Ureteral stricture surgery/Ureteral retransplantation, replacement of ureter w small intestines etc and specialists who do this

[Calebzztop]

I have a third kidney transplant and a ureteral stricture. We have tried everything to fix the stricture but nothing has worked. So my transplant team decided that surgery was the option ,surgical retransplantation of the ureter using a piece of my small intestines where the stricture was ,in its place. The whole team decided but at the very last minute, the surgeon who was to do the surgery refused to do so and he eventually gave the reason as "where the transplant was placed..anatomically..it makes it riskier to possibly hit kidney, or hit bowel or to (obviously a risk) ruin the ureter completely....and my urologist did not seem happy with this decision as she was left with putting in stents every 3 mnths and she said it was risky itself in that for life every 3 months I'd need surgery, risk of constant infection with the stent in,risk of bleeding, risk of stent moving ,crustation,etc etc..and I have had infections every 6 weeks and had 2 stent exchanges..4 stents placed and a exchange coming in 5 weeks but I developed hydrophrenosis and my creatinine went from 1.4 to 3.3 and gfr from 47 to 17 in 9 days ,so I just had a nephrostomy tube placed today to relieve hydrophrenosis and praying so hard to help my numbers come back to normal...problem is there will continue to be problems with the stents and also with nephrostomy tubes...I need surgery. DOES ANYONE KNOW OF A HOSPITAL OR SURGEON WHO SPECIALIZES IN RETRANSPLANTATION OF THE URETER OF TRANSPLANT KIDNEY ? WE ARE LOOKING FOR SOMEONE WHO CAN DO THIS SURGERY.WE WOULD LIKE TO SEND MEDICAL RECORDS TO AND HAVE APPT WITH ANY DRS WHO HAVE ALOT OF EXPERIENCE WITH THIS AND ARE AT A HIGHLY RESPECTED HOSPITAL. THANK YOU ALL VERY MUCH FOR YOUR TIME .GOD BLESS YOU ALL!🙂

[Alfredmynewkidney]

Not sure where you are located. My Dad does have the stents replaced but they are new and only replaced every year. We are near Tampa. And go to Tampa General. You could reach out to their transplant team. Or Dr Bukkapatnam. He is the Dr my father sees.

[Calebzztop in reply to Alfredmynewkidney]

Thank you so much for your response and recommendation! I hope your father's doing well and the stents continue to be successful for him! I will definitely be getting in touch with Dr. Bukkapatnam:)Take care

[MIKidney]

I cannot help sorry.

[Transplant2018]

I'm sorry you are going through all this. I don't know of anyone but I would suggest trying a large transplant center, like Mayo, as such centers are more likely to have specialized surgeons.

[Calebzztop in reply to Transplant2018]

Thank you very much for your kind words and response. I am still in the hospital and it's definite that I need to retrieve all of my records and start sending out. Mayo is definitely one we have decided we would be asking for their opinion and if they could possibly do the ureteral retransplantation surgery. I so appreciate your time in responding to my post and I hope you are feeling strong and remain healthy and well.Take care!

[Oceansideup]

I am so sorry to hear of your situation and the difficulty you are having finding a facility/surgeon to resolve it. I do not know what strategies you and your team are using to find what you need. I am wondering if you have done online research into the latest surgical techniques for the type of surgery you need. If you can find recent published articles in medical journals, you may be able to reach out to the authors or institutions that submitted the paper and see where that goes. Pubmed is one such resource. You may not be able to access all of the articles you want but your doctors certainly can. They/you may be already searching this way and if so, sorry I have no new idea to offer. It’s just the first thing I thought of. Hope you get the help you need soon.

[Calebzztop in reply to Oceansideup]

Thank you so very much for taking the time to read my post and for your much needed advice. I am going to tell my fiance of Pubmed as he has started looking through articles and reading of cases and results of trials. I am still in the hospital. I was discharged yesterday and this morning at 5a.m I woke with a 103.8 fever and was obviously admitted immediately again....but as I said before, these things will keep happening and that is why I must find a surgeon who CAN do the surgery. I wish you the very best and again, greatest appreciation! Take care!Lisa

[Oceansideup in reply to Calebzztop]

Oh my goodness! Sorry you are not doing well but relieved you got admitted so you could be stabilized. Do keep us posted on how you are getting on. I hope you find a surgeon soon!