Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Stefani, One of the most frustrating aspects of dealing with this disease for many of us is the necessity to do our own research and advocate for ourselves. It does not seem fair that we should have to do this but the reality is we do. I'm going to be very straightforward now. What follows is my opinion and my opinion only so take it for what it's worth. You need to insist that your doctor order a full pulmonary function test. Spirometry alone gives only a small piece of the picture of your lung funtion. You need the rest of the information that a PFT will provide. Insist on a 6 minute walk. This, while not perfect by any means will give you some idea of what your sats do when you are active. These two pieces of information may give you enough ammunition to get your insurance to revisit the idea of paying for pulmonary rehab. It's absurd that you are not able to do something to take care of yourself just because the doctors haven't ordered the right tests. The last and what I think is most important suggestion is to get yourself to National Jewish in Denver for a complete evaluation. There are doctors there that specialize in interstitial lung disease and see patients like you every single day. Most pulmonologists see patients with our type of lung disease only occasionally. They will do many tests and give you a full picture of what is going on in your lungs and recommend your next step. Stefani, I'm a patient just like you. I was diagnosed 3 years ago and have experienced some of the same frustrations you have. The hardest thing to so when you are sick is to have to work so hard just to make sure you're getting the care you need. It seems ridiculous but there it is. It's one of the huge problems that comes with having a relatively rare disease. Please feel free to keep asking questions and venting whatever frustration you need to. We're here to help and support you in any way we can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Friday, April 17, 2009 3:31:42 AMSubject: Re: Hi, I'm new.... got just tons of questions... Beth -Thanks for responding. Yes, I live in Utah. They did one kind of biopsy with the tube down my nose (took 7 snippets of lung tissue) and those slide results were sent to Best Doctors also. The next step was the 'exploratory' to get larger tissue samples. Yes, I live in Utah and I will indeed check out the link you provided. I have not yet had a lung function test other than spirometry. This was also in the list of recommendations out of Best Doctors. I just feel like no one has done their homework but me because I have spent 3 years just getting this information on my own. Thanks ever so much for your support. Stefani Quote Link to comment Share on other sites More sharing options...
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