Re: to Babs et al re. Gwynnie's routine

April 18, 2008

Gwynne,

I started crying when I got to the big blue butterfly. I am so thankful you are doing well and so thankful for your wonderful updates. God bless you- Sarcoid/PF 3/2006 California

to Babs et al re. Gwynnie's routine

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 apartmentcomplex, doing the exercises the docs gave me -mostly to keep up leg strength, taking a shower,resting and pain management. That last one is myleast favorite. If anyone asks, a thoracotomy hurts.They cut right through nerves and muscle, and sawribs apart. The doctors said of all heart or lungsurgeries, that it's the most painful incision you canhave, 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 comfortablefor prolonged periods of time. Yeay.When I first get up out of a chair or bed, I get a tad dizzyand I'm sure my blood pressure drops a bit. I take itslow. But my walks are at a pretty good clip consideringthat the transplant was

2 weeks ago. Two weeks!!!!!!Did I say two weeks!???The kids are taking care of everything else, and I meaneverything. Well, yesterday I did clean my own bathroomsink - big woop. But they do the cleaning, cooking, mostof the meds management, shopping, laundry, doggiecare, etc. They got our cable t.v.'s set up, phones andcomputers up and running, and found this nice apartmentthat is just perfect for our needs. Even the amount ofmeager exercise I'm getting now has enabled me to lose12 pounds. No moon face yet. Just a big grin. Severalfriends want to come and be caregivers, but it hasevolved that my kids don't want to leave me here alonewith anyone unless one of them is here also. But I'llstill have 2 or 3 friends come for several nights topitch in, cook a few meals, and have a low-key visit.I don't know what my status will be when you guysmeet here, but we'll see. You know I'd love to

see you.Tuesdays are clinic days at the transplant center. I'm alsogetting a consultation with a psychiatrist due to the medsI'm on, so someone will be in place in case I start togo nuts. So far I've had only one episode that qualified asa near anxiety attack, but I was also horribly constipated,a bit nauseated from meds, very jittery, and anxious aboutthe move we had to make from a hotel room to ourapartment. It was tough having to move twice - once fromthe hospital and then again here. At clinic they do pft's (inthe body box, without inhalers), a chest x-ray, draw labs,and see the doctor/doctors, whom I love. Two more timesI will have to have a 3-hour IV drip of a med called Cytogam.They check my Prograf levels (an anti-rejection drug) to seeif it needs to be adjusted, and the plan is to try to reduce myPrednisone by 5 mg per week. That can get stalled if some-thing else happens that

necessitates having to raise it andstart over. I will also have to have more bronchoscopies atregular intervals, but I'm not sure when the next one is.You're knocked out for that one, which is good because itis on a very uncomfortable table, and it makes your throata little sore. The one I had in the hospital was an awfulexperience, but not because of the procedure... rather,because I was due pain meds BEFORE I was wheeled downand so, when I woke up, I was in awful pain. I was pushedover to a corner and left there for transportation to comeget me for about an hour. I was nearly delirious. Next timeshouldn't be as bad.Two of my chest tube sutures were left in until my firstclinic last Tuesday. It was great to get them out - didn'thurt either. The day before I left the hospital, my main linewas removed and a minor one at the wrist. I was delightedthey left the big one at the collarbone in

for so long, becausewhenever I needed an IV or blood drawn, they used it insteadof sticking me again. relief. Several times I had to get threeunits of Insulin due to the rise in blood sugar from meds.Hopefully that has subsided. I also had several IV infusionsof 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 personat a time, as opposed to what I was expecting. I rememberhating it, but I don't really remember it very well either. Ideveloped a terrible bruise and hematoma on my neck fromthe vent, I guess, but it's going away steadily.Every morning I get up at around 8:00 to log in myweight, b.p., temp, and pulse (not sats). YesterdayI broke my rule about NOT taking my sats and tooka peek once. I was saturating at 99% at room air at

onepoint. I cried. It was almost surreal, but in a good way.I take a Reglan pill 30 min. before breakfast (and everyother meal and at bedtime) and take my voluminousquantity of morning meds. After that I usually nap onand off until 11-12:00. I usually shower and take anotherpill, the then take a walk and do exercises. Bras are outof the question, so I'm wearing a camisole when I getdressed. I also do the inspiration spirometer every timeI think about it, which is many times a day. I'm usuallyin the 2000-2500 ml range, but once I nearly flew offthe 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 ona low fat, low carb, low sugar diet, but there are no magicnumbers I'm aiming for every day... just be sensible andcautious. Fortunately, I like steamed vegetables and leanmeat and fish. I already drank

