Extended protocol transplants

[stauffenberg]

The statistical phenomenon which is encouraging the use of these 'extended criteria' kidneys is that while the dialysis population continues to grow at an ever accelerating rate, the supply of kidneys for transplant has been stagnant since about the mid-1990s in most Western countries.  This means that there is a silting up of the dialysis population, and so the only way to give people hope of escaping is to start offering them third-rate kidneys.

As I have said before, if governments claim the authority to draft healthy people into military service, in which they might suffer loss of life or limb, often for wars which are either utterly unnecessary or of minimal value for enhancing the security and protecting the lives of the civilian population at home, then they should also exercise the authority, on exactly the same principle, to conscript kidney donation from healthy people to protect the lives of dialysis patients.  In utilitarian terms this makes perfect sense, since the total amount of human happiness in society would be increased if everyone had one kidney than if some people had two while others had none.

[mrhecht]

I'm guessing you might feel differently if YOU were the healthy person with the expendable kidney.

[stauffenberg]

The social philosopher John Rawls has an interesing thought experiment to analyze your suggestion.  If all the people of the world could be gathered together while in a state of complete amnesia about their actual fate in life, would they opt for a deisgn of society which required them to donate a kidney if someone had no working kidneys at all, in return for having the security that they would never have to endure the pain, distress, and lethal danger of living on dialysis?  The fact that only a very small percentage of the world's population ever experiences kidney failure would both reduce these people's worry that they would ever be likely to have to be a donor, at the same time as it would reduce their reason for wanting this protection, so the two considerations would cancel out.  I think people, fully apprised of the risks and unpleasantries of dialysis, would opt for living in a society with the greater security of enforced donation.

[MooseMom]

 

I signed up for EC transplant at my evaluation last year.  I am 54 years old, not yet on dialysis, and I would like to have a pre-emptive transplant if at all possible.

I received two calls for a possible transplant this past weekend.  I didn't get either of them, but I'd like to give you the details as explained to me and see what you all think.

The first was from a 62 year woman who had fallen, hit her head and had passed away.  I was told that her kidneys had 18% sclerotic tissue but that the remaining 80 some odd percent was good.  Since I was out of town and probably couldn't get back immediately, and since I was fourth on the list for this particular organ, I declined.  The coordinator told me not to feel bad because it was not an optimal kidney but that it was good enough.  So, if you were 54 years old with an egfr of 16 and wanted to avoid dialysis altogether, would you have accepted this kidney?

The second call I got was about a kidney from a 40 year old woman in another state who had been bi-polar and had overdosed.  Her kidneys showed AKI (acute kidney injury) from the overdose (I don't know on what she overdosed), but they expected the kidney to heal once transplanted.  I was second in line for that kidney.  By the time I got to return the coordinator's call, the surgeon had just walked in and said that the organ would not be going to me (I don't know if he thought it wasn't appropriate for me or if the person who was first in line was a better match or what.  I was told, and I quote, that it would not be going to me.)  So, again, if you were in my situation, do you think you would have accepted it?

One last piece of info.  I have just now learned that I have a PRA of 0, and with my A blood type, my wait may not be as long as we had anticipated.  The coordinator told my husband that I was "the perfect recipient".      So, with this added piece of information, would you be inclined to wait until a more perfect kidney came along, risking further renal deterioration and thus having to initiate dialysis?

I know there is no "right" answer to these questions and that ultimately, I'll have to make these decisions for myself, but I'd appreciate any of your thoughts; I'm sure there are things you all have to say that have not occurred to me.

Thank you so much.

[tyefly]

I choose not to go that route..... and it was because I am only 54 and I wanted to get a kidney that would last me the rest of my life...... ( crossing fingers )   What is interesting to me   is now that I have a transplant  I ask about the kidney   but was told that it was a 6/6 match and CMV neg.... that was it.... I was not allowed to be given any other infor.... no age.... nor sex  not why that person had died....  nothing.... my tranplant hospital said that this information is not given to people...yet I have read many people on here who knew alot more about their kidney donation..... I was told that I could write the donors family but that I should wait a few months as there was a healing process going on and it would be better to wait and let the family heal..... the only other information that I was given was that the kidney was on the small size and that often smaller kidneys are from younger people and they have the ability to grow.....  thats it......  I think knowing more information is good ...esp with the extended kidney transplants...It helps with decisions....   

