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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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.
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.
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.
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!
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).
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!
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?
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!
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!
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
Perhaps all is done by now but I have to add my 2 cents. I donated a kidney to a dear friend 8 years ago. The agony of waiting, for both families, felt like it dragged on forever. As other donors have said, it was the most thorough physical of my life and I'm glad to know how healthy I am! But donating an organ is nothing to be taken lightly by either the donor or recipient. Our surgery was almost canceled on the 'morning of' because of a problem on her end. Shocker! And so disappointing. But it was quickly correctable and the surgery went as scheduled. My recovery was slower than most and not without difficulty, but I'm fine now. My friend, on the other hand, despite all the pre-testing and matching, had one fairly good year, and then 2 years in and out of the hospital before she eventually died. So of course, I understand your anxiety and wanting to "make your brother better right now" - but it's also important to understand that it isn't always a perfect world, and the outcome of a donation isn't always what we want. I appreciate that you're following up with other transplant centers that have had more experience in your particular kidney anatomy. They're not 'better' centers, but perhaps have simply had more experience with this particular challenge. And that's what you want: to provide the BEST opportunity for your brother. Rather than being angry at USC, please appreciate that they don't feel up to the challenge. It's far better to accept that and pursue other avenues than to get tied up in anger and frustration. After all, if/when your brother receives his transplant, it will hopefully be for life, and you want to give him the absolute best opportunity for a healthy life that you can.
I'll get off my soap box now. I'm a dedicated donor and always happy to talk to others who are considering donation, but we all need to be completely realistic about this major, life-changing act, for the recipient, the donor, and also for all the doctors, nurses and ancillary staff who make this possible.
My best and most healthy wishes to your brother. I definitely know how desperately we all want to help those with kidney failure.
Thanks so much for this, Cathy! I really appreciate your "two cents". My frustration with USC was mostly that no one ever mentioned that wouldn't be willing to do a vascular multiplicity case (even though we are a perfect match) until the very end. They just didn't have surgeons proficient enough in that area. That would have been nice to know from the beginning! However, UCLA DOES have that experience and I understand it's the largest kidney transplant center in the country (I didn't know this) and they are using my records from USC to move things along. My brother will have to re-do some tests since they are now a year old. The longer we wait, the more that has to be repeated, the older my kidney gets, and the more times he has to go to dialysis. In everything I've read preparing for this (and I've read a LOT!), no one said "This is a very long process, so have extreme patience." You and I are now saying that. There is NOTHING that will change my mind about being a donor but the sooner my brother can get off dialysis, the happier we'll all be. Thanks again!
I certainly understand wanting to get your brother off dialysis. I admire people who maintain on dialysis week after week. And yes, the waiting is unbearable for those most closely affected. I kept trying to put it in the perspective that they wanted the best result for both of us. It sounds like you're on the right track, and I hope all goes well (and feels like it's a little faster now that so much of your testing has been done) for you and your brother.
Isn't this a great site?! It didn't exist when I was going thru my testing and questioning, questioning, questioning!!!
Yes, this is a GREAT site! Allows people to learn so much, ask questions, and vent! Plus all the success stories. I'm so glad I stumbled on this. And thanks again for your good words!
I went through the entire process at one transplant center. I was approved, but they decided that my mom (recipient) needed to lose 25 lbs before they would do the surgery. She lost 50 lbs before she was put on the transplant list to even begin my journey as her donor. She had gotten very sick, and losing additional weight was going to be very hard on her. Just a note, if the kidney was from a deceased donor, she met the BMI requirement, but not the BMI for a living donor. We had been going through the process for about 2 months. I was none too happy. She started trying to lose weight, but I don't like to wait. My mom was resigned to the fact that she would just have to wait longer. I think when a person has been dealing with kidney failure and dialysis for so long, they are just tired of pushing. Sometimes, we donors have to step in and push for our loved ones! I started looking for other transplant centers, and the first one I called had a much higher BMI limit. She was well within the limits for the surgery, but we would have to go through the process. The entire process at the second transplant clinic only took about 1 month. We could have been done faster had the first transplant center not taken their time sending over records. Because I had recently taken all the tests, 24 hour urine, CT, EKG... the original tests did not have to be reperformed. The blood work, antigen matching, and psychological exams were done by both transplant centers, but that was nothing compared to all the tests we did initially. We completed the transplant on January 2! (At that time, my mom had only lost 15 lbs toward the 25 pounds.) Don't give up, and there is absolutely nothing wrong with working with multiple centers at once. I believe in a back up plan, and time is of the essence in this situation. Good luck!
Oh, thank you for your story! Yes, we DO need to push! This long process is really ridiculous, even if they ARE trying to make ultra-sure that both parties are healthy. But I believe UCLA will accept all my test results from the previous center and I will probably only have to do the few things you mentioned, and as soon as my brother clears whatever tests he needs to repeat, we should move forward. Hope you and your mom are BOTH doing well!
We are both recovering well. I spoke to my surgical team last night, and they do handle multiple arteries. If you have issues with UCLA, you could potentially come here. I have never met such wonderful surgeons. Through the process, I feel like they are now my friends...my family. I am from Mississippi, and the University of Mississippi Medical Center is where I had my surgery. Good luck!
UCLA now has all our records. My brother will see his "team" this Thursday and find out what else needs to be done. Once he's cleared, I can go down for just a few tests, and then we should (hopefully) be on our way. The communication between support staff and us has been remarkably better with UCLA! Thanks for asking!
Yes! We were finally able to have the surgery on June 30th! We are both doing incredibly well. My brother is like a whole new person! The change is incredible. After 4 weeks, I felt like I had never even HAD surgery! I was totally back to my old self! After waiting so long, we were so excited to finally get it done. Even though they wanted to wait a few more months due to Covid-19, we made a case for doing it right away and convinced them otherwise.
UCLA. We should have started with them in the first place, but who knew! My biggest advice to EVERYONE considering donating a kidney is to ask the team whether they are willing to do a multi-vascular transplant in case your kidney has more than one artery and one vein. There are some hospitals that can't do this and you won't know until all the tests are over and they do an MRI as the last test. No one told me this and we could have saved a lot of time.
Very interesting.... I was told upon my donation that often multi veins might not even show up on any test - they find out while you're in surgery! SO, very important point you've made for others! I'm just so glad you were persistent! Way to go!
No, they won't be seen until the very last test - the MRI to see where the placement is. Maybe some hospitals don't do the MRI at the end of testing? But always good to know ahead of time, especially if that hospital isn't willing to do the transplant. I learned the hard way.
absolutely agree! I guess I only needed a CT scan for placement (and to make sure I had 2 kidneys - some people only do have 1 at birth!)... and because my hospital didn't care how many veins or arteries, an MRI wasn't necessary for me.
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Good luck!
