Retroperitoneal Fibrosis Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Retroperitoneal Fibrosis. For the discussion boards, we ask that you keep your full name and location private.

I have had this for 15 yrs

Life is about health, family and friends, but sometimes its hard to keep focus on what is most important

Founder of the TransGlobal Health Community Center at

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused:

Hello I was diaginoised with with RF in Nov. 2003, I had my surgery in March of 2004. What makes me outstanding is that I believe That I am the only member of this group to be told in Koren, German and English that they knew nothing about RF and couldn’t help me,oh yes I must not forget they all told me my kidney pain was in my head. My husband was in the military at the time we have no retired to Huntsville, Alabama this year and I am happy to report that at least I don’t need a translater to be told by the doctors that they can’t help me.

hi i am a 58year old woman, who was diagnosed with retroperitoneal fibrosis four years ago ,since then i have lost a kidney function to it, and my femeral nerve in my right leg has been distroyed,due to the condition,i had a tumor on my spine and the thing was growing over it , it took a year more to discover i had non-hogkinson lynphoma i have had treatment for this and am very well at the moment, but i can not walk anymore as the lynphoma has attacked my nerves, and my right leg is damaged from the retro, i was given only two months to live , that was over two and a half years ago, so the docs dontalways get it right.

Kate xx

Born August 21, 1948, Toledo, Ohio.

Diagnosed with RPF (1997)after a long long long bout with the medical profession telling me its all in my head. I have just recently joined the other site to update myself since I was once again dealing with some major issues, and needed help.

My interest in this sight is not only to learn more about it a personal prospective, but to truly come to a greater level of understanding the disease, all of the details, etc.

Last fall I began with migraines, and then my blood pressure sky rocketed, diagnosed with pre diabetes. I felt horrible, and my pain increased. ( Special note, I do have a Medtronic morphinepain pump which has been a godsend) the pain was breakthrough…So you can imagine how high on the scale it had become.

I was put on meds for the migraines and BP, diet for the diabetes, and my docs are trying to get my insurance to give me authorization to go to the U of W to see Dr. David Jarrard, who by the way is knowledgeable about RPF…So now it is a waiting game…

I was diagnosed in 2006. Operated on by Dr. Stifelman at NYU in June 2006 to free ureters. Refused the standard medications and went the herbal/natural route. Still doing well as of April 2007!

My mom has Retronperitoneal Fiborses

I was diagnosed with retroperitoneal fibrosis in early January 2007 and am in the course of what I hope will be successful treatment.

I was diagnosed with IRF in 8/06, I want to join the group

I was diagnosed with idiopathetic bilateral retro peritoneal fibrosis in 2002. Both of my ureteurs (tubes connecting the bladder to th kidneys) were covered with the fibrosis and blocking the ureteurs, and my creatine level was 1! I had to have stents inserted, and I lost 32 pounds three days after the stents were inserted! The stents had to be replaced initially every 3 months, but after one year new stents were developed and had to be changed only once a year. I was put on Potaba. eight tablets three times a day. I also started taking Xango’s mangosteen juice. One once with every meal. In Feb. of 2006 my MRI came back clear of all fibrosis. I am now “cured” and healthy. I hope this information can help others. My doctor is Dr. Michael Stifelman of New York Medical Center in Manhattan. His number is 646-825-6300. I no longer have to see him, as I just have to have an ultra sound once a year to check on my status, which I can do with my family practioner. Also, a positive attitude really helps, as I am a believer in “The Secret” ( Good luck to all of you.
Sari Kyle

I’m interested because my husband has just been diagnosed with RPF - in March of this year. Has bilateral nephrostomies now. Preparing for stent placement on Monday 5/7 and open surgery on 5/21.

I was diagnosed with Retroperitoneal Fibrosis back in 2004 and life hasn’t been the same since. I’m interested in how others are dealing with it as well as any new info on treatment.

My father has this condition. I want to know as much about it as there is to learn.

My name is Earl Smith and I have Retroperitoneal Fibrosis and Carcaniod cancer. I have had an intestinal by-pass operation and am doing chemo. Looking for any help in dealing with this problem, Thanks.

I was diagnosed with RPF and operated on in 1995. Recurred again in 1999 and operated on again . Since then been pretty good. Some pain but main problem being weakness and tiredness all the time. So much so that I was forced to give up work about 2 years ago and now living on benefits (which are not enough to survive on!) But in general I am not too bad and better off than most who suffer this awful disease.

I have retroperitoneal fibrosis. Not sure yet if I want to join, just saying hi and checking this out.

I’m interested because I have this condition myself since 1999. Who knows that my ‘experience’ with it can help other people?