I'm New To This

I was just discharged from the hospital on the 9th of May with Dx of Retroprenineal Fibrosis. I thought I had a kidney stone, only to find that there was a blockage around my uretha area. They have put a stent in and I'm scheduled to see my Urologist on the 23rd of May and an Oncologist on the 25th. My concern is that neither of my doctors have ever treat this condition. I live close to St Louis and I'm hoping to find a doctor there. I have fever every day and this has cerntaily been a downer for me because I'm very active. I'm not on any medication at the moment. I think I have an UTI and I going to get a Cranberry supplement, but according to another web site, the acidity in the cranberry erodes the stent. My main concern is finding a  doctor who has experience with this condition. The other web site also caution about not have CT scan but rather MRI's. Any  suggestions would be greatly appreciated.

llwa62 llwa62
4 Responses May 19, 2012

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Hello I am a 31 yr old male. I recently was diagnosed with rf but live in ny. Nyu langone has actually 3 dr's that specialize in this disease. Dr taneja, dr solitar, dr stifelman. I had a biopsy done and since results came back negative for malignancy they will start treating me with steroids to see if this can help-if not they will have to perform surgery.

My husband was diagnosed with RF Nov. 4, 2013. He had pain in the lower back, losing weight, no appetite, etc. Went to the emergency room as the pain was severe enough to make him finally go. The Urologist said he had RF, admitted him to the hospital where he stayed for 6 days. Catheter was put in the KIdney to drain. The Ureter was completely encased with the disease, also spread to the kidney and bladder. Since Nov he has had three stints put in. On predisone 60 mgs a day. We were also told that no doctors on the West Coast has ever treated this condition. Its still a battle. We are wondering what other peoples thoughts are on this disease if you have it, and what treatments are working, or not working etc. Thank you.

Just curious what level of care you have been able to find in the St. Louis area? I have not had very good success and seem to be hitting brick walls each way I turn. Any success you have found in our area would be wonderful if you can share...I will when I feel I have found someone reliable about this disease...

I am also in the St Louis area. I was just discharged from the hospital on Wednesday after getting a stent put in my right kidney ureter. It is painful, but less painful than the hydronephrosis was ( I think). I feel exhausted all the time and just 'blahhhh'. My urologist is supposed to refer me to and set me up with a specialist at Barnes hospital to help. I have been told I will need a biopsy and that there is compression on my vena cava. It all scares me a lot. I will let you know what Dr I am referred to in the area...