Tuesday, September 10, 2013

Update from todays Doctors Visit

I usually don't do a midweek update but today you get a bonus blog update.  I had an appointment with my pulmonologist who also happens to be in charge of the critical care department at the hospital I go to.  We had to waste a lot of time with forms for my disability insurance but once that was all settled we focused on current condition and the plan going forward.

My current condition is still considered refractory and regressing.  That is the medical lingo for I am getting worse and all the treatments we try are not working.  My doctor feels we are doing everything that can be done but would like me to see a friend of his at the local University Hospital.  I feel really lucky to have a doctor that takes the time to discuss my case with his friends that are also pulmonologists.

She does research in interstitial lung diseases and while she does not specialize in studying sarcoidosis, sarcoidosis is an interstitial lung disease and she does have a lot of experience with it.  She is not sure she can offer anything new but would be happy to consult on my case since my doctor has requested it.  Of course I wish I did not have to consider this but unfortunately my insurance company will not pay for me to go to the university hospital so all the care she could offer would have to be paid for out of pocket.

I am happy to put out cash for anyone that can help me but it is a real shame that I might run into a situation that I could not afford care that would help me.  To wrap it up, I am getting sicker and none of the drugs that are available are having much of an impact.  I do have a doctor that care enough to go the extra mile to try and help me, also fill out a bunch of crappy paperwork for the not so nice insurance company.