Hobson's Choice re transplant?

[malaka]

A  Hobson's Choice is one where you must choose between two less-than-desirable alternatives (or at least that's what my understanding of it is).  Here's mine.

I have stage 5 CKD (membranous nephritis) with nephrotic syndrome.  I signed up for the transplant list last fall.  I started dialysis in January.
Last week, I got a letter in the mail from the transplant center.  I am ineligible for transplant as I retain some kidney function but my serum albumin is too low in their opinion to be a surgical candidate.  Apparently, they are concerned about damage to a transplanted organ as my body will scavange this protein from it.

Here's the choices. 1) get my remaining kidney function terminated so I don't lose protein in urine; and hope I win the kidney lotto and get a transplant.    2) stay off the transplant list and remain on dialysis.

The problem with killing the remaining kidney function is that I won't urinate at all and thus be even more dialysis dependent than I already am.  Here, the average wait time on the transplant list is about five years.  Coincidentally, fairly close to the average life expectancy of a dialysis patient (yes, I know that averages don't mean much, but....).  With dialysis, my lifestyle is about as close to normal as it can be.  My other chemistry results (potassium/phosphorus/sodium) are pretty good.  I can, within limits, drink water without bloating up too much (thank you, lasix) .

My nephrologist who has followed the decline of my kidney function recognized some time ago that this issue might arise.  He is not in favor of deliberately terminating remaining kidney function as I'll lose the small back up to dialysis ability I have.  He also suggested that dialysis itself tends to terminate remaining kidney function over time in some patients, so time alone might decide the issue.

Anybody face this dillemma before? 

Any suggestions, tales of outcomes?

I passed all the other tests (physical and mental) to get on the transplant list, only to hit this roadblock. 

Should I just flip a coin to decide?
 

[Joe]

Gee Malaka, that certainly is a dilemma. And a tough choice you have to make. Personally, if I had to choose I'd vote to retain what kidney function I had and work with that as long as I could. As you said, you may lose that bit of function as time goes on anyway and could go back on the list at that point. JMHO-YMMV

[jeannea]

Can you just work on building up albumin? Double up on protein? I don't know if it would work but maybe. I probably would not choose to kill my remaining function. It will go away soon enough.

[willowtreewren]

I also vote not to deliberately reduce your kidney function. That would have an immediate impact on your quality of life with no guaranteed improvement in the near term.

It is a tough one, though, for sure.

 

Aleta

[cassandra]

Dear Malaka, wow that's difficult. Both my kidneys were removed when I was young, that decision was made for me. Than D followed. You are on D already, and without any kidneys I dialyze a lot shorter than most patients with leftover kidneyfunction. If they take out the kidneys through the side, it might not be as bad an operation as through the front (they did that with me, and was pretty bad)
Than there is the waiting list of averaging 5 years, but might be shorter if you have a common bloodtype, and if you haven't had many operations, with bloodtransfusions.
Than there is also the issue of loosing protein from the rest of your organs, and muscles. What did the nephrologist say about that?

So I would keep my kidneys, depending on amount of antibodies, and bloodtype, what the consequences are for the rest of your body, and how you feel now.

lots of love Cas

[Restorer]

I see two more options:

1. Boost your protein through diet and/or supplements so that your blood albumin stays high. If you can keep that up, you might convince the transplant center to let you go through with a transplant.
2. Try another transplant center. Are you within range of any other transplant centers? Can you get evaluated there and see what they think about your protein loss?

[MaryD]

And remember that if you do boost your protein intake, it won't show up in your results for three weeks or so.

Good luck!

[malaka]

Boost protein how?  Is there some supplement (yummy, no doubt) that dialysis patients can take?  I can only eat so much boiled chicken, you know! Or egg whites which I've avoided so far since I really don't like them.

I'll ask my nephrologist.  Strange change in dr/patient relationship since I started dialysis.  I don't see him in his office every two weeks or so like I used to, and seeing him at the dialysis center is a hit or miss thing.  Besides, I'm not used to in-public consultations lying there next to other patients. Yet.  Good thing he's not my urologist or proctologist, I guess.

