Catch 22 -- Transplant Version

[malaka]

Ever read (or see the movie) Catch 22?  Apparently its been updated and moved over to kidney transplants.  I applied for transplant list at my local/regional transplant center and went through the history and physical, etc.  They told me they had one concern -- my proteinuria was high and my blood albumin was low. 

I started dialysis a couple of months ago, and told my transplant coordinator.  She had me come in for routine testing.  Guess what?  I'm still spilling too much protein in my urine.  "And that means what, exactly" I innocently asked.  "You are still on the transplant list but are not eligible to actually receive a transplant until your protein levels are better".  And, I asked, "how does that happen?"  I learned that because I'm still peeing and peeing protein, I'm not going to get a transplant until my kidneys fail 100% so nothing leaves. 
That's Catch 22.  I'm not sick or well enough to receive a transplant.

Really made my day.

[kellyt]

When i was originally diagnosed  (1993 or 94) it was because of 4+ protein in my urine which, BTW, never improved up until my transplant in 2008.  I never did dialysis.  I think I was spilling in the 6000 range (6000-8000 maybe), so that might be lowever than what you are spilling.    But my high protein was never a problem in my testing and transplant.   Keep on your doctors to lower your protein.  Change your diet.  Get the facts!  Good Luck!

[Cordelia]

I've heard of some people having pre emptive transplants meaning having a transplant before kidneys failing and going on dialysis. But, you had to have a donor willing to give is what I heard (Anyways, thats up here in Canada where I'm from) Things could be different elsewhere.

But, I've honestly never heard of anything like that why they wouldn't do a transplant because of too high protein levels......that's a new one for me.

[jeannea]

I've never heard the protein level thing. But it is true you have to be "sick enough" or they won't do a transplant. A transplant has risks as well as benefits and you have to get to the stage where the benefits outweigh the risks. When you're going through it it sucks. But intellectually you know they're right.

[KarenInWA]

In my pre-D years, I had proteinuria as high as 2gm in one day. My doc put me on benazapril to treat that, and it went down significantly. As I got closer to ESRD, he took me off of that and put me on other BP meds. Can they try that?

I was listed active a couple of months before dialysis. I never stopped peeing, but towards the end, I barely peed twice a day. I received a kidney from a relative after being on D for only 7 months. My albumin levels were in the normal range. The only time they were below was when I started D, and then it was only a little bit low. Talk to your neph about possible BP pills that may help with the proteinuria issue. You can't cut protein out of your diet because then that will only lower your albumin levels. *Frustrating!!!!* 

KarenInWA

[okarol]

Jenna still had protein in her urine before and after her transplant.
I would appeal the decision, and ask for help to remedy the situation.
Every transplant center has different rules. Sometimes you have to go elsewhere.
Do you know what your GFR is?

[Restorer]

I think they might be more concerned about your blood albumin levels than just the amount of proteinuria. Now that you're on dialysis, if you can supplement your diet with enough protein to bring your albumin levels up, maybe they'll change their minds. Whey protein isolate is a good source if you can't manage it with meat choices.

[Deanne]

I've always spilled a lot of protein in my urine, at one time it was 10 grams/day. My neph had it dropped down to 2 - 3 grams/day a few years ago, and I don't know what I spill anymore. She stopped checking it. She said it's pointness - I spill protein and there's nothing else that can be done about it, so why keep checking it? It's never been mentioned by anyone again, even through the transplant evaluation. I'm sure she keeps an eye on my albumin level. I'll have to check my last lab report to see what it's like, but I think it's ok since I'm not swollen. Long way around to saying I bet Restorer is right..

[Sax-O-Trix]

Wow!!!  What is that all about?  I have spilled protein my entire adult life.  I wasn't dx with kidney disease until I was in my early 30's when my creatinine was 1.1 (even though I had protein in my urine during my college physical).  It took 14 more years to get to 2.8 and a preemptive transplant.  I was also listed with UNOS for 11 months prior to the living donor (brother) transplant.  The main criteria for UNOS was a function less than 20% and passing the cancer, heart , psycho, insurance and gyno tests.  Nobody in the transplant program ever mentioned the protein in my urine... Isn't  protein in the urine a given with kidney failure?  I'd go to another transplant center if possible.

[malaka]

Thank you all.  The blood level of albumin is low, and the protein in the urine is high.  I'm going to try to arrange a conference with my transplant coordinator to find out exactly why I'm not going to get a kidney untill, it appears, my kidneys entirely stop functioning.   

Strange thought. The Catholic Church abolished Limbo some years ago.  The transplant center has not.  I'm sitll on the list, but if I'm not eligible for a transplant, what's the point?

[jeannea]

That's a good one. We're all in Limbo.

[malaka]

Well, following a telephone call from my nephrologist to my transplant coordinator, she called me yesterday to let me know that I was on the transplant list effective January 13, the first day of dialysis for me.  I'm still not a surgical candidate, but apparently my nephrologist explained to her that my kidney function was still declining and would probably disappear in a year or so.  Thus, given the average 5 year wait here for a cadaveric kidney (I'll explain why I'm not asking my semi-adult kids for donation elsewhere) I'm still eligible to be on the list.
All I have to do is show up annually and besides the normal physical exam, provide urine and blood samples for testing.  Geez...like I haven't provided gallons of those fluids already and a few more vials won't hurt. 

So, I dropped from August, 2011 to January, 2012 but that's the only harm.  And yes, I'm keeping my mouth shut.

I need to thank my nephrologist.  He was my advocate as well as treating physician. 

[MooseMom]

Good.  You can begin accruing time.  I had no idea that you could be listed without being a candidate for surgery just yet.  I'm really glad to hear that there is some room in the rules for compassion and mercy.

[malaka]

Thanks, M Mom.  I just wanted to keep accruing time.  Before this apparent change of heart, I was "on hold" and not accruing time unless and until I proved I wasn't peeing away perfectly good protein.