Hi there,
I've had three rounds of cryotherapy for my kidneys since I started this process last July. I just had one this past weekend and new ones have started to pop up in the other kidney again, so I'll go back and have another round in July.
The treatments themselves are bad at all. The operation is short and I only have to stay overnight in the hospital and I go home the next morning. The worst part is that I'm completely allergic to all medicinal tapes, so I spend the whole time fighting with them over what's allowed to touch my skin. The procedure itself is just fine; it's the tape allergy that's really a pain!
My question is this: what would happen if I went ahead and got a kidney transplant? With 3 cryo treatments in 1 year, soon to be 4, this is getting crazy! The cryo is taking care of the renal cell carcinoma (rcc), but i'm having to do it so often that it's becoming crazy. My mom's already offered her spare kidney to me (she doesn't have VHL). If I was to accept her kidney, so I had one VHL kidney and one new kidney, would the new kidney be at risk for VHL related problems?
Christina
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Kidney Transplant - to do or not to do?
- By cmdoyle
- Posted April 21, 2009 at 12:23 am · 8 replies
- In Health management issues
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Explore topics in this discussion:
Kidney transplant Cancer Surgery Kidney cancer Pneumonia Dialysis Pain Stress
8 replies
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- By GRETA
- Posted April 21, 2009 at 4:33 am
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Surely if your Mum does not have VHL her kidney will not develop VHL. If you have her kidney, you will need drugs to suppress rejection. I'm not sure about keeping one VHL kidney. If you kept it you might still need procedures in future, so it would represent an 'Achilles' heel. Frankly I would go with my own whilever I could. So many VHL patients have lost a kidney already and still undergo cryo and surgery.
It seems to me that something can be done about your allergic reaction to surgical tape.
- By cmdoyle
- Posted April 21, 2009 at 1:59 pm
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The problem I face is that I know i'm going to keep generating tumors over and over. A few years ago, I lost my left lung to pneumonia. My oxygen sats are always on the low end. I know that the hypoxia is a huge spark of tumor growth. This is a reason why we think it might be worth it for me to replace at least one of my kidneys... to cut down on the amount of times i'm going to need this cryo.
- By joyceg98
- Posted April 21, 2009 at 3:10 pm
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I hear you. My son has a kidney transplant, so we've been in your position, wondered about exactly that, and the doctors at the time were lobbying heavily for removing both kidneys "in order to cure kidney cancer." So we did a lot of research. Here's what we found:
1. A kidney transplant is not a cure. You become a patient for the rest of your life, taking 20 pills a day (at great expense) with side effects of their own.
2. Your own kidney is better for your health than anyone else's kidney, including your Mom's. As long as you can hang onto it, that would be best.
3. Kidney transplants don't always work. If for some reason the transplant failed, you would be left on dialysis, which is not a pleasant place to be. My son spent 2 1/2 years on dialysis, and what we learned is that the "artificial kidney" is only a rough approximation of what a real kidney does. You are left with a build-up of residual toxins that the dialysis does not clear, and side effects from the imperfections in the artificial balancing of potassium and phosphorus and erythropoeitin and probably another dozen chemicals that we don't yet know about that the kidney normally balances automatically.
Don't get me wrong -- dialysis is better than dying, and transplant is worlds better than dialysis. I am very glad we have both options. But your own kidney, even limping along as it is, is still your best option.
So the bottom line in my book is: how can we slow down the formation and/or growth of new kidney tumors? Diet, sleep, and stress management are the only tools we have at the moment, though we are working toward a new drug to do that.
Also, you might want to read http://vhl.org/rfa. Cryo is similar to rfa in that it does a fair amount of "collateral damage" while it's treating the tumor. NIH now recommends robotic surgery, a more precise kind of laparoscopic surgery, which is more precise and leaves less scar tissue behind to complicate the next procedure.
Best wishes,
Joyce
- By donnainflorida
- Posted April 22, 2009 at 12:23 am
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Picked up this tip from another board from Mayo Clinic for your tape issue"My daughter developed an allergy to adhesives while going through treatment. If you use Cavion No-Sting Barrier (a foil package with a “lollipop” that you rub around the site, might be made by 3M) before you apply the tape, his skin will not be all red and reactive.
- By cmdoyle
- Posted April 22, 2009 at 2:50 pm
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Donna,
So this Cavion no-sting barrier... I should apply it before I apply the tape? There's not really an issue when I'm just having blood drawn, since they can use Coban. The problems arise when they put in IVs or when they use a heart monitor. Would this still work for the IV? I'd be afraid of it leaking into my bloodstream...
Christina
- By FranMott
- Posted April 23, 2009 at 1:11 am
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I've got one little bit to add to all the great information you have been given regarding your thoughts about getting a kidney transplant at this stage in your life. Along with all the facts, good advice and reasoning you have received, remember that a kidney transplant does not last forever. I think 10-15 years is the average life of most transplants (even if it is from your mom). I have heard of a few that managed to last as long as 18 years, but hopefully you are going to be around a lot longer than that . The newer drugs they are working on will may one day make them last much longer, but that's not now. In the meantime, the limited lifespan of a transplanted kidney is just another reason to want to stay on your own kidney power for as long as you can.
Fran
Michigan
- By cmdoyle
- Posted April 23, 2009 at 8:30 pm
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Thank you all for your helpful information. After learning more about this, I think that it's the right move to hold off on a transplant until I actually need one. I've got two functioning kidney's right now and, although it's annoying to have to go into the hospital every 3-4 months to remove the tumors, it's not impossible. My dad was on dialysis for about 6 months before he died and, honestly, I've never seen anyone so miserable. Remembering the pain and discomfort he went through makes me want to hold off from doing anything until I have to. For right now, I'm just going to continue to take care of my kidneys as best I can.
Christina
- By gill-05
- Posted April 27, 2009 at 3:43 pm
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hi there Christina sorry to read about the trouble you are having . ive got vhl and i lost a kidney 10 years ago due to rcc there was no way of saving it. I am due to go in 2 weeks on wednesday to have op to try and save my left kidney with much hope and a good surgeon am hoping to be spared going through dialsys although there talk of me having it a few days after op to help me along the way to a good recovery.
kind regards
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