Ureteral stricture after transplant with no success after attempting stent and ballooning

[Calebzztop]

Hello I just had my third kidney transplant in December. I had multiple pre transplant day long meetings to decide the best option for me having a third transplant and it was decided my fiance would donate and we would do paired exchange as a live donor and planned transplant would be for the best outcome. My fiance went through many tests and received his congratulations letter saying he was approved to donate kidney.

On December 7th I received a phone call saying that they had a cadaver kidney for me. I told the woman that this must be a mistake as I had a donor and we had a very specific plan that the entire transplant team came up with for paired exchange and that I wanted to speak with one of MY doctors. She called back saying THE Dr there said he thought I should take the kidney because I had high antibodies and was hard to match. This was already well known to myself and my team so I again tried to explain that I had just seen my transplant Dr two days ago and the plan was for paired exchange but again I was told I should accept the kidney. Honestly I was in shock and said ok even though everything in me was screaming this isn't right.....Anyway, I received the kidney early in the morning and I have had constant complications since. Tubular injury, narrow ureter which they are saying is a ureteral stricture and moderate vascular issues with donor kidney. I now have a nephrostomy tube and I have had for months. They have tried stent first which did not work,then tried ballooning which worked temporarily for a month before the ureter narrowed again causing hydrophrenosis....It seems that they have run out of options as transplant team sent me to urologist who stated to me that they had already done everything she would have done but that they asked her to try again to stent but from the opposite end ,which she said she felt had very little chance of working but that she was going to try for me and the team........I asked my transplant Dr what would be the next step if this next attempt didn't work and he said that it would be a possible surgery which is very complicated and might not be a viable option for me or having nephrostomy tube and exchanges of every 6-8 weeks for life of this kidney...problem is my nephrostomy tube gets clogged every 3-4 weeks and then my ureter narrows back at 4 weeks so I wouldn't make the 6-8 weeks for the life of the kidney without getting hydrophrenosis again and of course there's infection risk,bleeding risk,urine leak risk etc.....Was wondering if anyone else has had a similar problem and if anyone knows of any other solutions. I have read of ureteral side by side retransplantation....using a native kidney ureter or cutting the narrowed part of ureter and reattaching. I've been really stressed and worried because I don't have dialysis access and my third transplant has been done...theres no going back in time....the difference between a second and third is pretty similar as far as success rate and longevity of graft but there is a much bigger difference between the third and fourth. Im scared and struggling with the fact I didn't stick to saying no to this kidney when I knew that it was not the plan at all and I can never get that third chance back. I know I need to let that go and deal with the situation now but I've never received a single answer from my team when I've asked why was I called in for cadaver kidney instead of going with the plan of live donor paired exchange which they all agreed was the best for me....I've literally asked everyone and they all will not answer and just change the subject. I feel an answer would help me move forward and be able to deal with this current situation and problems better.

I would appreciate soo much any advice or information on ureteral stricture and solutions. I know sometimes some hospitals are aware of something new that others are not yet.

Take care and thanks for taking the time to read my post!

[LisaSnow]

I am sorry about the struggles you have with post op complications. It sounds though the ureteral and vascular issues are due to transplant surgery's access to "a transplant" and not with "whose kidney". This may be a common adverse outcome for anyone with multiple transplants, because the connecting spaces are limited and have been used up. Please try not to ruminate over the "what ifs" as you need all the physical and mental energy to help you heal. I know it is stressful so please take care of yourself.

[kidneyrecipient in reply to LisaSnow]

Lisa, I'm so sorry you've had to go through so much. I pray there will be a good solution to the problems.

[LisaSnow in reply to kidneyrecipient]

I personally didn't experience these problems but all transplant patients are at risk of various complications during the journey. Keep our chin up and keep going with gratitude, is the best way to beat the odds!

[Gotthecall_123]

🙏💚my thoughts and prayers go out to you.all I can say is don’t give up keep trying to get the answers you are looking for 🙏💚all the best.

