CellCept; all-over-the-map to friends

[Guest guest]

I was on CellCept before transplant as well as now. I

didn't notice any difference on it. I was on it during

my rapid decline the 4-6 months before transplant.

Now I take 1000mg. twice a day. I have bad tremors,

and I tried Klonopin for them but it didn't work. I'm

currently down to 12.5 mg. of Prednisone and will

taper down to 10 in early January. Then after another

month or so, I'll go down to 5 - at least that's the

goal.

Peggy, my body is so immunosuppressed, and with

me taking Prograf for anti-rejection (also causes

tremors), my body takes longer to heal from every

little thing. But I mostly just bruise easily. I've been

exceptionally lucky about not catching any bugs or

getting any sinus infections or having bouts of

rejection. At least not that I know of. I haven't been

able to have a bronchocoscopy for months while

I'm on the Coumadin. But I get to stop it in late

January, I hope. At that time they'll do a VQ lung

scan and another doppler on my legs to check that

I don't have any more clots and to see the status of

the two that are/were (?) in my lungs and one in my

right leg. I'm also due to go to the gastrodude to

make sure my GERD is under control. It takes testing,

because I really don't get the classic symptoms, but

it's very important after transplant not to have any

aspiration.

This will definitely be a bittersweet Christmas. Being

the first with my new lung is amazing. I'd have the

transplant again in a heartbeat. But we'll all feel the

sting of my mother's absence this year. We buried

her ashes last weekend, and this Saturday would

have been her birthday. But I also have the addition

of a precious new son-in-law to share in the family

traditions on Christmas Eve. Both of my kids will be

here Christmas Eve and then will leave sometime

Christmas day to go be with the in-laws in Austin.

I don't like sharing them, but I don't say a word. It's

hard on them, too, after all. I'm lucky to have them

at all. They're all so darling and happy.

My cousin Dorothy is having her annual Christmas

party for our large extended family this weekend.

I'm looking forward to that - it's always a lot of fun.

I went to the Kimbell Art Museum today with a group

of friends to see an antique Italian nativity scene

carved out of terra cotta. It is truly phenomenal. The

details are simply astounding - the fabrics, the animals,

the hair, the expressions on the faces, even the tiny

carved grapes! I'm so glad I got to see it.

Bruce, you need to see it!

The p.t. I'm going to for my right arm had better be

helping, because it's no fun. But I think it is beginning

to loosen up some of the muscles in my shoulder and

elbow. I wouldn't have these problems if I hadn't fallen

TWICE in the past and broken both my shoulder and

my right hand. Call me Miss Grace!

There's a product I mentioned a long time ago called

Neil Med Sinus Rinse. I much prefer it to a netti pot.

It comes with pre-mixed packets to dissolve in distilled

water and you squeeze it out of a plastic bottle. What I

like about it is that it doesn't burn. The netti pot always

burned my nose like crazy and gave me a headache.

I get mine at a CVS, but you can usually also get it from

your ENTdude.

I hope everyone who is feeling puny these days feels

much better before Christmas. I decided, because of

time and my right hand, not to send any cards this

year, but thank you very much to those of you who

have sent or will send them. I love Christmas cards!

To the lurkers, one of which I've practically become,

we do care about you. To all the newbies, keep coming

back, advocate for yourself, stay informed, and focus

on the things you CAN do. Never lose your faith or give

up hope. To the caregivers, you are a very special bunch

indeed. You improve lives and make the world a better

place.

Brett, I think of you often and hope that you are feeling

as well as possible and embrace this Christmas with your

beautiful family.

Joyce, the trick with transplant is that you need to be

strong enough to survive the surgery but sick enough

to need it. Most people on the list have been told that

it's predicted that they won't survive for more than a year.

I was not in the hospital, as some are, but was close to

death's door when I got the call. But I also know people

who are listed who still only use oxygen at night, which

amazes me. Some people are also listed then put on the

inactive list until they get worse. But they don't have to

go through the whole evaluation again. Age of recipients

varies among the centers. I know they'll transplant older

patients where I went, at UTHSC in San , than

they will at UTSW in Dallas, where I go to clinic now.

I was double-listed, first in Dallas for 13 months, and

then for 7 weeks in San . Thank goodness for

San ! And they were great about not making me

repeat the whole tx evaluation, only a few things. Probably

because both places are part of the Univ. of Texas system.

I probably won't make it to the air party this time, but if

I pop in, I will definitely come as myself and to do a lot

of dancing!!!! Have a blast, let yourselves go wild. I'd

love to see Sher in her pink frock and BWBB smiling the

evening away.

I hope everyone has a lovely holiday, however and

wherever you celebrate it. Please pace yourselves and

don't overdo. Enjoy every day of this blessed season

and may God bless you and your families. My wish is

that everyone with any form of PF remains stable in the

New Year!

Hugs and blessings,

Gwynne 57 Single-lung transplant for IPF on 4-3-08

at UTHSC - San Fort Worth, TX