Monday, October 21, 2013

New Doctor, Good Specialist

Over the last three years I have seen quite a few specialists.  Doctors that are the experts in their fields.  After seeing these specialist I rarely come away with anything useful.  More often than not I know more about sarcoidosis than these specialists.  There have also been occasions where doctors have quoted from twenty year old text books that are not accurate.  To recap I will go to a specialist and pay them a pretty good sum of money to be given wrong information.  If you think I sound bitter I would answer I think I am jaded not bitter, all right and a little bitter.

That being said I went to our local university hospital on Monday to see our local (state of Utah) interstitial lung disease specialist.  I was not holding my breath, literally or figuratively.  That being said the specialist took an hour going through two inches of my medical records plus imaging and when she finally came into the exam room it was breath of fresh air!  Let me make one thing clear I have never had any doctor go through my entire file before they have seen me.  Outside of the doctor that is responsible for the majority of that two inches I have only had one other doctor give a shit and get involved in my case.  I guess that is a total of three doctors that have given a shit, I am feeling lucky at the moment (no sarcasm).  I hope I have articulated how special it was for this doctor to take them time to give me care that is actually informed.

Now for the mixed news, otherwise known as reality.  She did not think there was any reason to treat the sarcoidosis aggressively, that at this point I had been on every group of drugs available and they had little effect on the course of the disease and the risk of these heavy duty drugs was not worth the small benefit I was receiving.  I know this sounds like bad news and I suppose it is but I had thought as much on my own for the past three months so even though it was bad news at least it was old news.  The good news was there are two drugs that could potentially increase the quality of my life.  Drug number one could help me stay awake and drug number two that may alleviate the pain from the extensive nerve damage caused by the sarcoidosis.

At this point I am excited to be awake.  I do not allow myself much hope and I try to take each day for what it has to offer.  That being said I hope I can start being awake, it does not seem much much of life if you are asleep.

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