Re: to Jim et al.: VATS & transplant/Gwynne

[Guest guest]

Hi Gwynnie. ... Just wanted to pop in here and wish you well and thank you for the update. I think of you so often and wonder how you are doing...

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

to Jim et al.: VATS & transplant

Hi Jim, I know you're facing a hard decision. I was one of

those who had a VATS biopsy (in 2004) and it was

pretty much of a breeze, although I received the

diagnosis - IPF/UIP - that was the shock of a lifetime.

But I had no complications, no unmanageable pain

(and I'm a wimp about pain), pretty quick recovery,

no nightmare stories about chest tube removal, etc.

I took Interferon gamma by self-injection and stayed

stable (probably just a coincidence) for a year before

taking a downturn. I was put on 02 even before the

biopsy after my stress test showed that I was severely

hypoxic. There's a good chance I had IPF for nearly

three years before dx, and like so many others was

being treated for allergies and asthma. My shortness

of breath was my chief complaint.

After the Interferon, I went on CellCept, which I

was on prior to my single-lung transplant this

past April - on my birthday! At the time I was on

continuous 15-18 liters of 02, which wasn't really

doing the trick, and I came darn close to not making

it to transplant. I was double-listed, in both Dallas

and San . I waited for 13 months in Dallas

when I got the call from San , after being

listed there for 2 months.

I'm still on CellCept (an immunosuppressant), Prednisone

(tapered down to 15 mg. from 80), Prograf (an

anti-rejection med), and a bunch of other meds that

are anti-fungal, anti-bacterial, for reflux, or for

general protection. I have again been very lucky in my

recovery and done very well. But I also did everything

I could to take care of myself prior to & since transplant,

and I had a gifted surgeon, a strong faith, and a great

support system.

My only big complaint - and I was told countless times

that transplant is a trade-off - is the shaking (tremors)

I have from the meds. I have trouble eating food

that can't be speared (like rice), and there are many

other challenges like writing and doing my makeup

and hair. But I can breathe. I'm in pulmonary rehab

and can tell that it helps gradually to increase my

strength a bit each week. I can walk a mile now around

the track.

This summer I went with doctors' blessings to Colorado

on vacation and at the end of the three weeks I

was found to have a blood clot on each lung, for which

I now take the blood-thinner Coumadin. That was the

first hitch since transplant, and I realize how lucky I am

to be here, although I hate the fact that my new lung

has a clot on it. Hopefully the clots are dissolving now.

I'm still very much in the medical "loop", with frequent

labs and monthly transplant clinics; a twice-daily log

on which I record vital information such as spirometry

and blood pressure; and other doctor visits (this week

I had tubes put in both ears). Keeping up with meds

is a regimen that takes discipline and some getting used

to. Last week one of my spiro numbers - my FEV1 -

at home was a little low, and I had to go into clinic to

have a spirometry there. I also had a mild sore throat,

which can be a red flag. I thought I might have to be

hospitalized, but I lucked out and my numbers there

were rock solid. We decided part of the problem is my

technique with my portable spirometer, which I worked

on.

I feel tired quite often but less so than before, and I've

had a much smoother recovery than most people. My

heart goes out to our Judy, who has battled rejection

and had a tough go of it. She remains in my prayers,

as does everyone in my air family. Several months ago

I had a bronchoscopy which showed a small infection and

a mild bout of rejection, but nothing to get excited about.

I think everything I've done to this point helped me make

the informed decisions that were right for me, including

the VATS.

That's more info than you ever wanted, but I give these

updates to the gang every so often. You found a great

site here - you couldn't find a more informative, caring

bunch of people who will stand by you. My heart was

broken this week at the loss of our dear Joyce, who fought

this monster of a disease every step of the way and whose

light shone unceasingly for so many of us who loved her.

Best of luck to you as you make your choices today and

in the future which will help you to keep living for as

long as you're alive!

Hugs and blessings,

Gwynne Single-lung transplant on 4-3-08 at

UTHSC - San Fort Worth, TX