skim milk and ate low fatcottage cheese and stuff. I'm very glad I was already inthe 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 alreadyallergic to shellfish. grrrrr. I'm supposed to haveprotein every lunch and dinner, but it can include peanutbutter or eggbeaters. I'm only supposed to have 3 eggyolks a week. I use a LOT of garlic powder. Most of theother foods I avoid, like tomatoes, I was alreadyavoiding due to the GERD. I'm not supposed to havecanned fruits or vegetables.So far, besides the incision, one of the things that hurtthe most was a huge sneeze the other day. Coughing isno 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 bevery careful about

torquing my body or moving or liftingwith my left shoulder (new lung side). It can sort of freezeup or cramp rather easily, and I'd rather avoid that! Two ofmy greatest comforts are the memory foam pad that Kategot for the bed, and my memory foam pillow. The pillow iswhat I rest and sleep on against my incision, and it is somuch more comfortable than a regular pillow. Music alsohelps comfort me a great deal, as do all the well wishes.In the afternoon, I check emails, mail, rest, glance atmagazines, watch t.v. or play a game with one of the kids.I take two more walks and repeat exercises. I get a dosein the afternoon of Sporanox, an anti-fungal med. Ittastes kind of like Robitussin, but I only have a day or twoof it left. I can't eat for three hours around that time. Afterdinner we usually watch a movie. I don't go to sleep untilbetween 11-midnight, but I really am getting some goodsleep

in between waking up for pills at midnight and 6:30 am.I'm working on a letter to my donor's family. I wishmy tremors weren't so wild, so my handwriting were morelegible. But if it were me, I'd rather receive a letter in shakeyscribble than one dictated or printed and signed, so I'mdetermined to finish it myself even though it is very tedious.I'm so grateful and reverent about the gift of life I've beengiven. Pray for me that I'll say the right words to convey mysorrow at their grief and my immense gratitude forever forthe generous, loving gift they have given that has allowedme to live for however long that I would not have had. It'salready been worth it, and I would absolutely, definitely,positively do it again. Quality of life was getting to be a realchallenge. I was torn between feeling that God has otherplans for me, and fearing that it wasn't meant to be for meto survive until

transplant. Either way, I knew I was in God'shands. But the week before transplant, when a friend and Iwent to a butterfly exhibit and a gorgeous iridescent bluebutterfly landed on my shoulder and kept its wings OPENfor quite a while (we got a photo, which I'll try to post oneday if possible), I felt that it was a sign from God... a tap onthe shoulder to get ready for something to happen. And itdid! 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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

April 18, 2008

Gwynne, Your posts are such a gift!!!

Two weeks...and you're giving us inspiration!!!

Love to you and your wonderful family.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

Gwynne Keyland wrote:

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

No virus found in this incoming message.

Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.1/1385 - Release Date: 4/18/2008 9:30 AM

April 19, 2008

Gwynne. WOW. Thanks for sharing your experience. I LOVE those signs

from God.

Leanne

>

> Gwynne,

> I started crying when I got to the big blue butterfly. I am so

thankful you are doing well and so thankful for your wonderful

updates. God bless you-

>

> Sarcoid/PF 3/2006 California

>

> to Babs et al re. Gwynnie's routine

>

> 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

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

April 19, 2008

Hi Gwynne, I really do look forward to reading about all of your post-transplant experiences which have inspired me and changed my mind about lung transplant. I will try to keep on exercising and losing weight, as Leanne has done. However, I am about to undergo tests on the 25th to find out if I can qualify for the STEP Trial. This is something that I could do now for IPF. LOVE & TOODLES to YOU! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Gwynne. WOW. Thanks for sharing your experience. I LOVE those signs > from God.> > Leanne> >> > Gwynne,> > I started crying when I got to the big blue butterfly. I am so > thankful you are doing well and so thankful for your wonderful > updates. God bless you-> > > > Sarcoid/PF 3/2006 California> > > > > > > > > > to Babs et al re. Gwynnie's routine> > > > 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> > > > > > > > > > > ______________________________________________________________________> ______________> > Be a better friend, newshound, and > > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> >>

April 19, 2008

Gwynne's experience

I'm going to try to give Gwynne's Rules for Being Prepared for a

transplant as I read and know some of the things she did. I'm not going

to talk at all about doctors or hospitals or having care arranged or how

to fly to San . I am going to list some of the other things I

know helped her so.