[Darlenia]

We've been through a similar situation with my hubby's transplant. At age 71, he received a deceased donor transplant with conditions almost a year ago (June 28). All sorts of of complications developed ranging from a-fib, to a ureter leak with urine pouring through his incision, to a drop foot (not all that unusual with transplants) which caused him to fall and ended with brain surgery. Today, he's doing well! The a-fib is gone, the drop foot is gone, the urine leak is gone, and the hematoma is too. He has returned to normal, other than now dealing with prostate issues which, hopefully, will also be corrected soon!

While we can't speak directly to your specific situation, it's important to look forward and not rue the past too much. I know...it's really hard to do that in the middle of issues. With the urine leak, my husband had two drains in place - one was a JP drain and the other was presumably a nephrostomy drain inside the new kidney. It took perhaps two months to fix the situation - which involved interventional radiology placing and later removing a stent in the area of the leak. In your case, stenting doesn't seem to be keeping your ureter open sufficiently. So I would simply wait for "next steps" from your nephrology team. It's easy to look on the dark side - but your nephrology doctors are truly super specialists. Initially, we were certain the leak wasn't being corrected as my hubby's surgery wound kept flowing and flowing with urine and whatever else. (How the leak developed is a mystery - perhaps it occurred during removal from the donor, perhaps during placement inside my hubby, etc.) We continued on with mopping up the bathroom floor, changing pads on the incision and on the bed, etc. We also questioned the team's knowledge and doubted their skills. We truly expected that once the drains were removed, he would retain all the drainage internally since my hubby was always draining. However, everything settled down right after removal. (We were assured that the cardiac and lymph systems would take care of any residual fluids.) Anyway, an interesting fact we were told at the time of the transplant was that the surgeon who removed the donor kidney left a good amount of vessels and such attached to the new kidney, so there was a "extra" to work with. I wonder if this could be the case with your donor's ureter. It's a process. See what they say. We simply moved along because not doing anything wasn't a choice. We clung to the fact that successful transplants are exceptionally important to transplant centers. Outcomes are closely tracked by UNOS - centers can be closed down if results are poor, etc. But we are now acutely aware that, although complications are low, complications do happen. My hubby (and you) are real faces in those statistics. Whether the complications came with a deceased or living donor kidney, no one can turn back the hands of time. My hubby wondered about his decision making too - thinking he should have stayed on dialysis and so on. These situations shake your soul, makes you question everything. But, think positive and look at the bright side. Chances are high that the situation will turn around soon for you as it did for us. Sending you a virtual hug and encouragement. Please let us know how it all turns out!

[DeeDee549]

Hello Calebzztop, I received a kidney from my friend and had a ureter stricture. They tried stents with no success. It was finally disgnosed as BK Virus. This virus is something you get as a child then it lays dormant until they suppress your immune system. I had Leflunamide IV treatments and a second surgery to attach my native ureter to my transplant. Then I was monitored very closely as they reduced my tacrolimus to allow the BK to resolve. I am now 16 yrs post teansplant and the BK virus is still negative. I have had complications and my creatinine is typically between 1.6 and 2....I am very fortunate the kidney survived and is still plugging along after all these years. Have you been tested for BK virus? If not, I would ask to be tested asap. Let me know if you have any other questions....GOOD LUCK!

[Calebzztop in reply to DeeDee549]

Thank you so much ! I do have Bk virus now from donor kidney and it was just detectable and then my levels got really high. Have tried everything so now I will also have surgery but I have no native kidney s only last transplant kidney (my 2nd) so they will cut out stricture and use small intestines in place to reattach to kidney and then I will have prograf lowered as I am put on monthly or bi weekly infusions. May I ask did you get hydrophrenosis alot while trying to stent etc before surgery? I constantly get and my kidney gets worse and worse with each new hydrophrenosis episode. And how long from knowing that stents etc were not going to work and surgery was needed did you receive surgery?So afraid of getting permanent scar tissue and damage to kidney, they clamp my pcnu when I absolutely need it open so I can get rid of urine and not get hydro ..they leave in too long and the tubing gets clogged causing rise in creatinine and lowering egfr from hydrophrenosis.. I was so grateful for your reply because no one told me it had anything to do with BK and I looked it up after reading your post and saw it absolutely did and asked my Drs who all said no no I don't think so and quickly changed subject.🤦‍♀️

So again, thank you and I pray your transplant lasts another 20 years or more! God bless ,keep up the hard work , I wish you peace happiness and good health. Best,