to Babs et al re. Gwynnie's routine

[Guest guest]

Babs,

Where I am right now is taking it one day at a time.

The days are pretty full with keeping up with meds,

taking my outdoor walks around the apartment

complex, doing the exercises the docs gave me -

mostly to keep up leg strength, taking a shower,

resting and pain management. That last one is my

least favorite. If anyone asks, a thoracotomy hurts.

They cut right through nerves and muscle, and saw

ribs apart. The doctors said of all heart or lung

surgeries, that it's the most painful incision you can

have, more so than for double-lung, down the middle.

But narcotics are amazing inventions. Pain hits in waves,

but I now have times when I'm relatively comfortable

for prolonged periods of time. Yeay.

When I first get up out of a chair or bed, I get a tad dizzy

and I'm sure my blood pressure drops a bit. I take it

slow. But my walks are at a pretty good clip considering

that the transplant was 2 weeks ago. Two weeks!!!!!!

Did I say two weeks!???

The kids are taking care of everything else, and I mean

everything. Well, yesterday I did clean my own bathroom

sink - big woop. But they do the cleaning, cooking, most

of the meds management, shopping, laundry, doggie

care, etc. They got our cable t.v.'s set up, phones and

computers up and running, and found this nice apartment

that is just perfect for our needs. Even the amount of

meager exercise I'm getting now has enabled me to lose

12 pounds. No moon face yet. Just a big grin. Several

friends want to come and be caregivers, but it has

evolved that my kids don't want to leave me here alone

with anyone unless one of them is here also. But I'll

still have 2 or 3 friends come for several nights to

pitch in, cook a few meals, and have a low-key visit.

I don't know what my status will be when you guys

meet here, but we'll see. You know I'd love to see you.

Tuesdays are clinic days at the transplant center. I'm also

getting a consultation with a psychiatrist due to the meds

I'm on, so someone will be in place in case I start to

go nuts. So far I've had only one episode that qualified as

a near anxiety attack, but I was also horribly constipated,

a bit nauseated from meds, very jittery, and anxious about

the move we had to make from a hotel room to our

apartment. It was tough having to move twice - once from

the hospital and then again here. At clinic they do pft's (in

the body box, without inhalers), a chest x-ray, draw labs,

and see the doctor/doctors, whom I love. Two more times

I will have to have a 3-hour IV drip of a med called Cytogam.

They check my Prograf levels (an anti-rejection drug) to see

if it needs to be adjusted, and the plan is to try to reduce my

Prednisone by 5 mg per week. That can get stalled if some-

thing else happens that necessitates having to raise it and

start over. I will also have to have more bronchoscopies at

regular intervals, but I'm not sure when the next one is.

You're knocked out for that one, which is good because it

is on a very uncomfortable table, and it makes your throat

a little sore. The one I had in the hospital was an awful

experience, but not because of the procedure... rather,

because I was due pain meds BEFORE I was wheeled down

and so, when I woke up, I was in awful pain. I was pushed

over to a corner and left there for transportation to come

get me for about an hour. I was nearly delirious. Next time

shouldn't be as bad.

Two of my chest tube sutures were left in until my first

clinic last Tuesday. It was great to get them out - didn't

hurt either. The day before I left the hospital, my main line

was removed and a minor one at the wrist. I was delighted

they left the big one at the collarbone in for so long, because

whenever I needed an IV or blood drawn, they used it instead

of sticking me again. relief. Several times I had to get three

units of Insulin due to the rise in blood sugar from meds.

Hopefully that has subsided. I also had several IV infusions

of potassium. I have a history with IPF of being a little anemic,

and that was still the case.

After surgery, I was on the ventilator for about 48 hours,

but my family was allowed in the room with me, one person

at a time, as opposed to what I was expecting. I remember

hating it, but I don't really remember it very well either. I

developed a terrible bruise and hematoma on my neck from

the vent, I guess, but it's going away steadily.

