Turned Down By USC!!!: I am beyond... - Kidney Donation

Kidney Donation
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Turned Down By USC!!!

Crocheting-Cricket
Crocheting-Cricket
15 Replies

I am beyond frustrated and upset! Well, my case was being presented at USC yesterday before the Review Board and I’ve been sitting on pins and needles for 2 weeks. My Coordinator said she’d call me next week with the results. But INSTEAD, she called in the afternoon to tell me they are DECLINING me! NOT because we aren’t a good match, but because of my “anatomy”! Apparently, my kidneys have an artery and 2 veins attached to each one, which is NOT uncommon, but they don’t feel “comfortable” doing the transplant! I am beyond frustrated and upset! I’ve read so much on this in the last 2-1/2 years and my niece immediately found a journal article titled “Vascular Multiplicity Should Not Be Contra-Indication for Live Kidney Donation and Transplantation”. (See article at dx.plos.org/10.1371/journal... You’re telling me these surgeons who ONLY do live transplants, one of whom I spoke with when I was there last week who was RECRUITED from Cornell’s kidney transplant program (the largest in the country) to try and beef up the program at USC, would be "uncomfortable" clamping off two veins instead of one? I don’t believe it!

I called my brother right away, and we decided immediately that we would get a second opinion, ask for another review at USC, and go somewhere else (St. Joseph’s in Orange County) where we can get someone who WILL do this! Of all the stupid reasons for turning me down after putting us through all those tests and interviews and everything else! With the long lists of recipients waiting for kidneys, this is beyond nonsensical. My brother took it better than I did, and said immediately that even if we have to go to the NETHERLANDS (where the study was done on multi-vascular transplant - see article site above), we would! And we’d have a nice vacation to boot!

He called his best friend, a kidney doctor in San Diego (who first got me interested in doing this when I talked with him 10 years ago), and he will review the CT scans, we’ll get the films from USC and my brother will drive them over to St. Joseph’s, and I have a call into the kidney surgeon I spoke with last week.

I believe the review boards are overly cautious and they don’t ask ALL the surgeons whether anyone would be fine with this set-up. My brother’s case was reviewed last July and while everyone said he was good to go, a renal surgeon on the panel said “Let’s wait 6 months.” My brother appealed it, after his cardiologist said he was fine, and they turned their decision around! I’m HOPING that’s what will happen, but if not, we’ll go somewhere else.

Don't anyone give up if you're considering becoming a donor! This is beyond ridiculous!

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vegiedonor

So sorry to read what you have been going through but as you know there's plenty of "stupid" to go around especially if it isn't their problem. I think another place will probably do the surgery for you, as giving up is not an option. It's okay to private message me.

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Crocheting-Cricket

Thank you! I'll give it one more shot if the kidney surgeon I spoke with at USC returns my call. He seemed like a great, young surgeon who would try anything! Very competent. I doubt they even asked him if he would be willing to take this on. I have asked the American Kidney Association for a list of live donor kidney surgeons in the US who DO have experience in multi-vascular transplants so we can start looking again. This is the very last thing I would have thought about if they were to turn me down. Thanks for your good words! No, quitting is NOT an option.

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Abram1

I donated at Cornell nine years ago. I just reviewed the operative report and it stated that

"Two 5mm clips were placed on the renal vein side and two clips placed on the adrenal side before the vein was divided with a laparoscopic scissor. In a similar manner the gonadal vein was prepared, controlled and divided. A lumbar vein could be seen posterior to the gonadal

vein and was dissected free, clipped and divided. The renal artery was identified, dissected free of surrounding tissues. The renal vein was dissected free in a similar fashion toward the vena cava. "

I know in general that each vein which is clamped is a potential danger (although I believe that the improved clips have taken care of this problem).

I would continue to advocate but in a much calmer voice and see if you can change their mind or appeal their decision.

Good Luck and God Bless

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Crocheting-Cricket

Oh, thanks so much for this, Abram1! The kidney surgeon I spoke with at USC was recruited from Cornell! They wanted him to bring his expertise to the program out here! I have a call into him already, but this is even better! And that was 9 years ago??? I can't believe Dr. Kim wouldn't feel comfortable doing this. If they are really trying to improve their live kidney donor program, turning down multi-vascular donors will eliminate SO many kidneys! Thanks again!

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Abram1

Good luck. My surgeon was Joseph Delpizzo who is still at Cornell

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Crocheting-Cricket

I will mention this name to Dr. Kim! Many thanks again!

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DSKdonor
DSKdonorNKF Ambassador

DO NOT GIVE UP!! You have your records and you are determined -- I'd personally give it another 2 or 3 transplant centers to APPROVE you before agreeing that you are not able to do so. Power of Positive thinking does have its place at times, and I believe this is one of them! Best of luck to you.

PS -- Personally, my donated kidney had 2 arteries and 2 veins which were NOT known in advance as they were not visible in the CT Scan, but my surgery still went forth. I know of others in the same situation as well, which is why I can say to keep trying (it wasn't just a hopeful message).

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Crocheting-Cricket

Thank you so much for this! I will NOT give up until someone tells me it's just an impossible situation. In the meantime, my brother waits.... I'm hoping to appeal the decision of the Review Board at USC before we move onto other transplant centers. Thanks for the encouragement!

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laurenduvall

I have also been frustrated by how cautious they are. I spent Monday at the hospital having a biopsy "just to be sure." They say they are being ultra careful because I am an altruistic donor, I dont really see why that deserves a different level of certainty. Im telling myself that it's a good thing they are being cautious. But it's frustrating. Maybe they just don't understand altruism? Or maybe there is something they're worried about and they aren't telling me. Could there be another reason they denied u and they are using this as an excuse?

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Crocheting-Cricket

That is an interesting thought you have! A kidney surgeon at another hospital said that oftentimes the Review Board will turn a donor down to give them an "out" - even though you've told them that you are 100% committed to doing this!! I have made 3 calls to the USC kidney surgeon (no call back yet), and am now sending the CT/Angio scans to another surgeon at another kidney transplant center to see what he thinks about the "anatomy". This is beyond ridiculous. I think you're right - they really don't understand altruism!

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Crocheting-Cricket

We are now trying UCLA and St. Joseph's in Orange County. The kidney surgeon at USC was very nice and DID call me back and explained that it was a much more involved surgery because of the multiple arteries and veins and they just didn't have the experience to do it, but he was sure UCLA would. So things start again and hopefully will move forward. I'm not giving up! My brother has waited long enough!

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vegiedonor

Spoken as a true super hero. Keep us posted.

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Crocheting-Cricket

Thank you! Will do!

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DSKdonor
DSKdonorNKF Ambassador

So basically you've received the information you needed to forge on -- one particular transplant center doesn't have the expertise for your surgery. That's actually great news for 2 reasons - you are OTHERWISE a perfect donor, and they told you that THEY weren't equipped which is good on their part - you wouldn't have wanted them to perform this surgery on you if they're not comfortable!! You just have to find the right fit and again, that's the great news! There IS a doctor out there that WILL perform your surgery and if you have to come to the east coast to do so, just let me know and I'll hook you up with the 2 top teams in Northern NJ (and then there are quite a few in New York City too)! -debi

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Crocheting-Cricket

Well, thank you for the supportive words, Debi! And if we flunk out in California, we will definitely be coming east!

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