Hi all, my name is Terri. I discovered that I have Retroperitoneal Fibrosis in November of 2005 by way of gallblatter surgery. After that everything has just snowballed down hill. I have had 5 operatations. I am now on about 35 medications a day. Mostly morphine type pain killers. I have something wrong with my left coronary artery which has caused me to be on oxegen 24/7. I would love to chat with you all.
My wife has RF
Hi all…my name is Dave…I am from London and suffer from RPF. I find it interesting to research this much ignored disease even though I can only go so far by virtue of there being so little known about it.
I would be very happy to be a member of Careplace’s RPF support group and exchange experiences/ideas with other members, and generally contribute as much as I can. Perhaps make some good friends along the way would be good too!
Best regards and health to all.
Dave
Just another RPF survivor!!! Keeping on, keeping on!
hi
My husband was diagnosed with retroperitoneal fibrosis a couple of years ago. The wonderful support that I got from the community was just amazing. I would be glad to help as well.
Shree
I am a RF sufferer. Just checking out this website.
want to know if there has been any treatment or meds that help?
hi, I have been diagnosed with Retroperitoneal Fibrosis, I am completely at a loss here. It took 4 months to get it diagnosed, now I wonder if there is really anything that can be done for this. My doctor has me on prednisone,
I’m joining a second time (with different IDs) to go through the sign-up process so that i can tell others how to do it
I was diagnosed with retroperitoneal fibrosis about 9 years ago. I have never met anyone else with this diagnosis, much less communicated with them. I have looked for local support groups but to no avail. I would like to learn how people are dealing with this horrid disease and find out what the current treatment modalities are. I just don’t want to deal with this all alone anymore.
I’ve was diagnosed with rpf a year ago.
Hi I have had RPF for 5 years and Im in pain all the time I would just like to connect with someone so I can talk
I have Retroperitoneal Fibrosis. I am going through a major flare up.
I was diagnosed with retroperitoneal fibrosis in 2002, want to stay in touch with others who have the illness, and get better attention paid to it by the medical community, reseachers and the general public.
I found out I had retroperitoneal fibrosis in 2004 and I have had two types of biopsies one opened and one closed, I had surgery to move my ureter tube last year. I did real well for awhile but know I am starting to have the severe pain again but this time it is on the other side that they did not do any surgery and I take pain pills daily but they are not really helping anymore. I want to learn anything I can about this crazy disease and talk with anyone that has been told thet have it. Hope to talk with some one soon, Diane (Indiana)
My name is Glo,
I am a 71 year old. I was diagnosed with RF in 2005. I have had several surgeries I can’t even keep track. Most of us same to have the same stories.
I enjoy all of the postings. My daughter has been a blessing to have found this site. I wish you all well.
Hi all, I have RPF I was diagnoists July of 2005, I have had the surgrey on my left Ureter moved and wrapped but I also have a mass on my Aorta. I have severe back pain everyday I hate having to live this way but the surgery is awful, and I am not ready for that.
My son-in-law was just diagnosed with this. He is in ICU in New York. I just want to learn all I can.
my spouse was diagnose with retroperitoneal fibrosis march 10,2007.iwant to learn how this will affect our life.