Did I make the right decision?

[MooseMom]

I've been listed for only two months, so I was blindsided by what happened to me this morning.  My DH and I were backing out of our driveway, on our way to a long weekend in Michigan, and I checked to see that I had my cell phone and had it turned on.  I saw that there was a voicemail, and I was shocked to hear that it was from my transplant coordinator.  I quickly returned her call, and she proceeded to tell me that there was a "high risk" kidney available.  It was from a 40 year old man who had been living with his HIV positive girlfriend.  The coordinator told me that he was hep C negative and had been testing himself every three months for HIV.  It takes 3 weeks to get results from an HIV test, and 3 weeks had not yet passed since his last test, so no one could guarantee that he was still HIV negative.  His girlfriend said that he always used protection when having sex.  I asked why the coordinator was calling me (I couldn't be that far up on the list after only 2 months), and she explained that since this was a high risk donor, the listing rules didn't apply, making her free to call anyone who matched the donor's blood type.

I turned down the kidney.  I had to make a decision right then and there, and my feeling was that since I am still pre-dialysis and my labs looks really good for someone with a gfr of 15-18, I'm not desperate enough right here, right now to take such a gamble.  I'm not going to spend an inordinate amount of time rehashing my decision because it is now all irrelevant, but I wanted to tell you all about this and get some input/thoughts/suggestions from you in case this happens again.  I was just so unprepared, and I want to be more prepared next time, just in case.

Thanks so much for your replies.

[okarol]

I think these types of calls really help prepare your for the next one.

You don't mention what caused his death, and that would be good to know.

My gut feeling: if this is what we DO know, what don't we know?

Why was he testing for HIV if he always used protection?

I thought about this for about 5 - 6 minutes, which is about as much time you get, unless you decide to call back.

I would have made the same decision.

[gothiclovemonkey]

He probably got tested often, because condoms arent full proof. I thnk since u arent yet on dialysis, that you probably made the right choice for you. Im honestly not sure what id do. Probably would take it, I mean, it would suck royally to get aids, but i hate dialysis that much!

[jbeany]

I'd have done the same.  HIV tests are still unreliable enough that I wouldn't want to risk it.

And honestly, I'm not sure how confident I am that a condom alone would protect you from HIV transmission.  Condoms rip too easy.  Plus, well, I don't know about anyone else, but I'm *ahem* entirely too sure it's pretty easy to bite someone in the heat of the moment....

[Riki]

I don't think I would have taken it either.  I don't think I would want to take the risk of becoming HIV+ myself.  I've got enough BS to deal with, I don't need that too..

As far as I'm concerned, good choice.

[gothiclovemonkey]

Plus, well, I don't know about anyone else, but I'm *ahem* entirely too sure it's pretty easy to bite someone in the heat of the moment....

hehehe naughty! But, unless skin is broken, u wouldnt be infected from a nibble... and even if it was, it would be a slim chance. It *can* be transmitted via saliva, but it would have to be BUCKETS of saliva....  I can understand not risking it, but still... it IS possible to have a relationship with someone without getting it. So i think if i were offered i would take it, but i really really hate dialysis that much. Only because it sounds likely he doesnt have it.

[RichardMEL]

Your gut instinct is usually the right one. Were I in your situation, pre-dialysis, I would not have taken it either. Just too many unknowns and "maybes" there for it to not be worth it (and I'd wonder why the TC called offering that high risk kidney....). If I was much older and totally desperate for any chance I might take it, but even if *I* was offered that kind of kidney, right now, where *I* am at I am pretty sure I would say no.

It must be so hard to be put on the spot like that - specially when you don't expect it at all!

I think you did the right thing - at this stage is it worth the extra angst and stress of wondering about HIV and anything else on topof the stress of a transplant?

Good luck that the next call will come along sooner rather than later and it will be a no risk kidney!

[MooseMom]

My coordinator called at 6AM, but I didn't receive/return her call until 10, so I assume she had been calling potential recipients for 4 hours.  I am certain that there are people waaaay ahead of me on the list, so I am surmising that these were difficult organs to place.  A lot of patients must have come to the same decision that I did.

Imagine, though, being the girlfriend.  Your boyfriend has just died, and no one wants the generous gift of his organs because of a disease that YOU have.  That must feel awful.

I agree with gothic that he probably wasn't HIV positive; it isn't that easy for a man to become infected by a woman through sexual contact only.  But treating HIV is diametrically opposed to treating organ rejection; in the first instance, you want to prop up the immune system while in the second, you want to dampen it.  So I would think that for a transplanted patient, HIV would quickly morph into AIDS (I may be wrong here, but that's what common sense tells me.).  I had a cousin who died of AIDS, and it was truly horrible.  I don't know exactly how the transplant unit knows how vigilant this donor really was other than from what his girlfriend told them, and I'm not sure how reliable that is.

Have any of you ever had to say "no" to a kidney?  If so, can you tell me what your thought process was?  Thank you.

[ChickenLittle56]

MM, I would have the conclusion as you and others have stated in this post. I have been on the list for 8 years but thats because I've had injuries and illnesses along the way.

