• Cynthia and Profile picture of paulapaula are now friends 2 years, 6 months ago

    • Cynthia, I did reply to your questions re oxygen suppliers in Rhode Island but for some reason I have not seen my reply.
      I live in North Kingstown and use Apria who are on the East Side I believe.
      They have been excellent both with the home concentrator and the Inogen portable unit. They cover the country which is important to me as we leave in October each year for Florida and their service is just as good there.
      I have recently been informed that my IPF is not auto immune connected. So when I visit Mass General later this month I look forward to seeing what’s next.
      There are some wonderful ideas on these posts and I wish you well as you move forward.
      Pamela

    • Cynthia, Dd you get onto the transplant list at Mass General?
      I am pleased I moved to Temple who appear to have an excellent program and my ex-daughter in law has kindly offered me her home for us to stay an hour away from the hospital for as long as we need. I feel truly blessed.

      • That’s great. I wish you the best, and that’s terrific that you’ll have a place to stay. I went to Women & Brigham for an initial lung transplant consult and left feeling pretty anxious about the whole thing. Soon after that my diagnosis changed to autoimmune and my pulmonologist thinks there’s a good chance we can get the fibrosis into remission. I’ve been on the cellcept and prednisone for three months now, and I’m doing better. I’m 72 so I’m now thinking if I can get close to 80 without a transplant I’d rather do that.

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