transplant - to Jean et al.

[Guest guest]

I would implore you not to take any single person's

opinion to heart about the pros and cons of transplant.

I don't feel your doctor is being quite fair in weighing

your options for you. I like docs who are very

straightforward, but he sounds more negative than

realistic. Everyone knows there are risks, some of which

can be serious, and there are many medications, some

of which cause serious side effects.

But I'm only 5 weeks out from a single-lung transplant

and I feel like a different person altogether. People can

hardly believe it when they see me. I was on 18 liters with

exertion, but that really wasn't cutting it anymore. I had

reached a point where my sats fell into the 70's doing

almost anything. I coughed a great deal. I had to let my

physical therapist go, as I wasn't capable of doing the

activities anymore. I got worse every week during the

month of March. I tried to stay as active as possible, by

getting out to have lunch with a friend or whatever, but

just getting dressed to go out took a tremendous toll on

me. Showering was a bitch. My doctors and I knew I was

dying, and I'm 57 years old. I had some extenuating

circumstances (blood type and antibodies) which we knew

would likely extend my time on the list. I was double-listed,

in Dallas (for 13 months) and in San (for 7 weeks).

My life was all about the hose up the nose. I was on

continuous 02 almost since my VATS in 2004. I probably

had IPF 3 years before that. I was a very, very sick woman.

My surgery was on my birthday. It went so smoothly that it

took only 2 hr. 20 minutes, and there were and have been

no complications so far. I can take a deep breath in and out,

and oxygenate on room air at 97-99%. I've been so inactive

for so long that I'm quite out of shape, and my large muscle

groups aren't used to getting all that oxygen. That, plus

being only 5 weeks out from MAJOR surgery, mean I still

get a tiny bit winded on my walks around the apartment

complex, but not bad. And I can talk while I walk. I still

have to be a little careful about not hopping out of a chair

too quickly in order not to feel a little light-headed. But I

don't cough - ever. I sleep well. I feel like the old me, and I

never thought I'd feel that again even with a transplant.

My liquid oxygen is already gone from my home, so I won't

even have to look at it when I get there.

With IPF, you give up so much and grieve so many losses.

Now I breathe a prayerful thanks for every morning and

every night that I have this second chance. I breathe deep

breaths for this group when I pray for them. My doctors are

ecstatic that things are going so well. I was released from the

hospital after a week, and I will probably get sent back home

to Ft. Worth the end of next week (the 6 week mark). The

difference in pre- and post-transplant is very dramatic, and

my ONLY complaint is tremors from the anti-rejection meds.

But they've already decreased them and my Prednisone (I'm

down to 30mg daily - usually down 5mg per week) so maybe

that'll get better. I was never delusional, exceedingly grumpy,

hysterical or moody. I never had nightmares. I was only on the

vent for 24 hours. I got anxious a couple of times, but that's

a trade-off well worth it in my book.

I feel like a walking miracle, and I would encourage you not

to rule out the possibility of transplant in your future. Bruce

said I'm making it look easier than it is, but everyone (3 other

people) who were transplanted here the same week as I was

are also doing spectacularly well and recovering quickly. My

transplant team is excellent! I just love the whole lot of them.

Oh, YES, there was pain from the incision, and probably I'll

have intermittent discomfort from that (thoracotomies HURT-

they go in from the back and side vs. down the front) for

a long time. But it's certainly bearable. But I take only Extra

Strength Tylenol if anything now, and I am able to wear a bra

again, which they didn't think I'd be able to yet. My point is,

yes I've been fortunate and blessed, but there are a lot of other

success stories out there, and I've met some of them in person.

They look and feel great, and most have resumed totally normal

lives. And even if I hit bumps in the road, I will still be glad I

did this, even if only for the time I've had so far. My life was

one big dead-end bump before. This has been a remarkable and

phenomenal experience - the most amazing thing that's ever

happened to me, for sure (well, and the births of my children).

And I've been given this time for precious life that I wouldn't

have had otherwise. For me, this was was an option I had to take.

Since April 3, my daughter's gotten engaged and I'll be able

to go to that wedding without oxygen. And I WILL be on the

dance floor in September. I will also be taking a trip to Colorado

sometime in the fall, which makes my heart joyful just thinking

about. I'm simply asking you to keep your options open. Best of

luck to you.

Hugs and blessings,

Gwynnie 57 Single-lung transplant on 4-3-08 at

UTHSC San , TX