Has anyone been denied a second or third transplant, if so,why?

[Calebzztop]

Anyone been denied another transplant who is healthy and compliant? I have had 2 transplants..my second is at 18 years and being evaluated for a third..I had the green light..then 2 weeks later they asked for an appt with a Dr and said if that went well they'd go forward...after that appt went perfectly and the Dr gave the green light saying no reason to deny another transplant..I was asked to see another...that Dr gave the green light...a week later no approval and asked to come in AGAIN for a second meeting with the whole evaluation team..when I asked why? I was told one member of the team had concerns..but not why..I have ALWAYS been compliant,never missed appts ,taken my meds,am in good health besides the kidney...don't drink or do drugs,no mental health issues..I'vealways done everything I've needed to..my transplant wouldn't have lasted 18 years + if Ihadn't..I never even thought there would be an issue..and I have 2 healthy donors..they've been tested to see if they are healthy enough to donate but not for match..but the Evaluation Dr said they could participate in the SWAP program and that I would definitely get a kidney...I do not have access for dialysis long term..fistula in arm never worked..ended up using the femoral artery and saphenous vein for fistula for 8 years of dialysis in between the two transplants...I had a lot of antibodies thats why so long on dialysis..but plasmapherisis was done and I was able to have transplant....my fiance/hubby read a young kid was denied because he was autistic..his parents brought it to the NEWS etc and now he is getting a transplant..and another young man who was denied because he was arrested, considered bad past behavior..nothing like drugs,more about teenage angst probably...but now I am a nervous wreck, I live a healthy lifestyle, am 47..2 kids 2 grandchildren 2 dogs who all need me...just bought my first house last year and am not ready to leave this earth yet...My transplant Dr I've had for YEARS never ever said maybe if you're approved..it was well,I know you don't want to hear this news but its time for another transplant. Don't worry, the evaluation team will contact you tomorrow and we'll get you a new one....If anyone has anything to share regarding anything involving transplant evaluation for second or third transplant and denial please do!! I don't know what to think...I've actually got my numbers better with exercise and diet..i can't believe I'm thinking will I have to go to another hospital or even country to survive and get another transplant?!! When there's NO reason to be denied at my current.

[Sparkles614]

Hi Calebzztop. I feel your angst and get it 100%. I too am in need of a third transplant. I am 57 and I've had this kidney 11.5 years and my first for 10 years. My GFR for my current kidney is 20, so I'm not yet on dialysis. I don't have a long-term access either. I've had my evaluation for the third transplant and I was told to come back in 6 months to have another discussion. I haven't had any of the testing done yet. There are a couple of extenuating circumstances that require me getting stronger so I am a good candidate for surgery. I actually agree with the doctors to an extent, but it is a hard pill to swallow. The one thing both the nephrologist and surgeon kept telling me is I am high risk because it's my third transplant. At my hospital, they do not remove any of my native or transplanted kidneys unless there isn't a way to make a new kidney fit. I guess all we can do is do everything the evaluation team wants. Ultimately, they want what is best for us. I understand the frustration and not knowing what our future holds. I am so happy that you have 2 potential donors. You are blessed. I don't have that so I am looking at years of dialysis - again. It's so disheartening to have gone through 2 transplants and now looking at needing a third. I will keep you in my thoughts and please keep us updated on how things progress for you.

[Calebzztop in reply to Sparkles614]