1. As much of the time as possible believe you're going to get called.

Don't sit just waiting for the phone to ring, but even when time seems

to be running out still believe. This is different than faith, which she

certainly has, because faith lets you deal whether or not you get the

transplant. Believing it is going to happen, having that mindset, keeps

you doing the things you need to as you move toward it.

2. Continue to do as much as you can toward living and getting out and

enjoying friends. Yes, you can take days off, but you can't stop going

at all. This determination will be the same you can draw on when you

have the transplant.

3. Follow a good healthy diet which will not be all that dissimilar to

the post-transplant diet. Get use to eating the way you'll need to. Oh

you don't have to go all the way. But, read her part about eating and

you don't see one thing about what she had to give up. What you see is

that its so much of what she was already eating. While I know weight is

important to the transplant success I believe there is another reason

having you within a certain weight going in is important. If you can't

control your weight before transplant, you won't be able to after. You

are going to be on prednisone and other medications working against you.

If you can't skip a slice of chocolate cake now, how will you deal with

no buffets for the rest of your life.

4. Exercise. Even if that exercise is only some mild leg exercises and

laps from the sofa to the kitchen and back or something, do it. San

sent a rehab therapist. The exercise will not only keep you in

the best possible shape but prepare you for the post-transplant

exercise.

5. Be prepared to get psychiatric and counseling help. Now, in her case

it was a different city but, still, she has the mindset to get that help

before reaching the day or point that suddenly she realizes she's

spiraled downward emotionally. There are going to be some tough times

with pain and the meds and everything else, but seeking help quickly can

help minimize their impact.

6. Build a good personal support system of family and friends. You are

going to require 24/7 support for a while. Partially its for the things

you can't do, partially in case something goes wrong. But, its also for

something as simple as meds. The doctors are scared that with the effect

of some of the meds it can become easy for you to miss one without

knowing it. Also, being with those who make you feel most comfortable

will be so helpful.

7. Don't try to think ahead through everything and all the days of the

future and obsess over all thats in store. Learn to live one day at a

time and to find as much joy as you can. I know after the last time I

saw Gwynne she continued to worsen, but the one thing during the meal I

will always remember is me commenting on how she still found quality and

pleasure in her life and her using the word " happy " when referring to

herself. See, I know there were many things she wasn't happy about.

Pain, shortness of breath, time getting shorter, but she still somehow

managed to live in the day and find happiness. The night before the

transplant she was doing the same when the phone rang with Kate and

preparing for a birthday party. Now, the location and nature of that

party changed. But I see the same now. I see her rejoicing in each day.

Now her success has still been miraculous. However, you can just see how

she's fully appreciating the good from each day. She's not dwelling on

all the things that could someday in the future happen, but she's

embracing the beautiful walks (yes, I'm sure the apartment complex is

beautiful to her) around the complex.

8. Be disciplined. Even if your day is simple, stick to what needs to be

done as much as you can. After transplant your schedule is full. Now

some of that is meds and doctors and all those things. But, look at her

schedule she just outlined. Be committed to everything the transplant

requires. When we see miracles such as Gwynne it makes it seem a whole

lot easier than it is. But it's a real commitment starting early and

continuing for life. Gwynne kept appointments at UTSW when she was

having some of her worst days. Some people miss them because of various

excuses when they are still quite able. Well, post-transplant requires a

commitment to a regimen.

None of the things above guarantee a transplant will come, but they do

guarantee that you will be in the best condition physically and mentally

you can be if it comes. They don't guarantee success after, but they do

guarantee that you'll do everything possible to achieve success.

Hope I didn't go too far in stating Gwynne's rules as I saw some of what

she did. I hope at a later point, Gwynne will perhaps write her own,

which will be much better than my effort. But the rules aren't just

simple ones on a piece of paper or in the literature they give you. It's

being fully in the moment, fully embracing all you're doing and need to

do. It's a lot of " no excuses " and more than that its building the

strength to find the beauty of each day of your life rather than dwell

on the suffering you might have.