Nervous about transplant

[SweetyPie]

From the title im sure you can see that i am nervous about transplant. Ever since i got the news about being on the list I cant stop thinking about it. I want this kidney to last. I freak pit about the smallest things. Can any of you guide me through the process of a living kidney donor? What happens? Do they call you or do you meet with the doctor first? Details please

[iolaire]

Can any of you guide me through the process of a living kidney donor?

I don't really understand the question?  Generally when you are on the list you are waiting for a cadaver kidney, or a kidney that is harvested and quickly inserted into you from a donor who soon will be a cadaver. 

Feel free to read my transplant story re the cadaver kidney - http://ihatedialysis.com/forum/index.php?topic=34003 - I go into lots of detail on what was a fairly normal cadaver kidney which had been on ice for a fair amount of time.  I was at GW not Georgetown .

[SweetyPie]

Sorry about that. I wanted to know the process of getting a kidney transplant when its from a living donor. Like do you meet the surgeon first? How quickly do they schedule the surgery. But i see you have a cadaver kidney so I think you might not know much about the living kidney donor process.  My surgeon thought living donor would be the best option for me.

[MooseMom]

Do you have a donor already lined up?

[Paul]

I have not been through the process, but I went to a talk on the subject and what they said was that both you and the donor see the surgeon and get told about the process and asked a lot of questions. They then speak to each of you alone, they want to check that the donor (A) Really understands the sacrifice they are making. (B) Really wants to go through with it. (C) That you (or someone else) is not putting pressure on the donor (D) That the donor is of sound mind.

After that there are a lot of medical tests for both of you to check that you are BOTH healthy enough to survive the operation and are compatible with each other (if you are not compatible most areas have a donor swap program).

Then finally they re-question the donor to make sure that he/she still wants to go ahead.

This is not a quick process, they want to be 100% certain that the donor understands what he/she has agreed to, what the risks are, what their life will be like after the operation and that no pressure or payment is taking place.

[MooseMom]

My surgeon thought living donor would be the best option for me.

Well, yes.  Every surgeon thinks that!

Paul has it pretty much down pat.  If you are listed, that means you have been deemed healthy enough to be able to endure the surgery.  It is not easy finding a living donor who succeeds in passing all of the testing.  The timing of everything largely will depend upon how quickly the donor gets the tests done.  You will completely in his/her hands.  If your donor starts to have second thoughts, s/he might not be quite so eager to get all of the testing done on a timely basis.  No one will talk about scheduling before you find a donor who has been cleared.  Once you find one, oftentimes it will be that donor who decides the schedule because s/he may have to take time off work or school.  Your prospective donor will meet A surgeon but not necessarily THE surgeon who will end up performing the transplant on the day.

[iolaire]

Its my understanding that you basically give the potential donor some information including the transplant center's contact information and its their responsibility to call in to the transplant center to see if they qualify to start the testing process.  Some people have potential donors that just work, other people may have many potential donors but still have a hard time finding someone who will be compatible.  Ideally your transplant center should provide you with handouts and/or instructions for your potential donors on how to start the process.

They want you to find a donor because its most likely to be a kidney that lasts longer and is better quality.  Plus it adds an additional kidney to the pool so you and they don't need to wait for a cadaver kidney that matches you at a point where you qualify for the offer.  If you have potential donors its the best way to go.

Also I should mention that GW at some point in a group education session claimed that some altruistic donors showed up and offered kidneys.  I found that idea as some sort of marketing gimmick to people who are scared of the wait - as if maybe you don't need to wait to get to the top of the list because someone might come off the street and offer the program a kidney that you end up getting.  I'm sure the odds of a cadaver kidney is much higher.  Especially if you have a long dialysis history that puts you years ahead of the new people.

[SweetyPie]

No donor lined up. On the list will get a donor when available.

[SweetyPie]

Will get a donor from the list. I am not taking a friends or families kindey this time.

[iolaire]

Will get a donor from the list. I am not taking a friends or families kindey this time.

