My Story

Well, lets see, it all started 11-27-06, I noticed that my right calf area and ankle was swollen. I called by doctor and he told me to go to the ER and get an untrasound for fear of a bloodclot. Well, I was admitted and for the next four days, I must have had 5 different ct-scans, mri, mra, ultrasouns, ekg, x-rays, and many, many tubes of blood taken. After 4 days, the final verdict was RF. So, I met with my family doctor and of course, he could not help me. He referred me to the University of Miami, where I am being treated now. I had a ct-scan assisted needle biopsty, thank god, no cancer, but RF was confirmed by the urologist that is treating me. Since I found out about this RF condition that I have, I have not experienced any pain at all. I feel terrible for all the other people that I have read about who are having problems. My symptons have been that the veins in my right leg get swollened and the veins in my foot become a deep purple color when I am on my feet for more than an hour. When this happens, I sit with my leg elavated for about 5 minutes than everything goes back to almost normal. Just recently, the last 2 weeks, I have been experiencing some pain in the upper portion of my butt area below my waist, I guess this could be considered lower back area. I am concerned about this. The pain is not constant. Sometimes, its not that bad at all, but a couple of times, I have to sit. The pain only occurs when I walk. I am on the following treatment: Tamoxifen 20MG Twice A Day Prednisolone 60MG Every Other Day For 30 Days THAN Prednisolone 30MG Every Other Day For 14 Days THAN Prednisolone 15MG Every Other Day For 14 Days THAN Prednisolone 5MG Every Day. I started the 30MG Schedule last week. I am also taking Atenolol/Chlorthal 50/25 TBMYL for High Blood Pressure. I read somewhere that Atenolol was linked to RF. If anyone has any input or past experience, I sure would like to hear from you. Thank you so much and May God Bless You, Lou South Florida

Hi Lou
thanks for telling me your story,first i thank god i am in the UK we have such a great free health service, i had very high blood pressure to start with and terrible head aches, something i had never suffered with before , so my Doctor gave me tablets to controll my pressure this did nothing to lower it, so he did blood tests

I was in work feeling very tied and my head was killing me and got a phone call from him, he told me to get to the hospital right away , the renal team would be waiting for me , well you an imagine i thought how very ER this was.

When i got to the hospital they where waiting for me, i was tested and prodded and with- in two hours i was having blood drips, saline drips, tubes into my kidneys, these where put into my back and directly into each of my kidneys i was told i was in renal failure, three days later i was diagnosed with RF,
It was growing on the base of my spine and must have been there for years , me just thinking the pain in my back was me getting older, and it was this monster growing in my back. it had been more active on the right side so my right kidney was irreversibly damaged and my left kidney was working at 85% i was in hospital for seven months, and told there was nothing they could do, the next thing that happened was i started to get terrible pain in my right leg, behind my kneecap i could not sleep at all it was so bad nothing took the pain away that was at the end of 2002 in the new year on the 18th of Jan my face dropped on one side and i was taken back into hospital with in two hrs i was sent to our Nero unit in Liverpool and diagnosed with Non–Hodgkin’s lymphoma, the Rf had been growing over it and i was in a bad way, it was then i was told i only had two months to live , i was given chemotherapy and thank god it worked i am still here the tumour has gone o the RF is no
longer there its been a long and terrifying journey but thanks to Gods grace i am doing well, i am in a wheelchair now as there has been a lot of damage done to the nerves in my legs.but i get around well and am back at work, only for a few hours a week but i enjoy it,

you take care my god walk with you always

Kate xxx

----- Original Message ----
From: Lou33025
Sent: Friday, 20 April, 2007 3:24:12 AM
Subject: [rpf] My Story


Have we communicated? If not, please accept my apologies.

I’m supposed to get copies of all posts to this forum, but I don’t recognize yours.

If you’d like to reply to me directly (not via the forum) please do so.

There is support & help available. Most important is finding medical support that has experience in treating RF successfully. There are Docs who fit this restriction in the Miami area (I think).

My addy is