Going home from Mayo

[Guest guest]

Hi all. I saw the pulmonologist late yesterday afternoon after we

had already checked out of the hotel. So, I am just now getting a

chance to send this out. The news..... the good is that my asthma

seems to not be the culprit which we had already expected, I do not

have a definite diagnosis with a name - however, the specialists said

that I have 3 main issues going on. 1) My lungs are shrinking. We

already knew that my lung volume was decreasing, but did not know

that was because the lungs themselves were getting smaller. They are

currently about 43% of expected size. 2) The muscle strength in my

lungs overall (not just my lower lungs) is very low - about 24% of

expected. and 3) I have to get off of the steroids (which we all

agree on - the docs in Gainesville, me, and the the docs at Mayo).

The plan - I will see Dr. Beebe in Gainesville Monday morning.

Between now and then Dr. Pasqual from Mayo will have communicated

with him about a pulmonary rehab program. There is a good one in

Gainesville I believe. Dr. Pasqual and Dr. Beebe will work out the

best plan of action and Dr. Beebe's office will get that set up for

me. The rehab will help with the lung size and strength. The other

part of the plan is the prednizone. Dr. Pasqual is going to start me

on metheltrexate. I will take one pill on Mondays for two weeks,

then 2 pills on Monday for another 2 weeks, then work up to a full

dose of 3 pills on Mondays. Once I have worked up to the full

dosage, we will start a slow step-down off the prednizone - something

like 5mg/day for the first week, then another 5-10/mg per day for the

2nd week, and so forth until I get down to a preferred dosage of 10 -

20mg/day. Hopefully 10. The metheltrexate will work by gently

suppressing my immune system so that it takes much less prednizone to

do the same thing. Dr. Pasqual also indicated that he is going to

have to do a little more research to confirm it, but he believes that

the muscle strength issue is a direct result of the ozone issue from

May. He communicated very strongly that if at any time during this

process I deteriorate and have to be hospitalized again it will be

back to Mayo for some more intensive and invasive inpatient testing.

However, that is not going to happen. This is going to work and I am

going to get better! Love you all.

Madeline