I knew if I had the bypass I would almost certainly need to go on dialysis since the surgery would result in poorer kidney function. So I waited until I could not avoid dialysis and then had the bypass. The reason I had the opportunity to wait was because my own body created a bypass as strange as it sounds. But it would not lasted in the long run . And if I had a heart attack I would have never been able to eventually get a transplant. So it was almost a catch 22. I drove my heart doctor crazy but he realized it was my decision. There are just certain decisions about your life only you can make. I was put on dialysis and I had the triple by pass and I eventually got a transplant but I thank God for watching over me . My decision could have been disastrous but I would not want that guilt of the wrong decision placed on anyone else.

[Boxing in reply to Eyak1971]

thanks for the detailed response much appreciated. Glad you’re doing well now. How was dialysis for you? And how’s life with the transplant?

[Eyak1971 in reply to Boxing]

I was on dialysis for 5 years. Both pd and hemo. My original surgeon was limited in working with dialysis patients and I eventually had to change surgeons to have catheter put in correctly. Had to be on hemo for a while because of that. I preferred pd because it was less stressful on my body and allowed me to continue working with less interference. Had my transplant 5 years ago. All went well but for me dealing with the side effects of medication has been a problem and produced medical problems at times from neuropathy to bone problems. But keep in mind we are all different due to health history, genetics, and age or sex . To expect similar outcomes to anyone else with a transplant is not worthy of consideration. Outcomes vary, not only medically but emotionally. Some go into transplantation with high expectations and find disappointment. Remember it is a treatment that has different outcomes. But it is one of the best we have available today. After 5 years with ups and downs I do not regret my transplant and I am very thankful for the family of my deceased donor. Take care and whatever choice you make it will be the right for you.

[Boxing in reply to Eyak1971]

thanks! I’m glad it worked out for you

[Ar2D2]

hi. Not sure what ur GFR is with your one partially functioning kidney, but once it is at 20 you can get on the transplant list. Don’t wait until you start dialysis to get listed. I had a tx at age 13 and around age 43 my numbers were slowly dropping. My nephrologist had me get a transplant eval as soon as I was eligible, as the wait time in NJ is quieted as 5-7 years. I was listed for about 4 1/2 years but didn’t need to go on dialysis until the last 8 months before I got a deceased dnor tranplant.

So no idea what you should do but maybe you can take that med and wait while still acruing time on the tx list. Good luck!

[Boxing in reply to Ar2D2]

thanks for the response! So basically my egfr 40-45%. However due to my remaining partial kidney having tumors in there I am at some point gojng to need them removed.. it is not worth another surgery on an already partial kidney as the function is likely then to drop below 20%.. and the tumors don’t end until the kidney is totally removed. How did you cope on dialysis? I am hoping I get a live donor but importantly the transplant would last 20-25 years.. I am 34 years old so quite young in all this

[Ar2D2]

Gotcha. That’s a tough choice. I did PD at home dialysis for about 8-9 months. I was 46 at the time. That was the same type of dialysis I did at age 13 as well, for about the same amount of time. I hate needles and hospitals so home dialysis seemed the better choice for me.

Hmmm. Not sure I coped that well mentally, but doing PD everyday kept me feeling only somewhat crappy so I was able to still work full time. They claim that you sleep through it but with random alarms and drain pain I don’t think I slept through the night once!! My whole spare bedroom became a storage room of boxes. But with it being during the pandemic I was grateful not to have to go in center and risk catching anything. I live alone so it was a lot, but being able to be home with my cats and have a normalish schedule was a god send.

Everyone is different with how they cope, but I would be lying if I didn’t admit to saying aloud to myself “I can’t do this anymore” most nights while setting up the machine. Nobody not going through it really gets what it’s like. I also had a lot of false alarm calls for possible kidney offers, so after a while I stopped thinking it would ever be “the call”. And had 2 people close to me offer to donate and then take it back, which was very hard. But dialysis kept me alive till I could get a new kidney and life is better with it. And made me realize we can survive more than we thought we could….

I wish you the best of luck. If you can, try to seek out some resources to connect with other ppl going through what you are. I attended the transplant games in 2024 and it was amazing and made lots of contacts through them. NKF has a mentor program where they assign you a mentor that you talk to on the phone every 2 weeks about issues and goals which has been helpful.

Best of luck.

[Boxing in reply to Ar2D2]

wow thanks for the info.. I can’t believe you been going through this since 13! I am 34 and I worry how many transplants will I need etc.. so u can only imagine what you been going through since 13.