Welcome back n

[Guest guest]

n,

I've often thought of you and wondered how you were doing. I'm so glad you made you way back to us although I'm sorry that you are dealing with this blasted disease.

I'm sure that some people are pressuring you to have a biopsy etc etc. It's a very personal decision and not one that someone else should make for you. Give your circumstances I totally understand why you are not enthusiastic about doing this. In spite of it being "just a biopsy" it is major surgery and they do remove pieces of your lung. There is a recovery period and it takes some of us longer than others to get through it. I also live in North Carolina (since December of last year) and you are correct. Medicaid in NC is next to impossible to get unless you have absolutely no resources. Social Security Disability is something you should apply for immediately. You have a diagnosis and I'm assuming you have medical records. Fill out the application, attach copies of all your medical records (including whatever you have from South Korea) and send it in. They may need you to see one of their doctors but

then it will be at their expense. Diagnosis of pulmonary fibrosis does not require a lung biopsy, it is often made on the basis of a high resolution ct scan. Once you are approved for SSDI you have a two year waiting period for Medicare unless you are already at retirement age.

I'm not sure where you live in NC (I live in Durham) but it's hard to imagine a pulmonologist refusing to see you without you agreeing in advance to have alot of procedures done. I receive my care at Duke and since I'm in the two year waiting period for Medicare, I am getting my care at no charge thanks to Duke's financial hardship program. There are some tests that are in your best interest to have done. A pulmonary function test will tell you where you are in your disease process and help the doctors assess your overall condition. You don't have to have them done often but a baseline at least to start with is probably a good idea. The other thing I would strongly encourage you to get done is an echocardiogram to look for pulmonary hypertension. PH is a common complication of fibrosis and it is treatable if it's found early enough. PH will kill you faster than fibrosis so it's best to know

if it's happening.

I'm sure you will get other replies to your post. Please consider yourself home and among friends!!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

(unknown)

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