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Retroperitoneal Fibrosis I was diagnosed in 2003. I was having pain and leg prob...

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Guest
Guest

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]

0 likes, 5 replies

5 Replies

  • Guest
    Guest

    Posted

    WHO WAS THE SURGEON AT VANDERBILT? I HAVE A FRIEND WITH THIS TERRIBLE DISEASE...THEY ARE HAVING DIFFICULTY LOCATING A DR. THAT IS WILLING TO DO SURGERY.

    [i:b6a3d6f8c6]This message was automatically imported from the original Patient Experience[/i:b6a3d6f8c6]

  • Guest
    Guest

    Posted

    I saw an amazing surgeon at Vanderbilt, his name was Dr. Stanley Duke Herrell. Check him out. He is in the RF database.

    Lisa

  • Jody
    Jody

    Posted

    I had a ureterolysis operation. It was performed laparoscopically by (who I condider to be) a very skilled surgeon. My ureters were obstructed by the mass and he surgically removed them from the peritoneal mass and moved to the front of my abdomen, packing some omentum between them and the mass. However, by the time I was diagnosed I had already lost substantial renal functioning. I now have approx. 39% functioning and am hoping it doesn't get worse, as my creatinine is not raging out of control as it was before with the blockage. As with others I had no idea what was happening. I was overwhelmingly thirsty all the time and urinated about every hour; day and night. My kidney's were not taking re-uptaking all the water after filtration and dumping a certain amount into my bladder.

    I had stents inserted 5 times, but they failed every time. They made matters worse. Finally I had 2 nephrosity tubes inserted to relieve the hydronephrosis. I guess each event of hydronephrosis and subsequent increase in creatinine levels counted as an insult to my kidneys, causing more damage.

    I now urinate every hour and a half, but it's better than before. No hydronephrosis, fever, nausea, EMERGENCY ROOM, etc.

    I did develope a DVT as a result of the RF and am now dealing with that. I have no idea how long this will last and I cannot seem to get an opinion from Hematology, Urology, Nephrology, etc. I don't know if I'm supposed to wear a compression stocking or not. My leg swells during the day and goes back down at night. My GP had no ideas on this. sad

    Thanks for your time

    Jody

  • AmandaK
    AmandaK

    Posted

    Do you have an update on what has happened since this post?
  • AmandaK
    AmandaK

    Posted

    I am just curious because I have a friend in similar circumstances and I was just wondering about the healing process and such.
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