Hello Sparkles614! Thank you so much for your reply. Im sorry you are also going through this..as far as donors,do you have anyone who can be "your champion" and advocate and tell people that you are in need of another transplant? Like on social media, tv news,newspapers local and not,billboards etc etc....I think my two potential donors, my son and my fiance almost hubby will end up being just my son because of my finances BMI and sleep apnea. I have told him myself that I would like him to eat healthier and lose 15-25 lbs or I, personally, would not feel safe taking his kidney, even if the team agrees....now as far as not removing the native kidneys, I had never heard of that. I had both natives removed at different times because I was told they were actually causing me harm and keeping them was not an option. Which was fine with me as they were each no longer working at all when taken. I did not urinate once 8++ years on dialysis. ..my issue and severe frustration with this evaluation team is there was NEVER a mention of anything that would stop another transplant during the whole entire DAY long meeting with every single member of the team,everyone was positive that with healthy donors I would receive my transplant, if no donors I'd be immediately listed. I am strong and healthy in every way besides the kidney and even then I do more than alot of people I know who have full renal function....and then it was one thing,see this Dr and if good,we'll list..then after that was good, it was another, then after that,another and another, now come back in..I read up and its really about their numbers and bringing them down. I know their are good Drs,of course there are! But even good compassionate Drs cannot do/transplant someone who is a good candidate with a survival rate of 3++ years because there center/hospital won't allow it because they fear their numbers going down. And im not saying MY survival rate is 3+ years..I was told they believed this "possible newkidney" could last as long as my second or longer! I agree that of course we must do everything the transplant evaluation team asks..and I do..I plan to speak with my transplant Dr now and ask him his thoughts. I was NEVER told I was high risk or even that there was a possibility of denial. Not from him or the evaluation team until a couple days ago and again, no reason, just come back in..after the reasons they did give as being a possible concern,every one of their own professionals/specialists said was ABSOLUTELY NO CONCERN AT ALL AND I AM A GOOD CANDIDATE FOR ANOTHER...if it is their numbers, which im sure it is..a Dr who worked there for 35 years told me,its ALL about their numbers and being in the top best transplant centers,having the longest survival rates etc..and this was WHEN he was working there as THE transplant psychiatrist. He was a very good compassionate and honest man. Is. He retired 5 years ago and im thinking of giving him a call as I have his personal cell number. I've known him since adolescence and before my first transplant at 19. .. I did read many articles where one hospital refuses so people go to another and get their ok to list and be transplanted there..so that could be something you can look into as well! I certainly am. You must be your biggest advocate and let them know your life is precious and you will never give up. Again, I am so sorry you are also going through this and that you do not have potential donors but please reach out in anyway possible to ask and let people know that you are in need of a kidney donor. You'd be surprised how many people are willing to donate to someone they've never met and how many people who are willing to help in other ways if they cannot donate. Spreading the word,setting up fundraisers etc etc. ..I will keep you in my daily prayers .You are precious, your life is precious and you should be given every chance to live your life to the fullest with the best quality of life possible. If I find any new information I will be sure to share it with you also. God bless, continue to stay strong! ..I did find just a little change of diet and daily light exercise did improve my numbers,I hope the same will happen for you. And again, THANK YOU FOR SHARING YOUR STORY WITH ME. WE NEVER WANT TO HEAR SOMEONE ELSE IS STRUGGLING BUT WE KNOW WE ARE NOT ALONE IN THIS. 🙏🙏

[Hidden]

There is a reason. Find out what it is and determine what it is before you make a move. Just curious, but do you have commercial health insurance.

[Calebzztop in reply to Hidden]

Hello Kidney1982, I have state insurance. I have not been told "you have been denied " just go to this Dr and if thats fine we will list and get going with your donors,they have swap program so even if they are not a match they said I could swap with someone who they do match..and then after that Dr said no concerns everything is fine,it was just one more Dr and we'll go ahead..then just one more ...now, they had their weekly discussions on possible transplants and their answer was We need her to come in...no reason this time for POSSIBLE concern,just Come in..the coordinator said she did not know, she was just relaying the information... again, I have had this kidney 18 years + and still functioning and NEVER any issues with non compliance etc..I haven't even been in hospital or ER in atleast 8 years!! I have two children who have had a entire lifetime of watching their single mom go through transplant, 8 years of dialysis and then, thank God, another living donor transplant and now I have 2 grandkids and they ALL need me..I am the center of the family, the one who keeps everyone together, provides a home for my son and granddaughter, has all of the Holidays here ,am the only parent they have..or family really ,besides each other and their children and of course my daughters husband...and I have 2 fur babies..1 is 11 with health issues and has been with me as my service baby since 8 weeks...I know we ALL have loved ones here and family of course! And we all deserve to be given the best medical care that is available. I was just sharing my own personal feelings and reasons for why I am far from ready to leave this earth . ..My transplant Dr told me that it was time for another transplant and that dialysis was not an option because of access AND the chances for a successful kidney transplant was better with no dialysis prior to transplant...(I did have dialysis after my first ,for 8+ years and then received second which is at 18 years +) So,anyways, yes,there is a reason. I believe its their numbers or maybe my insurance but my state has the best insurance and they cover everything...I will just continue to take the best care of myself, research,go in for another evaluation meeting with the evaluation team and my whole family and close friends and see...and if,if no,I will look at other hospitals...I could never afford on my own, but my soon to be in laws could. So I guess I just have to wait and see and pray for the best...When you said, there is a reason, find out what it is before you make your move..what do you think the possible reason is? Third kidney? Higher risk? Medical insurance? And what did you mean, make your move? Just asking what are your thoughts and what would be "your move" THANK YOU SO MUCH for your reply and Good luck to you,God bless and take care!! Sorry if I was rambling a bit again or repeating..I just woke up and am running out the door to go to a Amusement park with my daughter and grandchildren!!😁👩‍👧‍👦👩