That's what I did. That usually means you will get a cadaver kidney.  They are still great but they might start filtering and lowering creatinine a tad slower than a live donor.

And when you look at the kidney longevity it's slightly shorter. This is a made up number but it's something like 13 years for cadaver on average versus 15 for living donor.

Remember averages can be deceiving.  Take two people, one looses their kidney immediately, but the second lasts 30 years, that's a 15 year averages longevity.

So hope for being on the far upper end of the kidney longevity average.

[SweetyPie]

No I wont be getting a cadaver kidney. During the transplant evaluation theres a paper you sign if you accept cadaver kidneys and the doctor made sure I didnt check the box. There are live donors that just donate and also theirs this thing called paired exchange which is also a way to get live fonor kidneys.

[SweetyPie]

Will talk to coordinator about this since I am confused I could be mistaken and could receive a cadaver kidney.

[Simon Dog]

Will get a donor from the list.

The list of which you speak is composed exclusively of dead people.

No I wont be getting a cadaver kidney.

Oxymoron alert, when combined with your first statement.

Will talk to coordinator about this since I am confused I could be mistaken and could receive a cadaver kidney.

Unless you supply the donor, you will be receiving a cadaver kidney.  The concept of "Wait list" does not exist for live donors. 

With VERY rare exception, you will not be receiving a live donor kidney unless you have arranged for the donation.   We're talking AP news item rare.  Sure, there is the rare case of the altruistic donor, but it is exceedingly rare for someone to contact a transplant center and say "give my left one to anyone, I just wanna be cut".   You are almost certainly not going to get a live donor kidney by simply not checking "will not accept cadaver".   It doesn't work that way.   In fact, I doubt that is what the box actually said.

If you arrange a donor, you will be aware of an extensive workup to make sure the donor is suitable, and will not be put at risk by the procedure.   Losing a recipient (as in letting one die) on occasion is OK for a transplant center, but losing a donor can get the entire program shut down.  This is a bigger issue for liver transplants as the surgery is riskier for both recipient and donor.

You will be told a bit about any kidney offered and given a few minutes to decide if you want it,  Think this out ahead of time; you can't tell the transplant surgeon "I'll get back to you tomorrow".    Key points are cardiac or brain death; regular or high risk donor; KDPI (kidney donor profile index) EPTS (Expected Post Transplant Survival); the later determining what range of KDPI you are eligible for.  A high risk donor is one who is a known drug user; has an unknown history; or has done any recent jail/prison time (might have dropped the soap). Nucleac Acid Testing detects HIV with a few days of infection, so that risk is now minimal even in the high risk pool.

Perhaps your doc made sure you did not check the box stating you would accept a kidney with KDPI >= 85 (1-100, low #s better) which was formerly termed an "extended criteria" kidney.    You have to explicitly accept one in this high range, and doing so it not generally recommended for younger people who are tolerating the big D.  Higher KDPI kidneys have a shorter post transplant half life.

paired exchange which is also a way to get live fonor kidneys

True, but you need one of the donors in the paired exchange (or exchange chain) to say "I am donating to the pair/exchange so Aaisha can get a kidney from one of the other participants".   You don't get assigned to a pair/exchange unless someone is making a deposit to the organ bank on your behalf.  Thing of it like a bank account where another depositor allows you to withdraw from his/her account.

With all due respect, it appears that your transplant center has done an inadequate job of educating you.   If they didn't discuss EPTS, KDPI, what it takes to get an < 20 KPDI kidney, high risk donor pool, NAT HIV testing, etc. they left our important stuff.

[SweetyPie]

I see what you mean. I will talk to the coordinator. Thanks for explaining

[Paul]

Aaisha.Dar Re-reading this thread one thing has crossed my mind. What country do you live in? I, and I think all other posters have been assuming USA, however your posts in this thread make me think you could be elsewhere. You do not have to answer this question, but someone may be able to give you a more accurate answer if we knew which legal system you live under.

