Jump to content
Sclero Forums

paula d

  • Content Count

  • Joined

  • Last visited

About paula d

  • Rank
  1. Hi everybody. Went Wednesday to get a perma cath so I can start my photopherisis. Thought it was going to be a big ordeal but it wasn't just a 15 minute procedure although I asked to be put out for it. The draw back is the daily flushing of the catheter. Will start photopherisis. next week. I am 48 years. old and am wheel chair bound and also am recovering from renal crisis. Hoping photo will help me to walk on my own again. Will keep everyone posted.
  2. Yes, very happy about treatment but have to get a permacath. a little worried about the permacath one day surgery. I live in New Milford and am going to Yale.
  3. Finally got the okay from the insurance for photopherisis. I'm gonna have to get a permanent catheter and am still looking for anyone that has gotten one and has any information on the procedure? Will try to keep posted on progress of the perma cath and photopherisis.
  4. Hi, I was referred to this thread by Jeannie in answer to my questions in another thread. I am having problems with getting my insurance company to approve this. Can you let me know what insurance you have and do you live in Connecticut? PM me please if you don't want to post here. Thanks, Paula
  5. I can't have any photopheresis done until I get a 'perma cath' and insurance ok. From reading the information on photopheresis, it sounds like if you can get it done within 2 years of the onset of sclero that it really helps with the skin thickening.
  6. I was refered by a dermatologist to try photopheresis. But my skin is too thick for IV so I have to get a perma cath. I have heard that because of the scleroderma it is a risky procedure for infection.
  7. Has anyone had a perma cath done to get photopheresis? I'm hearing alot of minuses and not alot of pluses. Any info would be greatly appreciated
  • Create New...