to my friends; Gwynne update

[Guest guest]

Dearest Vicky,

You are the only one who can make the kind of decisions

about Hospice that you are facing. I hate that it has

become so difficult for you, and I hope this new step

will help make things less of a struggle. It takes so much

energy and effort just to make it through the day, I know.

You are, as always, in my prayers and I know that God has

you in his tender care. Warm hugs to you.

Sher,

I would be worried about Zoe as well. A thickening isn't

something I want to be concerned about in my daughter's

lung. I'll be holding out good thoughts for answers to this

latest problem, and that it won't be anything serious. I hope

she feels better soon. She doesn't have TB, right? What kind

of symptoms is she having? You're both in my prayers as you

wait this one out.

Is Chip still out of the hospital or do you know?

Kerry,

I really never used a mask except for at-home p.t. with an

02 cylinder. I was on too high a flow not to use a humidifier,

which you can't use with a mask. There was some other

complication in my case - maybe the liquid oxygen - but I

can't remember what it was. I was in the process of obtaining

more information about 02 canisters and masks when I got

the call. Sorry I'm not more help. Ring phone ring!!!

Bruce,

It's so good to have you back. Are you still pooped from all

that traveling?

Brett,

I think of you and pray for you every day. is precious!

,

How are your spirits holding up? I think of you so often. I hope

you are listening to music often, and taking good care of yourself.

Z,

What's the baby's newest trick? How's doing? How about

your vertigo?

Joyce,

Did I tell you I have to avoid the sun too? I have a floppy

hat, and sometimes wear thin gloves when I drive. Post-

transplant patients are more susceptible to skin cancers and

lymphomas, so no lounging on the beach for me either (one

of the trade-offs), and most of my walking will be indoors.

I SOOO hope your mean old rash is better. The whole concept

that it's tied into stopping the CellCept gives me the creeps.

The whole autoimmune process is so bizarre to me, and

apparently to the doctors as well. I think they don't know a

fraction of that whole picture yet, and how it's all related to

or causes other diseases

Jane,

Did 's blood work turn out okay? Maybe I'm mixed up, but

it seems like there were some medical tests she was waiting for

answers on. Have you started the STEP study yet? I apologize

(to you and others) if I'm behind here, but I've had to really

skim posts for a while.

Pals,

I just got back today from my first trip in three years (well,

except to the transplant center in San ). I drove to

Austin for two nights to see my daughter Kate and her fiance,

Chris. They wanted to show me where they're getting married

in September, which I loved. We had a nice dinner with Chris's

dad, whom I hadn't met before... a nice man and a very good

father.

Tomorrow will be another adventure, and a definite challenge.

I'm going to start shopping for mother-of-the-bride clothes.

It WILL be hot in Austin in September (it was 98 there yesterday).

I wilt easily, and this wedding will have a more casual feel to it.

That ought to make things easier, but unfortunately I dress up

better than I dress down, so this will be an interesting project.

I may have to have something made.

The biggest adventure is that on July 2 I'm actually going to

Colorado. It may be a little harder for me to breathe up there, but

both docs have okayed the trip. I can practically smell the mountain

air already. I'm so excited - I'm going with my dad and a good friend,

and I'm taking Misha. I haven't gotten to go in five years - and the

last

time I was there I was sooo sick.

The only thing newsworthy about my ongoing recovery is that I'm still

doing very well, except that I'm still having tremors. It was explained

to me that one reason I tire rather easily is that my muscles are

sort of

revved up all the time from the internal shaking. Makes sense. I've

started on a medication hoping to help with that, but I don't think

it's working. It sucks, but it's better than gasping for air. I've got

another bronchoscopy scheduled for the 26th. The ENT didn't put

in new ear tubes even though they'd both fallen out. He did deaden,

puncture, and aspirate one of my eardrums, though (ouch!), and wants

to see if my ears will stay clearer now that there isn't 15-18L of

oxygen

blasting them all the time. I'm crossing my fingers.

Peggy,

I'd really appreciate a prayer about my tremors added to your

special box if you don't mind. Sorry you're having the same blasted heat

we're getting here - not that I expect anything more humane from Texas

summers.

I'm still riding out the waves of grief for the loss of my mother, which

is something I suspect I'll be doing to some degree from now on. I do

think the fact that we had been saying goodbye in stages for the last

7 years helped prepare us for her passing. But you can only prepare so

much for the reality when it hits you in the face.

Hugs and blessings,

Gwynnie 57 Single-lung Transplant on 4-3-08 (10 weeks out)

at UTHSC San , TX Fort Worth, Texas

[Guest guest]

Gwynne, is back to her wonderful

self!!!!

The baby is fantastic...actually rolling over from back to front and

front to back!

Actually rolling across the room!!! She's 3 months and 3 weeks old!!

My vertigo is gone thanks to the specialized PT...it's amazing!