[SweetyPie]

I do live in the US, virginia to be exact. This whole discussion has got me thinking though. Not sure I want to go on with the process of its a cadaver kidney. Please No one take offense to this at all but I feel with my situation and how my first kidney failed I wouldn't want to go through the disappointment again. It was tough on me i was only 13. I feel if i am going through such a big surgery and going through a lot I would want the kidney to be at its highest survival rate. Will let you guys know what the coordinator says if i talk to her on monday

[Paul]

I do live in the US, virginia to be exact.

In that case my thoughts were wrong, sorry. I thought you may have been located somewhere like Turkey where is would have been reasonable to expect the hospital to find you a live donor.

[iolaire]

Someone will correct me but basically you sign a document that you will or will not receive a post death kidney. 

I believe that means you will receive a kidney that comes from a donor who is brain dead but they have the donor on life support. So the kidney did not experience the trama of death prior to being removed from the body. The donor will still die at some point. I believe the kidney still may be on ice but it didn't have the trama of death.

I received a kidney that had experienced death.  It's superior to receive kidneys that do not experience death.

[Simon Dog]

The donor will still die at some point. I believe the kidney still may be on ice but it didn't have the trama of death.

Brain death is death.  The form would never refer to such a donor as alive.  The term for a brain dead body fully stopping is cardiac death.

Someone will correct me but basically you sign a document that you will or will not receive a post death kidney.

My bet is on the form stating she will not accept an extended criteria >= 85% KDPI kidney. It will be interesting to hear from her after she talks to her coordinator.

somewhere like Turkey where is would have been reasonable to expect the hospital to find you a live donor.

If they were talking the hospital finding a live donor, there would be a substantial fee.   Iran is the only country where it is officially legal, however, they used to (and still may) sell executed prisoner organs at BEK transplant in Shanghai.

[MooseMom]

Aaisha.Dar, if you don't want to accept a kidney from a friend or family member, then you will be left with only two options.  You can go on the list and wait for a cadaveric donor, or you can go on the list and wait probably a much longer time for an altruistic donor as Simon Dog explained on a previous post in this thread.

Simon Dog and iolaire are probably right in suspecting that the form you signed was meant to indicate that you would not accept an "extended criteria" kidney, which, at your age, would be understandably sub-optimal.

Clearly there are some grave misunderstandings between you and your transplant coordinator.  That you would think that you could pick a live donor from a list tells me that perhaps your team has not adequately informed you.  Simon Dog's post(s) are well worth re-reading.

[iolaire]

Thanks Simon Dog for the term, yes I think the signed document relates to receiving post "cardiac death" kidneys or not. When I was presented with the choice last year at GW it was that.

Five years before at INOVA I signed something about considering higher risk kidneys from drug users, people who had been in prison or who have had unprotected sex.  I remember that document at GW last year. 

[iolaire]

Someone will correct me but basically you sign a document that you will or will not receive a post death kidney.

My bet is on the form stating she will not accept an extended criteria >= 85% KDPI kidney. It will be interesting to hear from her after she talks to her coordinator.

I think she is rather young and would not be offered those high KDPI kidneys.

[Simon Dog]

Simon Dog's post(s) are well worth re-reading.

Thank you for the vote of confidence.

[Paul]

If they were talking the hospital finding a live donor, there would be a substantial fee.

Well, yes. I wasn't suggesting otherwise.

Iran is the only country where it is officially legal

I believe it is legal in Turkey too, which is why I mentioned that country. However this is only hearsay (when I was first diagnosed with kidney disease I was advised by slightly amoral friends to move there or become a "medical tourist" there, I never bothered to check the facts they quoted at me because I don't intend to do that). I am also under the impression that there is one or more Asian country where it is legal to sell one of your kidneys.

[Simon Dog]

If you get a transplant outside a Medicare approved facility (ie, buy one on the foreign market), you do not get any financial assistance from Medicare for post transplant drugs.