Living Donor Transplant Screw-up

[Mars]

Greetings,
This is my first time on this board.  I happened to stumble across it tonight. I would like some others opinion on this situation...

My husband has been on dialysis 4 years.  He had high blood pressure (not so much anymore) that they thought was responsible for his kidney failure.  Through the work-up they found he also had a stage 1 renal carcinoma.  That kidney was removed.  Since he only had 25% function then, the surgery pu thim on dialysis.  He has done pretty well, but the last year has lots of pain in his legs and feet - he thinks some of it realted to fluid that is not being removed  (Anyone else have this?) Three weeks ago he got a call (his first) that there was an anonymous donor who was a great match for him.  He had some "routine" tests, which included an echocardiogram/stress test.  They had never given him one before.  His transplant coordinator told him all was a go, not matter what the tests showed.  Friday afternoon (June 9th) he was told by the transplant dr that he might have some heart blockage and that it wasn't likely they could to do the surgery.  - That he would have to talk to the cardiologist again.  His transplant coordinator could not be reached.  Monday morning we went in thinking there was atill a chance of him having the surgery on Tuesday - or rescheduled -  and ran onto his coordinator by accident - she told him the kidney had already went to someone else..  We were very upset and angry.  She told us that that was the "protocol", which I really didn't give a rip about at that time.  It turned out he did have a blockage that needed a stent - calcium, probably from dialysis.  Although I recognize the risk of that, I am not sure it was bigger than him staying on dialysis.  The big thing is they should have (in my opinion) done these heart evaluations much sooner - he goes in every 6 months for check-ups anyway (he has more local care, as well).  Also, I think his coordinator should have called him and explained what would happen - not just blurt out that it was given to someone else.  The other strange thing - and this is just a gut feeling...The dr he talked to on Friday was not his regular nephrologist - and he kept asking him how long he had been on dialysis - just made him feel like he wasn't worthy yet, or he had someone else in mind.  When I was waiting for him to come back from dialysis before his supposed transplant meetingm, this dr walked into the waiting area and  a man about 70 jumped up and said, "Here is the guy I want to thank.  Thanks for arranging for me to get that kidney."  All I could think of is that was my husband's kidney - and this dr wanted it for his patient, so no one tried to help my husband out.  Now I may be totally wrong about how that appeared, but it was a strange gut feeling - and this was before we were told someone else got it.  I don't begrduge this other man getting a kidney - but the way this happened to my husband was a major screw-up - and this from a renowned clinic that we have always been satisfied with in every other way.  My husband had a stent put in and another small blockage ballooned and is doing ok, but is off the list for 6 months due to taking plavix.  Granted it was good they found this, but it should not have happened this way.  My husband seems more of the mind to let it go at this point.  I think a pointed letter needs to be written to the transplant team.  How would the rest of you handle this?  I just can't belive he was so close and had the rug pulled out from under him.

[Rerun]

Welcome to the site Mars.  Well, there are two ways to look at this.

1. Let it go, and let the guilt build and maybe he will be the  next one to get a living anonymous donor.

2. Write the letter and piss them off and maybe never get called again.

I'd do the second one, but I've had my kidney and don't think I'll ever get another one.  But, remember they hold the keys. 

Please come post here more.  You are my kind of person.   

[hyperlite]

Mars, I agree with you, that the way they handled the situation seems a little "fishy"...especially not calling you to let you know, and only doing so in an informal manner (blurting it out at the hospital...). But I have to agree with them for at least not giving your husband the kidney until his heart problems had been taken care of. A kidney transplant is not a mandatory surgery. They will only do it if you are in "good health" (kidney problems aside). But yeah, I think they should have approached the situation in a much more professional way.

[Sara]

I think I would write a letter expressing your disappointment at lack of communication from your transplant coordinator, and also ask what they plan to do to make sure this type of thing doesn't happen again.  I'd also be asking why he wasn't getting that type of testing earlier.  Then again, we are only in the beginning of the tranplant list process, so I don't have the experience that others here do.

[kevno]

Hi Mars,

Your Husbands pain in his legs needs seeing too as quickly as possible. To make sure he as not got calcification of the veins. Which is why I get a lot of pain in my lower leg and feet. It is easy to find out, he needs an an-geogram. Mine are so bad now that the surgeons wants to amputate the lower part of my right leg. Will not go into detail just now have posted about it before.

Kevno

[livecam]

Mars I know you are upset but I can understand why your husband didn't get the kidney.  You said that he has been on dialysis for four years but how long has he been on the transplant list?  My transplant center wanted a stress test once per year and almost didn't transplant me because my previous test was about 1 year old the day they called.  When they take someone to surgery they want to be very sure that a cardiac or other problem isn't going to kill the patient on the table so with the problem your husband had not going ahead was the right thing to do.  He could have done fine but maybe he wouldn't have so postponing until his problem could be fixed really made sense.  When a kidney has been removed from the donor and is ready for transplant it can be kept on ice only for a short period of time. It made sense to transplant another person rapidly before the kidney became unusable for transplant.  Now that your husband has had his cardiac problem addressed he should be in much better shape for a transplant.  The fact that he has aleady been called suggests that he might not be too far from another call.  Try to keep him in as good shape as you possibly can and assume every day could be the day you get the call.  Keep him away from sick people because any cold, flu, or other infection will cancel a possible transplant.

[Panda_9]

If you are on the transplant list, you are supposed to be having regular tests of the heart and what not, to make sure you are fit for a transplant. Without these tests they cant just whack the kidney in and hope for the best. If you are unwell they wont do it, and the kidney will go to the next in line. I don't know why your husband has not had any regular testing prior to this. It really does pay to educate yourself as much as you can about this illness, so you can get things done if they aren't being done as they should be. If the donor is someone who has passed away, the surgery cannot be "rescheduled". The kidney can only last so long prior to surgery. I'm not sure on exact figures, but from memory I think it is only 6 hours.
At least this caused them to find the problem with your husbands heart, as if he never got the call in the first place, it may of went undetected and me might not be here today.

[angieskidney]

I looked at this thread because it said Living Donor Transplant Screw-up, but this doesn't seem to be what is referred to as a living donor but a cadaver transplant. I wanted just to verify that this was either a call saying a cadaver kidney was found or if infact a live donor was found. If it was a cadaver kidney then yes, it has to be transplanted within 72 hours and the kidney has to go to the person who is a best match for the kidney. It is not 100% first come first serve.

I do feel for you but it really has more to do with communication between medical staff and patients. You should NOT have been kept in the dark about that when you had very valid questions to be answered. Sorry you had to go through that. It must have been a disappointment to find out that way. Especially when you felt it could have been prevented or dealt with differently.

[Mars]

Hi all,
Thanks to all.  I appreciate your comments.

No, this was NOT a cadaver transplant - it was a living anonymous donor - one of only 9 they have had in the history of their transplant program That is why we thought we had some time to at least ask some questions and consider some  options. Had it been a cadaver kidney, I would have understood the urgency to pass it on to someone else.  As it turns out, beign on plavix for the stent puts him ont e "no-call" list for 6 months anyway - but again this is something we did not know until it was over.  Had we known the echocardiogram was a prerequisite for the transplant, we would have made sure it was done long before - he had never had one.