[Hidden]

I don't know enough about your case to figure it out. If that last decision maker is the hospital administrator it might be insurance issues because they get paid more/quicker with commercial insurance than state insurance. The hospital is a business. I doubt it is anything you did. I am surprised everything is so strick now. When I was going through it, I could just drag in a match from anywhere and start the process. I have several non-compliant tags on record, so getting another transplant would be obviously impossible. See if you can find out anything about this person of whom is holding things up then go from there. If it is a money thing, go to your local news. Maybe an attorney would help after your story is out there. Don't let these people play with your life.

[Calebzztop in reply to Hidden]

Hello Kidney1982:)Hello Sparkles614 I went in for the third transplant evaluation and they ARE going forward with it!! There was NEVER an if!! During my first Zoom virtual evaluation no one on the team ever said IF..or maybe...it was the one coordinator who called me and said that it was not approved at this time and that there were reasons..and wouldn't say what they were...which was SO bizarre and scary because every single Dr talked about the transplant as if it was a definite as far as testing donors and listing and if the donors weren't matches they could give to someone else they matched in need of a kidney and I'd get one in return.......so the only concern is the fact its a third and there could be scar tissue that would be too much ,making it not possible to get a live donor..and the surgeon would not know 100% until he had me open on the operating table. Also,I guess I have a large uterus 🤔...so he was a little concerned about room..but I only have the one transplant kidney..the other transplant and both natives were removed...so if there is too much scar tissue id need to get a cadaver kidney where they could take everything with all of the arteries etc...they also said that they do not want me to have any dialysis before and of course that ill need to come in frequently in the first year, once or even twice a week and I may have rejection episodes and hospitalizations more than with the first or second and that we really want this third to last 20-30 years if possible! Because after that,it'd be a fourth! ...We are going to watch my egfr and when it gets to 15 or below we will test my two donors and go from there..they said they think the transplant will happen/be needed in 9-12 months. I have been on a plant based diet and exercising..egfr went from 13 to 15 to 19!! ...I feel so relieved atleast to know that they are going to try to transplant me with a live donor ...just worried about the scar tissue...since I don't have dialysis access for hemo and they said possibly not for pd either because of scar tissue etc...but im going to stay positive ,try to prolong the life of this transplant and pray for the best! I hope and pray for the best for both of you as well and would love to know how things are going now for you both . Please keep me updated❤🙏 You are right,We are not alone in this.Many Blessings,

[LisaSnow in reply to Calebzztop]

Congratulations! You must be so relieved!

[Calebzztop in reply to LisaSnow]

Thank you!! I am unbelievably relieved! Now just praying no scar tissue...but one step at a time! 😊Take care, God bless and thank you so much again for taking the time to congratulate..it means alot to me. ❤

[Calebzztop]

Thank you Kidney1982! I agree,the hospital is a business and it was MUCH easier with my first two. Get a match and then you get your date for transplant! Im so sorry to hear about the several non compliant tags and that it is impossible to get another!! People change,circumstances change! Many things can factor into why someone may be non compliant ,but if not anytime recent..if its been years of being compliant, I believe EVERYONE deserves a second chance at LIFE. So much playing God, it breaks my heart and angers me to hear that. I understand there are wait lists and they want to make sure a kidney/organ is not"wasted" but people should be given an opportunity to show change and that they have learned from their past mistakes..some of the reasons for denial I have been reading are truly mind blowing!! ..I have thought many times, if only Doctors could have to experience SOME of what we go through, maybe they would be more understanding and compassionate... . I do not know what possibly could be a reason for not approving me besides their fear of bringing their long term success rate down or just that they feel my numbers are not bad enough yet to transplant..but then why say you need another andwe want to start right away because we don't want you to get to dialysis levels and not be ready..and I have had this second 18 years and thirds are now known to last as long as seconds..I will have to look into the insurance thing..and just see what they say at the meeting..but I will be armed with plenty of research, proof of compliance and my entire family there as back up..and I WILL go to the NEWS if not approved and look into other hospitals..which feels CRAZY because I've had both there and everything has gone well !?!.....Thank you again! There is no where else I can go where people can understand this situation,have gone through it,or are going through it and can give advice and it is so very much appreciated beyond words!