I am from Florida, U.S.A. I was diagnosed with Retroperitoneal Fibrosis

I am from Florida, U.S.A. I was diagnosed with Retroperitoneal Fibrosis in 2001. I'm sure I had it much longer, but no one thought to look for it. It was a completely unheard of disease for me, and they advised that I must have immediate surgery, or I would lose my left kidney. So, I went into surgery with a surgeon who had never done this before, and a urologist who had never seen this before, etc. The doctors said that this condition would disappear even though they had removed none of it. They removed only chunks for biopsy and moved the ureter out of the way of the mass. I believed them that it would go away and went to work as soon as the pain from surgery subsided. About 9 months later, super-sized pain came on and I was no longer able to work. I was on a duragesic patch, methadone, whatever it would take to kill the pain. Problem was, nothing could quench the ever present pain. I went through many stages with this disease, including finding an internet support group and finally educating myself on the disease itself. I found out it would not disappear as I was told and I needed to live with this forever. I went through all the psychological stages of adjusting to this news. I also found out that my kidney was not working. Stents were inserted, and I started on prednisone. I began at 60mg and tapered from there. I was on it for 3 to 4 months. I discovered that it shrunk the mass considerably and my stents could be removed. I began having regular CT scans and IVPs. I was living in Arkansas, U.S.A. at the time. I had no specialist who knew anything about this disease. Basically, I would find out what the best course of action there was and advise my doctor. It was a lot of responsibility for me, but I learned how to research and take this responsibility and go with it. It was empowerment to some degree. We moved to Florida and this remained the same for one year and by accident, I found out that my primary doctor thought I was just out to get our disability! I was crushed, and again, went looking for a doctor who knew something about this disease so I wouldn't be thought of as fraudulent. I went to Moffitt Cancer Center and found just such doctors. I am so greatful. I also have a new primary doctor here at the University Physicians Group who also understands I am not faking but in real pain and in need of monitoring. I did already find a pain doctor who also understood. Fortunately, I also had a judge who understood who pronounced me disabled so that I could get disability benefits. I would have to wait a whole year, however, for medical benefits, but could get monthly entitlements which for me, was only $580 per month but better than nothing! In Febr. I will be on our Medicare and hopefully, a supplement to help me with these medical bills. They have been tremendously high. I now have CT scans, Renal scans, tests on blood and urine. I am taking sustained action morphine as well as the hydrocodone, but am not acheiving perfect results yet, however, the pain specialist is working with me towards that end. I was sent to a physical therapist who helped me with the muscles for an easier urination, although she couldn't help with pain, said it was nerve pain. By the way, I had previous lung surgery to remove a mass also and it was just some fibrous material, and have something similar in a breast, also have another spot showing up on my other lung. I had more lesions or spots or another mass show up in my abdomen also, yet prednisone disappeared that as well. I don't know if there is such a thing as having this systemically, but it would seem so on my account. Thank you for this chance to share. Kathie :ill:

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