I now am dealing with very sore ribs...the doc thinks it may be stress

fractures ( thanks Prednsone)

I just came back from Xrays...I'll know on Monday.

I also have my 6 month PFT's and HRCT and 6 minute walk on Monday!!!

And my pulmonologist appointment too!

I'm doing nothing this week-end..the kids will cook for Mike on Sunday!

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:

Dearest Vicky,

You are the only one who can make the kind of decisions

about Hospice that you are facing. I hate that it has

become so difficult for you, and I hope this new step

will help make things less of a struggle. It takes so much

energy and effort just to make it through the day, I know.

You are, as always, in my prayers and I know that God has

you in his tender care. Warm hugs to you.

Sher,

I would be worried about Zoe as well. A thickening isn't

something I want to be concerned about in my daughter's

lung. I'll be holding out good thoughts for answers to this

latest problem, and that it won't be anything serious. I hope

she feels better soon. She doesn't have TB, right? What kind

of symptoms is she having? You're both in my prayers as you

wait this one out.

Is Chip still out of the hospital or do you know?

Kerry,

I really never used a mask except for at-home p.t. with an

02 cylinder. I was on too high a flow not to use a humidifier,

which you can't use with a mask. There was some other

complication in my case - maybe the liquid oxygen - but I

can't remember what it was. I was in the process of obtaining

more information about 02 canisters and masks when I got

the call. Sorry I'm not more help. Ring phone ring!!!

Bruce,

It's so good to have you back. Are you still pooped from all

that traveling?

Brett,

I think of you and pray for you every day. is precious!

,

How are your spirits holding up? I think of you so often. I hope

you are listening to music often, and taking good care of yourself.

Z,

What's the baby's newest trick? How's doing? How about

your vertigo?

Joyce,

Did I tell you I have to avoid the sun too? I have a floppy

hat, and sometimes wear thin gloves when I drive. Post-

transplant patients are more susceptible to skin cancers and

lymphomas, so no lounging on the beach for me either (one

of the trade-offs), and most of my walking will be indoors.

I SOOO hope your mean old rash is better. The whole concept

that it's tied into stopping the CellCept gives me the creeps.

The whole autoimmune process is so bizarre to me, and

apparently to the doctors as well. I think they don't know a

fraction of that whole picture yet, and how it's all related to

or causes other diseases

Jane,

Did 's blood work turn out okay? Maybe I'm mixed up, but

it seems like there were some medical tests she was waiting for

answers on. Have you started the STEP study yet? I apologize

(to you and others) if I'm behind here, but I've had to really

skim posts for a while.

Pals,

I just got back today from my first trip in three years (well,

except to the transplant center in San ). I drove to

Austin for two nights to see my daughter Kate and her fiance,

Chris. They wanted to show me where they're getting married

in September, which I loved. We had a nice dinner with Chris's

dad, whom I hadn't met before... a nice man and a very good

father.

Tomorrow will be another adventure, and a definite challenge.

I'm going to start shopping for mother-of-the-bride clothes.

It WILL be hot in Austin in September (it was 98 there yesterday).

I wilt easily, and this wedding will have a more casual feel to it.

That ought to make things easier, but unfortunately I dress up

better than I dress down, so this will be an interesting project.

I may have to have something made.

The biggest adventure is that on July 2 I'm actually going to

Colorado. It may be a little harder for me to breathe up there, but

both docs have okayed the trip. I can practically smell the mountain

air already. I'm so excited - I'm going with my dad and a good friend,

and I'm taking Misha. I haven't gotten to go in five years - and the

last

time I was there I was sooo sick.

The only thing newsworthy about my ongoing recovery is that I'm still

doing very well, except that I'm still having tremors. It was explained

to me that one reason I tire rather easily is that my muscles are

sort of

revved up all the time from the internal shaking. Makes sense. I've

started on a medication hoping to help with that, but I don't think

it's working. It sucks, but it's better than gasping for air. I've got

another bronchoscopy scheduled for the 26th. The ENT didn't put

in new ear tubes even though they'd both fallen out. He did deaden,

puncture, and aspirate one of my eardrums, though (ouch!), and wants

to see if my ears will stay clearer now that there isn't 15-18L of

oxygen

blasting them all the time. I'm crossing my fingers.

Peggy,

I'd really appreciate a prayer about my tremors added to your

special box if you don't mind. Sorry you're having the same blasted heat

we're getting here - not that I expect anything more humane from Texas

summers.

I'm still riding out the waves of grief for the loss of my mother, which

is something I suspect I'll be doing to some degree from now on. I do

think the fact that we had been saying goodbye in stages for the last

7 years helped prepare us for her passing. But you can only prepare so

much for the reality when it hits you in the face.

Hugs and blessings,

Gwynnie 57 Single-lung Transplant on 4-3-08 (10 weeks out)

at UTHSC San , TX Fort Worth, Texas

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.3.0/1501 - Release Date: 6/13/2008 6:33 AM

[Guest guest]

Gwynnie! Hi. I'm glad to see a post from you and I know your life is different in so many ways. Enjoy the traveling.

