[Laura]

Nicole,

It is very interesting what you wrote because it was pretty much exactly how the pulmonologist felt too. I know I have been a pain in the ass to the nurses the past week but you are right, I need to push for things that I don't feel is right and I am not there to be their friend.

Anyhow, so I meet with the pulmonologist and he was AMAZING!! I loved him; he was great. He expressed great concern over the symptoms I have been having and basically flat out stated "it is not in your head". DUH, that is exactly what I have been saying to my main doctor but no one was listening to me. He ran a chest CT and another set of pulmonary function tests. Every pulmonary function test I have had has come back lower (and again today, lower). This concerns him greatly. The chest CT also showed the nodules and infiltrates in the right lung, which was also concerning. According to the CT report it could be an infection but the doctors don't seem to feel this is the case because I am "well". He basically stated he thinks I could have bronchiolitis olbliterans. He said it is hard to officially diagnosis this but states that it very well could be this and I need to be followed very closely. I am going to have follow up chest CT and PFT in a month and go from there, unless of course things become worse. He also increased my Flovent to 4 puffs twice a day. He is also going to have me take azithromycin M/W/F. I guess research has shown that this keeps the lungs healthy and happy. Interesting, huh? I have to admit that I am nervous about all of this especially since I do know what happened to Mark and the fact that I feel like my BMT dr is brushing this off. I wish I had an official stamp of a diagnosis too but I will take what I can get. It is not that I want to take Prednisone but I worry that the treatment they are doing isn't enough?? I need to do some research on this. He told me that any damage that is done is not reversible, so why wait for the damage to be done? Then again, what if it is an infection and they are not treating that? However, I do honestly feel good, but do I just feel good because of the Prednisone? Yesterday was my last day taking that. So he didn't officially make a diagnosis but stated it could be B.O. and just needs to be followed carefully incase that is what it is. AHH frustrating. Anyhow, I am going to go back to work tomorrow because I feel good and I don't feel like there is a reason not to go unless you have different thoughts???
I greatly appreciate any advice/ideas/etc you have
Laura