[cariad]

I think it helps to know how selective your centre is with EC kidneys.

This decision you raise has actually presented a real problem to kidney allocation. They have found that surgeons (and presumably patients) will reject more kidneys as the patient gets toward the top of the list, knowing that they won't have to wait long for the next offer.

Isn't the longest wait in Chicago (the type O wait) only 5 years? (I know, I say only like it's nothing, but I was on California time when I was listed). MM, what is the average wait for type A, non-EC? Because you already have a year of credit behind you. I seem to think your GFR is slightly higher than mine was at transplant, your decline has been very, very slow. I never even bothered to get an access placed, even though the surgeons were all anxiety-riddled over that decision. My decline was slow, too. You've got the fistula, so if you do wind up needing dialysis, it's not like they'd have to place an emergency tunneled line.

You see where I'm headed? I would TOTALLY hold out for a non-EC kidney. However, do remember (and I know you are quite realistic about this and don't need the reminder) that there is no such thing as a test for a perfect kidney. You want as high a match as possible from someone who died from something completely unrelated to kidney issues (head trauma). However, just like some people are always poorly on dialysis, some never do well with transplant.

What level match were they offering in these two instances? It's a tough call, because they expect the kidney to recover, but what are they basing this on? How many successful transplants have they performed in this instance? I would wager not many. And the horror of going through a transplant only to be possibly told sorry! we were wrong! is enough to give me nightmares.

I would like to investigate stats on EC issues. Zach said the average EC graft lasted 5 years, but I think there are better stats to look at than the mean. I need to find some great stats for my upcoming presentation, so if I dig anything up, I'll let you know and do my best to explain what I think I'm seeing.

Oh, one last suggestion. If you do decide to hold out for a non-EC donor, do withdraw your EC interest form. No point in sending yourself round the bend with constant calls offering kidneys that you would then have to agonize over. You can always, always reinstate it.

[MooseMom]

I have my first annual appointment with my coordinator and the surgeon next month, so these are all questions I can ask.  I don't know how good the matches would have been; they didn't tell me that part, although they were pretty good about telling me the cause of death, the age of the donor and the general health of the kidney (neither of which were optimal).

I like my coordinator, but she is in the transplant business just like everyone else at the hospital, and I emphasize business.  I am not sure how much I can trust these people to do what is in my best interest.  I don't mean to sound all cynical and conspiratorial, just realistic.  Will they really give me the best advice?

Last year when I went for my initial evaluation, I was told that the average wait in the Chicago area was 3-5 years.  They did not break it down into blood type, and they didn't tell me that I had a PRA of 0 (maybe they didn't know at the time).  So, I'm going to have to get a better idea on this.

Yes, my decline has been very, very slow, but I don't know if I can extrapolate that to mean that my decline to a low egfr warranting dialysis will be equally slow.  That's part of the dilemma.  Generally speaking, the lower your egfr, the quicker the decline, but that's "in general."  I know of people on this board who had an egfr like mine that stayed this way for 5 years or more.  Who knows?  Maybe that's something else I can ask next month.

Thanks for that, cariad; I now have more questions on my list for next month!  And as you do your research, yes please come back and let me know what you've discovered.

[Deanne]

MM, we're twins. My GFR is 16, my blood type is A and my PRA is 0. I've turned down the expanded criteria list for now. My transplant center talked to me about it and suggested it was not in my best interests for now because I'll be an easy match for a perfect kidney. I think if I was nearing dialysis, I might've taken the second call - the woman who died of an overdose. With dialysis still being a ways out and since you've already gotten calls for potential donors, I think I'd hold out for perfection for now.

Congratulations on getting calls! That sounds exciting, even though they weren't the right one yet.

