Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Hi n, I DO remember you mainly because your story is so unique! We have not had any other member diagnosed in Korea. I would vote against the lung biopsy. I had mine in May 2006, got a horrible infection shortly afterwards and double pneumonia the following month. I was very anxious to have it to verify the PF and what caused it. Also, I was assured by four different doctors that the lung biopsy was "the golden standard" ( their words not mine) and necessary to know how to treat me. In hindsight- the only treatment is steroids and I have been on them since a week after the biopsy. I t makes more sense to me to try the steroids, and if they help- stay on them , if they don't- get off of them quickly. It would have saved me a lot of money, a lot of pain and I am positive my lungs and health were further damaged by the biopsy. All though several members have had no problem with the biopsy, I can't think of any good reason to have it, or to cause the extra damage to our already damaged lungs. Good luck with your decision- Sarcoid/PF 3/2006 California Subject: (unknown)To: Breathe-Support Date: Tuesday, July 29, 2008, 1:52 PM Hello All:If anyone remembers my brief appearance in this forum I can'timagine why you do, but you have a fantastic memory! I was diagnosed with IPF in April, 2006, and a few months later went off to teach English in S. Korea. I had almost two wonder-ful years there, before the IPF caught up with me and I landedin a Korean hospital...this was one of the more interesting experiences I had in Korea, and most of the two years was inter-esting! Fortunately, Korean doctors are well trained, and although medical services are delivered differently, they are on a par with medical care here, with the exception of cost. My 12 days in the hospital,including 2 in intensive care, cost the equivalent of $320 US and my Korean health insurance paid another $650. My share included the 24hr a day services of a pbyongwon-a, or substitute family member, as I had no family in S.K...amazing how one cancommunicate without speaking each other's language...Anyway, I'm back in the US with blood oxygen hovering at 90-91(and lower, of course, if I do something like walk across a room...)I do not have health insurance, and only a modest amount of money,most of which I need to live indoors and all that good stuff. In the US I have not seen a pulmonologist, and where I live in N.C. no pulmonologist will see you without doing a lot of invasive (and very expensive)procedure s. Several doctors in S. Korea, and one US internist told me that I would not benefit from these procedures.Another friend, an RN, has told me that I MUST, MUST, MUST have alung biopsy and a couple of other things, I'm an idiot if I don't do it even if I have to live in a tent yada, yada, yada. However, she got a little iffy on the answer to "How will this benefit me?"Can anyone here suggest a concrete benefit to me of these procedures? The best I've gotten from a doctor was "Well, then we'll know what's going on in your lungs." When my follow-up question was "Will it change how you treat me?" the response was, "well, maybe..." spoken in tones that lead me to think the answer was really "well, no, not at all."The trade-off for me is that I might rapidly outlive my money with even a very short time horizon if I'm spending $$$$$ on medical care. Medicaid is not possible in N.C. and I don't want to move to another state where I know no one. S.S. Disability is problematical because 1) they told me I had to be diagnosed by a pulmonologist (and have all those tests) and 2) it would take two years to be approved and I can't receive Social Security Retirement while waiting. (I'm 63)As of right now I'm not on any medication (I was given steroids inS.K., didn't respond) but about to start on oxygen as needed. And onemore thing...I really have no interest in a lung transplant.How do you all vote on lung biopsy, bronchoscopy and whatall for some-one in my financial position? And why?n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 You certainly should answer all the questions for yourself before deciding whether to have a biopsy or not. One of the most critical questions is would you do anything different treatment wise based on the findings. I felt at the time that were I to be found to have NSIP I would do Imuran and Prednisone and if UIP would not. Some would try those meds either way and others wouldn't try them regardless. Clinical Trials are also a matter of thought and would you pursue regardless. Two other factors are your general personality as related to need to know and your health otherwise. Do not let a doctor pressure you into a decision you aren't comfortable with in any part or aspect of this disease. Similarly listen and absorb all you can from the board but don't let anyone else decide for you or apply too much pressure. There is no right or wrong decision when it comes to this disease, only those right for you. > > From: marionhgriffin marionhgriffin@... > Subject: (unknown) > To: Breathe-Support > Date: Tuesday, July 29, 2008, 1:52 PM > > > > > > > Hello All: > > If anyone remembers my brief appearance in this forum I can't > imagine why you do, but you have a fantastic memory! > > I was diagnosed with IPF in April, 2006, and a few months later > went off to teach English in S. Korea. I had almost two wonder- > ful years there, before the IPF caught up with me and I landed > in a Korean hospital...this was one of the more interesting > experiences I had in Korea, and most of the two years was inter- > esting! > > Fortunately, Korean doctors are well trained, and although medical > services are delivered differently, they are on a par with medical > care here, with the exception of cost. My 12 days in the hospital, > including 2 in intensive care, cost the equivalent of $320 US and > my Korean health insurance paid another $650. My share included > the 24hr a day services of a pbyongwon-a, or substitute family > member, as I had no family in S.K...amazing how one can > communicate without speaking each other's language... > > Anyway, I'm back in the US with blood oxygen hovering at 90-91 > (and lower, of course, if I do something like walk across a room...) > I do not have health insurance, and only a modest amount of money, > most of which I need to live indoors and all that good stuff. In the > US I have not seen a pulmonologist, and where I live in N.C. no pulmon > ologist will see you without doing a lot of invasive (and very > expensive)procedure s. Several doctors in S. Korea, and one US > internist told me that I would not benefit from these procedures. > > Another friend, an RN, has told me that I MUST, MUST, MUST have a > lung biopsy and a couple of other things, I'm an idiot if I don't do > it even if I have to live in a tent yada, yada, yada. However, she > got a little iffy on the answer to " How will this benefit me? " > > Can anyone here suggest a concrete benefit to me of these procedures? > The best I've gotten from a doctor was " Well, then we'll know what's > going on in your lungs. " When my follow-up question was " Will it > change how you treat me? " the response was, " well, maybe... " > spoken in tones that lead me to think the answer was really " well, > no, not at all. " > > The trade-off for me is that I might rapidly outlive my money with > even a very short time horizon if I'm spending $$$$$ on medical care. > Medicaid is not possible in N.C. and I don't want to move to another > state where I know no one. S.S. Disability is problematical because > 1) they told me I had to be diagnosed by a pulmonologist (and have > all those tests) and 2) it would take two years to be approved and I > can't receive Social Security Retirement while waiting. (I'm 63) > > As of right now I'm not on any medication (I was given steroids in > S.K., didn't respond) but about to start on oxygen as needed. And one > more thing...I really have no interest in a lung transplant. > > How do you all vote on lung biopsy, bronchoscopy and whatall for some- > one in my financial position? And why? > > n > Quote Link to comment Share on other sites More sharing options...
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