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therberger
@therberger

Posts: 1
Joined: Apr 19, 2018

UPJ obstruction - horseshoe kidney / partial nephrectomy

Posted by @therberger, Thu, Apr 19 5:35pm

Hello! I was born with a horseshoe kidney. Diagnosed at 3 years with wilms tumor. Had partial nephrectomy (removed left side). In 2001 my kidney shut down, they did a procedure saying I had scar tissue build up. Everything was fine until 2016 when it shut down again. This time they thought I had stones and placed a ureteral stent. Pulled it 1 month later and was back in the ER with my kidney shutting down again within days. It's been determined that my ureter is coming over a mass from where my kidneys were joined and it's clamping itself off. Luckily I have an apt with Mayo in May to hopefully fix this. Anyone else have this issue?

REPLY

Hello @therberger,

My sincere apologies for the tardy response, but I'd like to extend a warm welcome to Connect. While I couldn't find members with the same condition, I'd like to introduce you to @contentandwell @IWantToBelieve and Mentor @rosemarya, who is a simultaneous kidney/liver transplant recipient; I'm confident they will have something to add to this discussion.
I’d also like to introduce you to a few others who can share their experiences about living with one kidney; please meet @foxylady @tntredhead @trishanna @charlie1947.

Here's some additional information about ureteral obstruction from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/ureteral-obstruction/symptoms-causes/syc-20354676

@therberger, it seems that pyeloplasty is an efficient procedure for treating UPJ obstruction in adults. Here is a recent journal article about the procedure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5485285/
May I ask if you've been seen at Mayo Clinic?

@therberger, I am not familiar with the condition that you describe. I do, however, live (very well) with my transplanted kidney. I needed a kidney transplant due to acute kidney failure, a complication of my liver failure. I transplanted at Mayo and I am continuously amazed at the level of care that the specialists provide. They monitor the condition of my kidney and they make sure that I understand what is going on.
I can assure you that you will be in good hands. And also, take your questions and they will take the time to give you explanations and answers .
I hope that you can learn a resolution to this condition.
Let me know if there is anything that I can assist with, Do you need travel information to Mayo? -We have a Visiting Mayo Discussion that can be helpful, We welcome questions. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/

Rosemary

I had intermittent hydronephrosis due to UPJ obstruction. My symptoms were debilitating flank pain with nausea and vomitting and bloody urine. It would only last a few hours mid day. They first thought I had passed a stone (which I don't have). Mine was caused by the renal artery and vein being on the wrong side of the ureter. The increased blood pressure from working on my feet crimped the ureter. I've had stents. I don't which was worse, intermittent flank pain, or the stent that prevented the flank pain but caused the sensation that I was urinating broken glass. I also had an incidental AML (angiomyolipoma) that was big enough I could have bled to death. So I had a partial nephrectomy for the tumor and then 6 months later (after the cause was identified) had the UPJ reconstruction by Dr. Chow in Rochester. Since the surgeries, I've developed intraabdominal scar tissue that tethers nerves causing pain in my low back/sacrum, hips, and upper legs. I also get intermittent pins and needles in my lower legs. I can't stand for any length of time or sit for too long before I'm extremely uncomfortable. I asked for Dr. Chow's input on this but haven't heard back yet. I've been getting treatment for three years now with therapy, etc., without success. Right now I've had two sessions of myofascial release. It's too soon to know if that will help, but I'm willing to try anything. Until I had the UPJ reconstruction, I was showing decreased kidney function on that side but that reversed. It took about 9 months from the time I first had symptoms until a cause was identified and corrected.

Also, my recommendation, call the clinic daily to check for cancellations so you can get in earlier. May is a long time to wait when your renal health is in jeopardy.

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