No, Zoë does not have TB. She says her lungs feel "tight" and sometimes she's sob. This is all so recent that we're only now beginning to put it all together. We hope for some news on Wed but we may have to wait for results.

Chip is out of the hospital and still looks like a very ill man. He is recovering at home. Drs. say they are amazed he survived the three surgeries in one month. Any one of them have taken lives before him.

Take care. Love ya

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

to my friends; Gwynne update

Dearest Vicky,You are the only one who can make the kind of decisionsabout Hospice that you are facing. I hate that it hasbecome so difficult for you, and I hope this new stepwill help make things less of a struggle. It takes so muchenergy and effort just to make it through the day, I know.You are, as always, in my prayers and I know that God hasyou in his tender care. Warm hugs to you.Sher,I would be worried about Zoe as well. A thickening isn'tsomething I want to be concerned about in my daughter'slung. I'll be holding out good thoughts for answers to thislatest problem, and that it won't be anything serious. I hopeshe feels better soon. She doesn't have TB, right? What kindof symptoms is she having? You're both in my prayers as youwait this one out.Is Chip still out of the hospital or do you know?Kerry,I really never used a mask except for at-home p.t. with an02 cylinder. I was on too high a flow not to use a humidifier,which you can't use with a mask. There was some othercomplication in my case - maybe the liquid oxygen - but Ican't remember what it was. I was in the process of obtainingmore information about 02 canisters and masks when I gotthe call. Sorry I'm not more help. Ring phone ring!!!Bruce,It's so good to have you back. Are you still pooped from allthat traveling?Brett,I think of you and pray for you every day. is precious!,How are your spirits holding up? I think of you so often. I hopeyou are listening to music often, and taking good care of yourself. Z,What's the baby's newest trick? How's doing? How aboutyour vertigo?Joyce,Did I tell you I have to avoid the sun too? I have a floppyhat, and sometimes wear thin gloves when I drive. Post-transplant patients are more susceptible to skin cancers andlymphomas, so no lounging on the beach for me either (oneof the trade-offs), and most of my walking will be indoors.I SOOO hope your mean old rash is better. The whole conceptthat it's tied into stopping the CellCept gives me the creeps.The whole autoimmune process is so bizarre to me, andapparently to the doctors as well. I think they don't know afraction of that whole picture yet, and how it's all related toor causes other diseasesJane,Did 's blood work turn out okay? Maybe I'm mixed up, butit seems like there were some medical tests she was waiting foranswers on. Have you started the STEP study yet? I apologize(to you and others) if I'm behind here, but I've had to reallyskim posts for a while.Pals,I just got back today from my first trip in three years (well,except to the transplant center in San ). I drove toAustin for two nights to see my daughter Kate and her fiance,Chris. They wanted to show me where they're getting marriedin September, which I loved. We had a nice dinner with Chris'sdad, whom I hadn't met before... a nice man and a very goodfather.Tomorrow will be another adventure, and a definite challenge.I'm going to start shopping for mother-of-the-bride clothes.It WILL be hot in Austin in September (it was 98 there yesterday).I wilt easily, and this wedding will have a more casual feel to it.That ought to make things easier, but unfortunately I dress upbetter than I dress down, so this will be an interesting project.I may have to have something made.The biggest adventure is that on July 2 I'm actually going toColorado. It may be a little harder for me to breathe up there, butboth docs have okayed the trip. I can practically smell the mountainair already. I'm so excited - I'm going with my dad and a good friend,and I'm taking Misha. I haven't gotten to go in five years - and the lasttime I was there I was sooo sick.The only thing newsworthy about my ongoing recovery is that I'm stilldoing very well, except that I'm still having tremors. It was explainedto me that one reason I tire rather easily is that my muscles are sort ofrevved up all the time from the internal shaking. Makes sense. I'vestarted on a medication hoping to help with that, but I don't thinkit's working. It sucks, but it's better than gasping for air. I've gotanother bronchoscopy scheduled for the 26th. The ENT didn't putin new ear tubes even though they'd both fallen out. He did deaden,puncture, and aspirate one of my eardrums, though (ouch!), and wantsto see if my ears will stay clearer now that there isn't 15-18L of oxygenblasting them all the time. I'm crossing my fingers.Peggy,I'd really appreciate a prayer about my tremors added to yourspecial box if you don't mind. Sorry you're having the same blasted heatwe're getting here - not that I expect anything more humane from Texassummers.I'm still riding out the waves of grief for the loss of my mother, whichis something I suspect I'll be doing to some degree from now on. I dothink the fact that we had been saying goodbye in stages for the last7 years helped prepare us for her passing. But you can only prepare somuch for the reality when it hits you in the face.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-08 (10 weeks out)at UTHSC San , TX Fort Worth, Texas