[Chris]

Have you been asked prior to the calling about not getting high risk donors (can't think of correct wording). If I remember right, your asked and then sign a form so you do not get placed on the list for high rick donors.
 
You made the right choice, it is your body and you have the ultimate right to choose what goes in.

[Jean]

I think you made the right decision MM. What is the sense in going thru the surgery and all else you have to do, knowing there may be an "invisible" ailment attached to it. No, I would not have taken it either.

[RichardMEL]

Have you been asked prior to the calling about not getting high risk donors (can't think of correct wording). If I remember right, your asked and then sign a form so you do not get placed on the list for high rick donors.
 

lol@high rick donors - you talking about me mate??? 

Seriusly though I think you're right. I think it's called "extended criteria" transplants?! Everything I've read about that yeah you had to explicitly declare you wanted to explore that option.

I don't even think that sort of thing is an option down here. I doubt my renal team would accept a kidney like that given I'm relatively young (I don't feel like it!) and wel yeah.

[MooseMom]

I may be wrong, but I am thinking that "extended criteria donor" is different from a "high risk donor".  I was urged to put my name on the extended criteria list; I could always say "no".  An ECD is either over 60 yrs old or is 50-59 with a history of hypertension, died from a stroke or has a creatinine level over 1.5. 

[sullidog]

I would of trurned it down do to the possible HIV.
Troy

[MooseMom]

I guess it's one of those things where you will never know if you've made the right decision or not, but you know, this has been a really, really, really, really crappy year, and I just could not take the chance.  But the experienced showed me how woefully prepared I am for such a call. 

[Riki]

It's hard to prepare for a call, cuz you never know when it's going to come.  I don't think we have extended criteria donors here either.  I do remember my neph when I was a kid saying that my transplant was high risk, because it wasn't necessarily the best match, but it did serve me well.  I had it for 8 years.  I think the biggest reason I got the kidney that day was because I was already in the hospital at the time.  I used to go in for a week every 2-3 months, not that there was anything wrong with me, it was more to give my parents a break.  I really don't think I would have gotten it if I hadn't been there.

[paris]

MM, I think we all ask ourselves that question no matter what the situation.   I wouldn't have taken a kidney that could be HIV infected.  Mainly because,  we work with HIV and Aids patients and see first hand the meds and care that goes along with the disease.    But, I did sign the extended criteria list, mostly because of age and PRA.  My donor did have hypertension.  But when you see your co-ordinator and surgeon in tears because this kidney actually will work for me --- I felt confident to take it.  They also reminded me that I may never get another chance.  So if it last 5 years,  I am thrilled.  Everything is a bit of a gamble.    But, I do think you did the right thing.  It will be worth it to you to wait for a really good kidney.     

[MooseMom]

With CKD on the rise, and with the dialysis population increasing very quickly, I don't know how rational it is to wait for the "perfect kidney".  But I don't think that a kidney possibly infected with HIV is acceptable by any stretch of the imagination.  I had never heard of high risk organs being offered, but as long as the recipient is informed, then it should be the recipient who makes the final call.  That's what I did.  I was grateful for even having the opportunity. 

[paris]

I should have stated that better.  I meant the "perfect kidney" for you.  My kidney would by no means be "perfect" for most people on the list.  But for a hard to match patient, it was perfect for me.   Being the 4th of 4 hard to match patients to be called for that not quite perfect kidney, I knew there was no chance.  But, because I was the hardest to match, I got the kidney.   I think sometimes we forget how fine tuned the method is to decide who gets the kidney.   I have no idea if I had the most time on the list (5 yrs)  --- just that I was the only one who didn't react to this kidney.  I do know they didn't call anyone except hard to match.   Never thought I would get a back up call, let alone a real call.   And, yes, they asked me what I thought about accepting the kidney after they explained the situation.   You can always say no, and you should, if for any reason you aren't comfortable.   The good thing is, someone else will get a chance.   It may be the right one for someone else. 

I hope the right one comes in a timely fashion for you.  Waiting is so hard.        

[MooseMom]

I knew what you meant, paris.   I was just speaking in general terms.  And yes, I am hoping that those kidneys (and other organs) found a home.  That man still may have saved many lives!

[rsudock]

Hello all,
 I met with a transplant surgeon a few months back (hoops to jump through to get back on the transplant list) and he said high risk kidneys are also kidneys from folks who have died in jail or have had a recent tatoo! I even remember mentioning that people are offered kidneys with hepatitis as well, but they have to tell you the kidney is high risk before they transplant you. I mean no I wouldn't accept a kidney with a possible risk to HIV but some young person who just got a tatoo a month ago....sure why not!

xo,
R

[MooseMom]

I am guessing that they believe that people with recent tattoos might be at increased risk for developing hepatitis?

[Riki]

I am guessing that they believe that people with recent tattoos might be at increased risk for developing hepatitis?

That would be my guess

[billmoria]

It was your decision to make and for that reason alone you made the best choice for you. It is nice to have IHD to talk and chat and pass along information. However, like so many other times in life, in the end we have to make choices for ourselves.
Good Luck
Cheers  Bill