Re: to my friends; Gwynne update

[Guest guest]

Gwynne

Refreshed and was thinking of you today and going to email. Also, ready

to come see you whenever you say. Just email or call at your

convenience.

The guy who delivered my oxygen today (route change) was the guy who at

one time delivered to you (not the last guy you had), a bit shocked when

I told him you didn't use oxygen anymore. His mother had PF and had a

transplant when none of the hospitals had done many. She got many more

good years and this was at the time transplant odds were horrible

compared to today.

It's hard to believe you're already travelling. Oh my, Lojack, MB and I

don't stand a chance as you'll out travel us all, but you sure do

deserve it.

As to outdoors, our outdoor time is gone for a few months around here

now. I don't know which was worse when I looked at tomorrow's

forecast-the temperature or the pollen count. So, looking for indoor

walking and doing to enjoy.

>

> 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

>