life sucks
Spent several months pursuing clinical trials for a drug to combat pulmonary fibrosis. This drug is not available in the US. It is available in 27 other nations including Canada and Mexico, but not here. Got all the way to the moment of receiving the drug and was turned down........very frustrating. They hope to have it on the market in America by 2015....maybe. My prognosis.....2015....maybe.....
Makes me feel like there is no more hope. No sense in going on......seems like I am just existing.....waiting for the grim reaper to ring the doorbell.
Worse yet....I now have no physician. The pulmonologist that I was seeing prior to this pursuit has a nurse that defeats his ability to be a doctor. The pulmonologist that I was seeing as I was pursuing this clinical trial, dropped my like a hot potato when the national council rejected me as a candidate. And the first pulmonologist seems to have disappeared. Now I have to start all over and this time I will have to wait a little longer. And unfortunately, I will have to redo all the tests, with the exception of the biopsy. Still, that is another $15K in tests to redo.....why oh why can't one pulmonologist use the same test results as the last one.....what makes THEIR technologist different?
life sucks......and on top of all that....all the houses we have been putting contracts on get sold out from under us....
Makes me feel like there is no more hope. No sense in going on......seems like I am just existing.....waiting for the grim reaper to ring the doorbell.
Worse yet....I now have no physician. The pulmonologist that I was seeing prior to this pursuit has a nurse that defeats his ability to be a doctor. The pulmonologist that I was seeing as I was pursuing this clinical trial, dropped my like a hot potato when the national council rejected me as a candidate. And the first pulmonologist seems to have disappeared. Now I have to start all over and this time I will have to wait a little longer. And unfortunately, I will have to redo all the tests, with the exception of the biopsy. Still, that is another $15K in tests to redo.....why oh why can't one pulmonologist use the same test results as the last one.....what makes THEIR technologist different?
life sucks......and on top of all that....all the houses we have been putting contracts on get sold out from under us....
Replies
Keep away from MD\'s that are ONLY involved in a clinical trial. Generally, the tests you need are chest film, HRCT and possibly 6-minute walk. If you\'ve already had a biopsy, another one should not be needed. If you decide to get another opinion, they may want to see the slides. From what you\'re telling me, it sounds like you\'ve already been diagnosed so what\'s to be determined is if your disease has progressed. Look, if you\'ve been diagnosed with IPF, find your way to a transplant pulmonologist. It may take a referral and sending your records in advance, but what have you got too loose? Even if you qualify, it in no way means you have to have a transplant. Don\'t let it go too long. Good luck and God Bless!
to answer your question,,, if the tests are older than 6 months, they may want a re-do. I was planning to go to UCSF and they wanted specific parameters for the HRCT. I had that HRCT done, sent it to them, but was too sick to travel to the appointment. Expect that in most cases unless your diagnostics are very, very recent, a new Dr will reorder. That\'s just the way it is.