Live Donor Nightmare

[aintnorock]

So, here's my nightmare.

I'm on the list, at the top.  I've been called twice, both times the kidney was no good.  Out of the blue, a friend of mine sends me a note on Facebook and says that God woke him up at 2 am and told him, "Why are you praying for Carl to get a kidney when you have a perfectly good one he might be able to use?"  I know this friend well, and know that if God woke him up, it really was God.  So, he contacts my transplant center and they tell him the process may take 6-8 weeks to get tested and schedule surgery.  I said sure, go for it, and took my name off the cadaver list while he was being processed.  He is a match, has the right blood type.  At the beginning, they told him 2-3 week recovery, tops.  Long story short, it's going on 14 weeks now, they still haven't approved him and he's no longer a possibility as he has to leave the country for 6 months.  The last thing they told him was that they still wanted to do more blood tests because he's spent a lot of time in South Africa (they knew this way up front, yet waited 10 weeks to decide they needed more blood tests.)  They also told him that he had to stay in the country 8 weeks after surgery.  Hello!  We're talking Johannesburg, not the jungle - you know, the place where they did the first heart transplant?  Best doctors in the world?  I'm beyond infuriated.  And now, to top it all off, while I was waiting for him, I've run out of leave at work, so I have to take vacation time to go to dialysis.

Moral of the story?  Be very careful and know what you're getting into with a live donor.

I'm back on the cadaver list.  Got called last night.  Cross match was positive.  3 strikes, how many more do I get?

[Romona]

Hang in there! 

[willowtreewren]

Carl, we have tried with three live donors. Zip so far. It can be very frustrating.

I feel for you.

Aleta

[okarol]

Sounds like you've got an inexperienced transplant team. Some hospitals do fine with deceased donors but are not well versed on how to process a living donor.

Jenna's hospital did not remove her from the list at any time during the 2 years we had 9 donors tested. They said they would keep her active and if she got a call even the day before her living donor transplant they would give us the option of making that choice.

I hope your miracle comes soon. It's a frustrating process but it sounds like things should work out.

If it were me I would explore another hospital if you want to pursue the living donor. A new team might look at your friend in a different light.

Good Luck!

[aintnorock]

Sounds like you've got an inexperienced transplant team. Some hospitals do fine with deceased donors but are not well versed on how to process a living donor.

Jenna's hospital did not remove her from the list at any time during the 2 years we had 9 donors tested. They said they would keep her active and if she got a call even the day before her living donor transplant they would give us the option of making that choice.

I hope your miracle comes soon. It's a frustrating process but it sounds like things should work out.

If it were me I would explore another hospital if you want to pursue the living donor. A new team might look at your friend in a different light.

Good Luck!

Next nearest hospital that my insurance would pay for is 6 hours away.  Besides, my leave is so screwed up now at work, that I can't afford to start over, I just need to get the right cadaver kidney.  My live donor will be in South Africa for 6 months, and I should get a kidney before he's back.

I don't think the team is inexperienced - they are the 2nd leading teaching hospital in New Orleans  but I wouldn't want to bad mouth them.  You can figure it out yourself if you wanted to.

[Sunny]

I was kept on the cadaver transplant list too when I had a living donor tested. Hopefully you are right and you will get that cadaver transplant soon anyway. I'll bet the hospital just wanted to be extra careful which is why they wanted more testing done on the living donor.Good luck.

[paris]

I have been on the "list" the entire time I have had potential donors tested. The testing takes quite awhile; always longer than they tell you.   And there is always one more test.  But that is ok. You would want your donor to be in excellent health before  donating.  Could the travel ban have anything to do with the insurance issues?  If he runs into problems in South Africa with post recovery, your insurance may not be too happy with him being so far away.  Just a thought.  It is always amazing that there are people who are willing to donate.  I hope the next call you get is your kidney and there are no problems.

[aintnorock]

Could the travel ban have anything to do with the insurance issues?  If he runs into problems in South Africa with post recovery, your insurance may not be too happy with him being so far away. 

If this was the case, then my insurance would have said something.  It wasn't my insurance, it was the transplant team.

[staceyand joe92]

I had a donor who offered to be tested....even completed most of the testing and then decided she didn't have the time to recover from the surgery.  I also had one offer to be tested but backed out at the last moment because someone showed her some article online that scared her.  I am thankful for all that offer but I don't think the donors realize how much we invest in the chance that we will get to live a normal life. I wish my donors would have considered this before they offered to get tested.  It's heartbreaking for all involved when it doesn't work out.

[Hanify]

How frustrating.  To be so close.  Good luck with the list - and pay on our gratitude to your friend.  What an amazing person.

[petey]

While I was being tested to be a live donor for my Marvin (my testing took about 6 weeks total), Marvin's name was not removed from the UNOS list.  In fact, they told us that if a cadaveric kidney came for Marvin the night before our scheduled transplant surgery, that I (the living donor) would be scratched so Marvin could receive the cadaveric donor (didn't happen and I was his donor).

Also, Marvin's had 9 other living donors tested, and he didn't come off the list during any of this time, either.  (None turned out to be a "go" for Marvin, so it was good that his time continued on the list.)  Did your transplant center tell you you HAD to come off the UNOS list during your potential live donor's testing?

[Falkenbach]

If it was your personal choice to come off the list, I'd say maybe learn from this, and consider doing it differently next time.

Sorry you have had such a rough time. Hope it works out okay in the end, whether you have a live donor or cadaver donor.

[kellyt]

I have to echo what everyone else has said because that was my first question - why would you remove yourself from the list?  Your transplant team sounds like they are very picky and cautious with their live donors.  That's not always a bad thing.  My clinic was VERY picky and I had my first 3 donors denied.  It as very frustrating, but I was no where near the top of the list.  I was just listed in Feb of 2008.  Had I been on the top of the list there would have been no way I would have allowed them to remove my name.

Good luck to you.  Your kidney is coming.  Hang in there.  I'm sure your friend as also saddened not to have been able to give you a kidney.  There's a reason.  That reason may not be revealed as soon as you would like, but there's always a reason.