Every morning I get up at around 8:00 to log in my

weight, b.p., temp, and pulse (not sats). Yesterday

I broke my rule about NOT taking my sats and took

a peek once. I was saturating at 99% at room air at one

point. I cried. It was almost surreal, but in a good way.

I take a Reglan pill 30 min. before breakfast (and every

other meal and at bedtime) and take my voluminous

quantity of morning meds. After that I usually nap on

and off until 11-12:00. I usually shower and take another

pill, the then take a walk and do exercises. Bras are out

of the question, so I'm wearing a camisole when I get

dressed. I also do the inspiration spirometer every time

I think about it, which is many times a day. I'm usually

in the 2000-2500 ml range, but once I nearly flew off

the chair and hit 3500. My eyes were as big as saucers!

I drink a lot of water, too.

My diet restrictions are no more buffets - ever. I am on

a low fat, low carb, low sugar diet, but there are no magic

numbers I'm aiming for every day... just be sensible and

cautious. Fortunately, I like steamed vegetables and lean

meat and fish. I already drank skim milk and ate low fat

cottage cheese and stuff. I'm very glad I was already in

the habit of eating well, or this would be a lot tougher.

I can't have any lunchmeats, which means no hot dogs,

or deli turkey, which is a bummer, and I was already

allergic to shellfish. grrrrr. I'm supposed to have

protein every lunch and dinner, but it can include peanut

butter or eggbeaters. I'm only supposed to have 3 egg

yolks a week. I use a LOT of garlic powder. Most of the

other foods I avoid, like tomatoes, I was already

avoiding due to the GERD. I'm not supposed to have

canned fruits or vegetables.

So far, besides the incision, one of the things that hurt

the most was a huge sneeze the other day. Coughing is

no fun, but I don't do it often and it's getting less painful.

I still have some intermittent wheezing from the bad lung,

which they tell me will go away and is normal. I have to be

very careful about torquing my body or moving or lifting

with my left shoulder (new lung side). It can sort of freeze

up or cramp rather easily, and I'd rather avoid that! Two of

my greatest comforts are the memory foam pad that Kate

got for the bed, and my memory foam pillow. The pillow is

what I rest and sleep on against my incision, and it is so

much more comfortable than a regular pillow. Music also

helps comfort me a great deal, as do all the well wishes.

In the afternoon, I check emails, mail, rest, glance at

magazines, watch t.v. or play a game with one of the kids.

I take two more walks and repeat exercises. I get a dose

in the afternoon of Sporanox, an anti-fungal med. It

tastes kind of like Robitussin, but I only have a day or two

of it left. I can't eat for three hours around that time. After

dinner we usually watch a movie. I don't go to sleep until

between 11-midnight, but I really am getting some good

sleep in between waking up for pills at midnight and 6:30 am.

I'm working on a letter to my donor's family. I wish

my tremors weren't so wild, so my handwriting were more

legible. But if it were me, I'd rather receive a letter in shakey

scribble than one dictated or printed and signed, so I'm

determined to finish it myself even though it is very tedious.

I'm so grateful and reverent about the gift of life I've been

given. Pray for me that I'll say the right words to convey my

sorrow at their grief and my immense gratitude forever for

the generous, loving gift they have given that has allowed

me to live for however long that I would not have had. It's

already been worth it, and I would absolutely, definitely,

positively do it again. Quality of life was getting to be a real

challenge. I was torn between feeling that God has other

plans for me, and fearing that it wasn't meant to be for me

to survive until transplant. Either way, I knew I was in God's

hands. But the week before transplant, when a friend and I

went to a butterfly exhibit and a gorgeous iridescent blue

butterfly landed on my shoulder and kept its wings OPEN

for quite a while (we got a photo, which I'll try to post one

day if possible), I felt that it was a sign from God... a tap on

the shoulder to get ready for something to happen. And it

did! It makes me swell with emotion and awe.

I hope this gives you a good idea of what immediate post-

transplant is like. It's an amazing experience.

Love you guys.

Hugs and blessings,

Gwynnie 57 Transplanted UTHSC San 4-3-08