Thanks for the replies.  The letter from the transplant center made me think I was nuts for not wanting to kill off my remaining kidney function.   Your replies make me think they are the crazy ones.  And confirm what my trusted nephrologist told me was his advice, even though he cannot make such a decision for me.

[Restorer]

There are a few protein supplements suitable for dialysis patients. Talk to your dietitian, but here are some that I know of:

- Pro-Stat liquids
- Nepro nutrition shake
- Whey protein isolate - check nutrition facts of various brands. Pure, unflavored whey protein isolate is best, like this brand. See also this recent topic.
- Protein bars - again, make sure the one you choose has relatively low potassium and phosphorus and high protein. I like Balance bars, but there are others, especially if you don't mind artificial sweeteners or sugar alcohols like sorbitol.

It's also important to eat protein right after dialysis, if you can. That's when your blood protein levels are the lowest. Eating high-quality protein will bring them back up quickly.

[MooseMom]

I confess that I've never heard of not being a transplant candidate because your serum albumin level is too low, and I'm a bit surprised that even if that's the case, no one on your medical team has talked to you about ways of boosting it.

I've always understood that patients with residual renal function (RRF) have a distinct advantage over those who have none.  I personally would not have my kidneys removed because you would be replacing one problem with another, and fluid overload is a much bigger potential problem than low serum albumin.  If low serum albumin is such a big deal, why isn't your neph treating it?  I agree with Restorer.

Let us know what happens next.  Anything anyone can tell me about low serum albumin being a barrier to tx would be appreciated as I know nothing about this!  Thanks!

[malaka]

Talked with nephro at dialysis today.  Somewhat briefly.  He's going to be my advocate to keep me on the list as he believes my kidney function will continue to decline.  I suppose he'll test me periodically and send the results to the transplant center.  He posed the question:  why lose you place?
I agree.  Instinctively, it didn't seem right to destroy whatever I have left on the chance that I'll get a kidney. 

I talked to the dietician today about diet to boost albumin.  She says there's not much one can do via diet to increase serum albumin (which matches what I'd studied during my pre-dialysis days when I thought maybe eating more protein would slow or stop kidney function decline) although "it couldn't hurt".  She's going to do some research (she says) and let me know what supplements I can safely take.  I didn't tell her I'd already heard from this trusted source.

[Restorer]

I talked to the dietician today about diet to boost albumin.  She says there's not much one can do via diet to increase serum albumin (which matches what I'd studied during my pre-dialysis days when I thought maybe eating more protein would slow or stop kidney function decline) although "it couldn't hurt".  She's going to do some research (she says) and let me know what supplements I can safely take.  I didn't tell her I'd already heard from this trusted source.

Yet another dietitian who doesn't know what she's talking about. From the AAKP, and every dietician and PD nurse I've had:

How Do I Know If I Need More Protein?

Your albumin level is drawn every month at your dialysis unit and reviewed with you by your dietitian, nurse or physician. Albumin is a type of protein in the blood. When the albumin level is low, typically less than 3.6 mg/dL, it can begin to affect your health. Low levels of albumin are linked to increased rates of hospitalization and early death in dialysis patients. It is essential to eat enough protein so that serum albumin is maintained at the desired level.

I skimmed through some medical journals looking for direct studies to support that, and I'm not sure I found any, but my lack of access to full articles kept me out of most of them. I did find something else though.

Ask your nephrologist about acidosis. Since you're still urinating, that could be a problem - in addition to protein, your kidneys might be excreting too much bicarbonate or reabsorbing too much acid, and apparently correcting that can increase serum albumin levels. See if your nephrologist can check you for acidosis at your next labs (or with a special blood draw, if needed), and correct that.

[Traveller1947]

You seem to be getting a lot of misinformation from people you ought to be able to trust.  You CAN boost your albumin level with diet, difficult though it may be.  Eat high quality protein at every meal--lean beef, pork, chicken, fish, eggs.   In addition to the supplements Restorer recommended, two more that your nephrologist can prescribe are LiquiCel and ProMod.  Neither of them are too tasty, but think of it as medicine and you'll be okay.  Albumin is very important in fighting infections and so worth every effort to keep it within normal levels.  All the best to you, malaka.

