Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Hi Family! Just checking in and need some advice. I just got the results from my latest PF tests and CT Scan and all I can say is this disease is really a roller coaster ride! According to the pulmonologist, my lung function is only marginally worse ( volume 52 %, DLCO 34%) but my lung structure is markedly worse. He has decided against putting me back on prednisone but feels that with or without it I am looking at transplant in 2 to 3 years. I know that it is the same for all of us but I feel that every test comes with "You need a transplant" and in between tests he says " I think you may not need a transplant." The only consistent is "You are slightly worse"lol . Sooo, on to the advice part. My COBRA insurance just ended and I now qualify for HIPPA. My two best choices are Kaiser for a whopping $555 a month or Aetna for $535. Aetna is a PPO and I can stay with UCSD , but I would have to pay for my oxygen out of pocket. Kaiser would cover the oxygen but my eventual transplant would be at Kaiser. This is my only oportunity for insurance and whatever I choose will have to be my plan for life since no one will willingly insure me. Because I was a teacher I do not qualify for SS or medicare. I have to decide quickly because right now I am uninsured and I have to pay cash for all medical expenses. Does anyone pay for their own oxygen? Does anyone know of someone who had a transplant at Kaiser? Any advice? Thanks in advance for your imput- R. (54) Sarcoid/PF 3/2006 Carlsbad, California Quote Link to comment Share on other sites More sharing options...
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