We were able to check off some more things off Patrick's list of things he does not have but ended up adding a murmur to his list. We have gotten used to checking off things from the list like Gaucher's, Fanconi, Celiac but lots of dead ends and wondering why?
Email July 29, 2014
I will try to
keep this one short!
We visited
the rheumatoid doctors (at Duke) yesterday...
joint pain -
does not have rheumatoid arthritis; not sure why he has pain but if he starts
limping or favoring his joints to bring back; going to talk with liver doctors
to see if there is anything related with portal hypertension (which he has) or
congential hepatic fibrosis (which they think he has) and the joint pain
fevers -
"sounds like he has recurrent fevers" (ha! this tickled me as I
brought them in my timeline where I tracked his fevers over the last 7 months
where they range from 101-104 for a period of 5 days; not sure NIH would see us
if it wasn't recurrent!) we need to have blood drawn at the peak of one
of his episodes to see what else might be going on; the side effects of the
medicines they would give cause side effects that are not worth the risk to
them (spleen, platelets), tylenol doesn't help, motrin raises the temp.
headaches and
bloody noses - not sure why
shortness of
breath and heart - this past Sunday Patrick got real winded and couldn't get a
full sentence out, he said his heart was beating fast; few weeks back he
complained about how he could hear his heart in his head; complained yesterday
again about his heart hurting and beating fast, his blood pressure was real low
yesterday...they took it twice and had same result; two doctors came in and
they heard a heart murmur and a 'rub.' She said the 'rub' would be fluid
in the heart? They are rheumatoid doctors so she said would run an echo
and EKG that could confirm this. Results should be in today or tomorrow.
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