[MomoMcSleepy]

Do they have any idea how long you will keep your kidney o. Dialysis?  How fast are you declining?  I guess you could weigh that out, too.  I'd also be worried about additional trauma to your body.  I, for one, am not a fan of nephrectomy because I've had enough surgery.  Also, a lot of my doctors' solutions end up making things worse, but I am in a foul mood, so, grain of salt....

if you haven't got a lot of time with your kidney anyway, then wait it out?  Unless you have a living donor lined up, I wouldn't go ripping out a kidney doing some of its job still.  That's my two cents.  Will the albumin go back up once you've lost all function?  And they should hold your place, that's not fair!  Can't they just put you on hold, but you keep your spot?

[deniferfer]

Well let me ask you this how do you feel about being on D for a longer period of time?

When i was put on D my kidneys still worked and it took a few years for them to finally stop. Don't listen to the statistics about only living 5 years on D. I'm going on 15 years this month and going great!

Honestly I wouldn't terminated your kidney function. I would worry about if it could cause your body to like go into shock.

This best option would be if they could keep you on the list and allow you get your waiting time done.

   

[malaka]

The transplant center called me yesterday and announced that after my nephrologist called them, they were backing off.  My "penalty" now is that my start date for time on the wait list is the day I started dialysis instead of the day some months earlier I'd applied for transplant.
No big deal as that's only a matter of months. 

I am thankful to Dr. M. for calling and explaining that it was nonsensical to remove me from a 5 year average wait time list when in a year or two my remaining kidney funtion will decline to zero in all likelikood, ending the low serum albumin problem forever. 

If and when I ever get a call, they can check my serum albumin in a matter of minutes.  If I "flunk", the next person gets the kidney.  And, since this is so critical, they only want me in for testing once a year now.  Go figure!  Think the Post Office or DMV is in charge of rules and regulations for transplant list?  Seems like it to me.

[MooseMom]

It does seem awfully random!  As for the "penalty", well, we all have to go through testing once we've "applied" for a transplant, and that takes a fair bit of time.  It took 6 months for me to get all of the referrals necessary for each procedure.  I think my wait should have been back dated to the day I dropped below egfr 20, and I can provide evidence of that date (at least the date of the lab report), but I do understand that just because you are at a particular egfr or have started dialysis doesn't mean that you are necessarily eligible.

Anyway, the point is that you are now accruing time, and that's so important!  Give Dr. M our best regards!

[paris]

Keep the kidneys - don't go through that if there isn't a reason to remove them.  Like MooseMom says, it takes awhile once you start the transplant process to be active  - mine took 9 months.  Then when we hit a bump during the testing, they helped solve it and continued on with the process. ( 5 years of waiting)  I received a pre-emptive transplant - a total miracle in my life.

I know all centers are different,  so I don't quite understand some of what you have been told.

Hope it all gets sorted out.   

[MooseMom]

Also, any surgery carries risk.  Three years ago, I had a fairly routine, though major, operation, which went fine except for the fact that I had some problem with the general anesthesia and was in ICU for two nights just because of THAT.  A nephrectomy is major surgery.  I think too many surgeons forget that surgery is traumatic and should be avoided if at all possible.  I know the matter is now moot, thank goodness, but I think all of us can fall victim to overzealous surgeons.

[adairpete]

I would advocate for keep what function you have as you will lose function over time on dialysis. My creatinine has tripled since starting D 25 months ago. My transplant social worker said thats what usually happens-function goes down after people have been on dialysis awhile. However, even with such a drop in function, I haven't noticed a difference in how I feel. Glad they're keeping you on the list!

[malaka]

I spoke with my nephrologist again today when he showed up during dialysis.  He reaffirmed his belief that in less than 3 years, my kidney function would vanish and that it will take 3 to 5 years to get a transplant.  That's o.k. with me -- I just didn't want to be "expelled" from the transplant class of January, 2012. 

[malaka]

Finally, I got the confirming letter from the transplant center.  I'm still on the list and accruing time, if currently ineligible for transplant due to low serum albumin levels in my blood which are explained in the recent letter as greatly increasing the likelihood of clotiting and destruction of the transplanted organ. 

The bad news was that this letter also formally advises that the average wait list time for Type O cadaver transplant is 7 years.  Wow.