[MooseMom]

Oh, that's really interesting, Deanne; I appreciate your reply.  This gives me a bit more insight for when I see the coordinator next month.  The piece of information that makes this a bit more complicated (or, maybe easier) is the fact that my PRA is 0.  I don't know why they didn't tell me this a year ago.  I guess I've been thrown for a loop because I had pretty much put transplantation out of my head, and now I am being forced to really think about it.  I've had three calls (the first was from a donor who lived with his HIV+ girlfriend, so that was potentially high risk; I turned that one down) so far, but an entire year passed from the time of the first call to the second.  I don't know if my kidneys will hold out another year.  They might, but who knows?

After reading these replies, I am leaning toward holding out for a better kidney, but I will talk at length about it next month.

[monrein]

Given your situation MM, I would hold out for as perfect a match and, even more importantly, optimal condition kidney as possible.  The match thing is less crucial these days due to improvements in the drugs but as the perfect recipient, along with your "youth", I say you ought to be a little picky here.

[MooseMom]

Given your situation MM, I would hold out for as perfect a match and, even more importantly, optimal condition kidney as possible.  The match thing is less crucial these days due to improvements in the drugs but as the perfect recipient, along with your "youth", I say you ought to be a little picky here.

Well, you know that I don't really believe in portents and omens, but I can't escape the feeling that getting these calls while I was in LV, and thus not being able to accept the organs, might be Someone's way of telling me to wait.

But there is one thing that is in the back of my mind, and it is this...while it is true that I'm not on dialysis yet, my egfr is pretty bad, and I have to wonder about the accumulative effects that such poor renal function is having on my body as a whole.  CKD is a dangerous disease, and that danger is greatly magnified when your egfr is as low as mine.  I've had fsgs for 20 years now, and my egfr has been in the 20s or lower for at least 7 of those years.  For how long should I let my body be assaulted in this way?  Is it safer for me on the whole to stay as I am or to get a less than optimal kidney that will at least give me better renal function than I have now?  Will the drugs post-transplant outweigh any benefit I'd get from an EC kidney?  Any thoughts from anyone?  Thanks.

[MooseMom]

I thought I would pass on some information I received during my appt this week.

First, my tx coordinator was on holiday, so I saw another coordinator who happened to be the one who phoned me with possible kidney offers while we were all in Vegas.  The first thing she said to me was that she wanted to discuss ECD kidneys; that made me feel good in that I thought she was really looking after my interests.

She gave me a list of questions to ask should an ECD kidney come available and I got another call...

1.  How old is the donor?
2.  How did the donor die?
3.  Is there anything in the donor's medical history that would lead one to suspect kidney damage?
4.  Can I reasonably expect the kidney to begin working immediately?
5.  Was the biopsy good? (what is the percentage of healthy tissue?)
6.  What are the pump numbers?  (was there good flow/perfusion?)

She also explained to be sure to ask these questions if the donor died of a stroke as stroke is often indicative of hypertension, and we all know what hypertension does to kidneys.

If, after all of these questions, I was still undecided, I should ask the coordinator, "If this were you, would you take this kidney?"  She explained that coordinators are not allowed to answer this type of question directly as they are not supposed to actively influence a patient's decision, but she said that a patient can usually "get a vibe" from the coordinator that might steer them to a decision.

Lastly, she explained that ECD kidneys were good options for people with co-morbidities that made dialysis problematic.  Not everyone does well on dialysis, as cariad pointed out, so if you are really struggling on D, an ECD kidney may be a good choice.  The problem is that in general, they do not last as long as non-ECD kidneys, but many last long enough.  Perfect kidneys have been known to fail, so while you can be guided by statistics, they don't always foretell the future with 100% accuracy.

I told her of my concern regarding ECD kidneys and pre-emptive transplantation.  I know that the first year after the initiation of dialysis can be difficult.  Mortality rates on D are higher in that first year.  Just the initiation of dialysis in and of itself is risky.  So, my question was what would be better...accepting an ECD kidney (and you know they are not going to throw just any old kidney into you!) and avoid dialysis altogether, or endure the initiation of dialysis and wait for a more perfect organ?  As I expected, she wouldn't answer that other than to say that I was in a "grey area".  That's the kind of decision you make based on the best info you have at the moment, never knowing if it is really the right decision in the long run.

I hope this is helpful to someone.

[ToddB0130]

Yes ....VERY interesting and helpful information.  Thanks, MooseMom