Retroperitoneal Fibrosis
Retroperitoneal Fibrosis
Email Exchange
Wilma Jones
I am interested in Emailing others with RPF, I have recently been diagnosed and am confused about some aspects of this disease.
Email address:
wepjones@comcast.net
Michele McBride
I am 51 years old and have just been diagnosed with RPF. I have double stents and will be undergoing surgery next week. The information on the net is very frustrating, I feel like I'm in a loop. I wanted my Urologist to cut it all out, and he gave me a stare, said no, it's too entangled. I'm so very confused. Please email me with any enlightenment, I will welcome all of your input. Thank you....
Email address:
mmcshihtzu627@aol.com
Joan Myers
Florida
Hi, my name is Joan Myers. I was diagnosed last Sept. and have had a rough time. After being misdiagnosed for three yrs., I went into renal failure and have had Nephrostomy tubes and stints put in. In Dec. I had surgery for the ureters done by a doctor at the University of Miami and since have only the stints in. I just want to know what to expect in the coming years. I am almost 57 years old and would like to know what the future holds. Thanks for listening as there really isn't any information on the Internet.
Email address:
Diggy86@aol.com
My mother (65 years old) was recently diagnosed with idiopathic RPF. She had her kidney removed 3 weeks ago due to this disease. The urologist she is seeing knows very little about this and how to manage it. He sugested that she see a rheumatologist. I'm running into the same thing here. Most of them don't know a lot or anything about this. We live in Southern New Jersey and have been seeing docs located at Jefferson Hospital.
I'm scared to death, because she is in a lpainful she can hardly walk. They're not sure if this is due to the RPF or stenosis (which she has as well). Any help or info anyone can give me would be GREATLY appreciated!!!!
Email address:
mjq99@comcast.net
Cheryl Coffee
For everyone looking for someone to talk to, I am more than available. I was diagnosed with RPF in May 1999 after five months of severe pain. Misdiagnosed so many times that I can not list them all. I have had the ureter surgery and am living with this disease daily. I work a full time job and manage the disease through pain medications. Over the past six months I have begun to experience some problems with circulation in my legs. I was fortunate enough to have found a very experienced Urologist in Columbus and will share his insites with anyone who needs information.
Email address:
favoritesister1954@yahoo.com
This page is for the exchange of email address of those wishing to correspond with others affected by Retroperitoneal Fibrosis and similar rare diseases. In order to filter out unwanted postings, we ask that you send your request to submit a message by email to debsays_hi@yahoo.com (Please send it with an re: Email Exchange) If you should choose to remove your message at a later date, email us with your request and we will take it off the site.
Retroperitoneal Fibrosis
