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I was diagnosed in 2003. I was having pain and leg problems and had an MRI. I was diagnosed with bi-lateral hydrophenosis. After many many more scans and tests, I was diagnosed with retroperitoneal fibrosis. The main concern of my urologist was my creatin level and blood pressure. I had stents in both ureters and at the same time, I developed shingles. After 3 weeks, I was put in the hospital with renal failure. My creatin was 8.9 and I was in a lot of pain. They removed my stents and put in new stents. I had stents put in four times. I was taking prednisone, but it did no good. By this time I am seeing a urologist, a nephrologist, rhumetologist, gynoclolist, a psychiatrist, and a heart doctor. It was finally decided I need to have my ureters moved and wrapped. My Doctor was not comfortable doing this and I was sent to another doctor at Vanderbilt Hospital in Nashville. He has seen rf in the past. I had this procedure done in March 2004. It was the best thing I ever did. I now battle fatigue and some discomfort, but nothing compared to before. I understand that I will always have rf. Every pain I have I associate it with this disease. Sometimes I can go days with a pain level of 2 or 3. But then there are days my pain is unbearable. But the fatigue!!!! It is always there. I am still working because my Board understands and works with me around my pain and fatigue. My insurance is through my job. My Board cannot continue doing this forever and I do understand. The final results (or so far) My left kidney is not functioning but my righ kidney is okay. It is so frustrating dealing with the unknown. My urologist and nephrologist are my main doctors and they are so compassionate and eager to learn more about this disease but there is nothing out there. We are all learning together. We really need research done on this disease. I hope that this is done in the near future.
[i:ef6d89e7e9]This message was automatically imported from the original Patient Experience[/i:ef6d89e7e9]
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