My appointment was at 8:20 AM Nashville
time. We (Cathy and myself) left at 5:15 AM (Georgia time) because
of the heavy fog and possibility of heavy traffic. The fog was not a
problem until we crossed Monteagle. We arrived in Nashville about
6:30 AM (Nashville time) and ate breakfast at the Pancake Pantry. We
made it home about 6:30 PM (Georgia time).
I had a good and thorough exam and the
doctor(s) took lots of time to ask questions, listen to me and my
wife, and explained what he thought was happening. They were able to
work me in for lots of tests while I was there--and I do mean lots of
testing.
The Results!
(1) There is no evidence of lung
disease! My lungs are clear. No sign of cancer, COPD, etc. This is
good news and helps clarify what is happening to me.
(2) The values of the Pulmonary
Function Testing were worse than they were in November and December
of 2010 when first tested at Vanderbilt. Even taking into account
all of the treatments I have had since then, my condition continues
to slowly decline.
(3) My diaphragm continues to be at
about 40% of normal strength. This is why my breathing is so
difficult. My respiratory muscles are not working correctly making
inhaling and exhaling hard. My inhaling is better than my exhaling.
According to my test result, I have less exhale force than an 80 year
old woman. So, its harder to get the old air out to get the new air
in. To compensate for the poorer air exchange, I breathe very hard
and my pulse rate goes between 120 to 150.
(4) My main diagnoses consists of two
conditions: Myasthenia Gravis, Small Fiber Neuropathy. Each of
these can cause breathing issues and effect the respiratory muscles
in different ways. My breathing problem could be caused by either or
both.
What's Next?
I continue the Cytoxan infusions in
order to lower my immune system. Since both my Myasthenia Gravis and
Small Fiber Neuropathy are autoimmune related, lowering my immune
system should reduce the symptoms and allow time for my body to heal.
The amount of healing depends on the amount of damage.
I meet with my neurologist in November
and we plan to discuss some nerve studies on my respiratory muscles.
Right now I am not in immediate danger
or respiratory distress (except for a serious infection). The primary
focus is stopping the progression of these diseases. The secondary
focus is "what will we do if we can't stop the progress?"
We shall see. Until then, I am learning to live with limitations.
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