Retroperitoneal Fibrosis~ Diagnosis

Some of you may know that in July I went into life threatening Kidney Failure. I really didn’t have any unusual symptoms except for swollen feet. It’s a good thing something inside of me said “go to the ER”. I was close to death.

The Doctors put stents in to keep my ureters open so that urine wouldn’t build up in my kidneys. They knew the problem was with my ureters but they didn’t know what or why. I had several biopsies that showed irregularities but no reason for Kidney Failure. At the time the Doctors were concentrating on my bladder and not really on my kidneys.

They didn’t find out until December that my kidneys had been damaged beyond repair. The right on was only functioning at 19% and the left was working too hard to make up the difference.

I went to several specialists with no answers. They all agreed there was an obstruction that had to be taken care of they just didn’t know where or how. One Doctor wanted to put tubes in my back going to my kidneys. I was scared. When the Doctors tried to take out the stents I would start to go into kidney failure within 24 hours.

The last Doctor I went to is a Nephrologist. He didn’t seem to take my condition seriously because he works with dialysis patients daily. He did come up with Retroperitoneal Fibrosis.

This is an autoimmune disorder where abnormal fiber like tissue occurs behind the membrane that lines the cavity of the abdomen. The growth spreads to affect the ureters or a mass forms and presses on the ureters causing a blockage.

The symptoms for this are:

  • pain in the lower back
  • pain in the abdomen
  • weight loss
  • fevers
  • anemia
  • loss of appetite
  • constipation

Sounds like the side effects of most of my Bipolar meds. Topamax is known to cause kidney stones and may contribute to the Fibrosis. I’ve been on it at a high dose for years. No one said anything. They still didn’t say anything after I went into kidney failure. No one questioned my medications.

It’s difficult to get a biopsy for Retroperitoneal Fibrosis. Most masses are Benign but can become malignant. There really isn’t much of a cure for me at this point. I probably will have to have stents for the rest of my life. There were questionable findings in my biopsies but I guess not enough to consider cancer even though everything I read says you should undergo extensive cancer screening including an entire body PET scan.

The Nephrologist never called to tell me any of this. He just wrote up his notes and I read them in my file. I called twice to get answers and was never called back.

All of this has been frustrating. No one really wants to help because it’s rare and complicated. I’m tired of all the tests. I decided to take a break from Doctors for a month or two. I need to reconsider what I want to do and if I should consult different people in the medical field. I feel like crap but at least I have something that makes sense.

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