It has been a while, so I (Fran) thought I
would let everyone know that the Bi-Pap machine is doing it's job. The
technician decided we needed a new machine. It took a while for the supply
company, technician, and doctor to get on the same page but finally tweaking
some numbers solved the problems. I think it took so long because I was trying
to be nice and not my usual impatient self. Well sometimes vinegar works better
than sugar. Yes, the alarm still goes off but only several times a night. Steve
is getting a restful sleep and wakes up refreshed. He will be trying a new full
face mask in April because the smaller mask irritates the bridge of his
nose.
For those who asked, the machine itself is whisper soft. If you use an
older machine and it is noisy, get yourself a newer model.
Life never
stays uneventful for long. For several days Steve complained of an odd
sensation on one side of his buttocks. He was worried he was developing a bed
sore.
So what did it turn out to be......SHINGLES! On day 3 I could see
the signs of small blisters in a linear pattern. We went immediately to the
doctor. Funny thing is that Steve had the shingles vaccination three years
ago. We are finding out that it is only 67% effective. Between the vaccination
and the prompt dosing of an anti viral drug he has a mild case. Thank goodness.
Hopefully it will be all cleared up by our next posting.
Some good news
is that the FDA has finally approved the drug droxidopa. This drug has been
used successfully in Japan for decades for orthostatic hypotension.
People
with OH have a sudden severe drop of blood pressure when they stand up, causing
dizziness and sometimes fainting. It will be available in 6 months. We will see
our GP about this. If he does not agree to prescribe and monitor it then we
will have to deal with our neurologist. We will keep you posted.
We hope
you are all seeing some signs of Sping wherever you may be.
Fran and
Steve.
It blesses me greatly to read of your journey with M.S.A. Our dear friend is battling the same illness, so I understand in a small way the huge challenge it is. Thank you for sharing your story.
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