Re: head swimming

October 29, 2007

Gwynne, If you come to Ca please check with UCSD. They have a higher success rate with lung transplants than UCLA. Both are great teaching centers-but checking with the better one never hurts. Both counties are desperate for nurses, so should have no problem getting a job. Before I went to UCSD, I sent my medical records to Dr. Harrelll and he did not even charge me for a consultation. UCLA charges 450.00 and UCI, 400.00. I will be keeping you in heavy prayer. God bless you- Sarcoid/PF 3/2006 California head swimming

Okay, Gang, I need to vent, if you can call it that. It's probably

more like rambling. I just know my head is swimming.

I left the house this morning at 8:00 with my sister-in-law

and father (very spry at 83, and handsome), and after a very

late lunch, I got home at 6pm. Today was spiro day, but no

DLCO, chest x-ray, labs, 6MW, and dr. visit.

My health has declined some more - actually the 6MW was fairly

dramatically worse- at one point they had me on 10L

and I dropped to 81%. Although, as you all know, you never

drop as low as you do when you're just doing regular stuff

around the house! The x-ray showed that the lung volumes are

down somewhat, the spiro was about the same, and the labs

and vitals were all pretty good. Symptomatically, I'm having

more trouble talking, walking, and am coughing more - a dry

hacking cough.

We talked as always about the dreaded "antibody issue" and

how that is a complicating factor to my getting a lung. In fact,

he told me today that even with my B+ blood type, that for sure

I'd have been transplanted at my center by now were it not for

that issue. Since I'm sicker, we talked about getting me listed

at someplace else additionally, where the donor pool is larger

than the DFW area. There are several meds that he really wishes

he could try on me, but even he can't get them. One's pirfenidone,

the other ones are leukemia drugs, I think. Anyway, he is

very supportive and eager to help me in any way possible

if getting me listed an additional place or two would increase

my chances of getting a tx quicker. He said I'm end stage but

that I've been end stage for the last year - like any other of the

plateaus, you can even out there as well, fortunately. It's

encouraging to know that the bottom line with him is to get

me a lung - not to put a feather in his cap - which I already

knew, but today strongly confirmed.

Peggy,

I know you can't fathom my trecking off to California, if we

get to that reality, on my own. My kids & family would be able to

come out, just not to MOVE there during rehab. Nor could

they likely get there in time for the surgery once I got the

call there. This whole thing is a moot point if they don't do

the same cross-match protocol there that is used here at UTSW.

My doc does INSIST on that, and I agree with him - my antigen

level at 65% is just way to high to risk hyper acute rejection

by not getting a cross-match.

I wanted you to know that one of my very dearest friends (who

lives in Macon, GA, & offered to give me a lung, but the doc

ruled it out on her end) is about to put her house on the

market after a recent divorce. Once she does that, hopefully very

soon, she needs to get a part-time job in her field as a

pediatric nurse practitioner, which she could find easily in

L.A., in order to keep her certification. Her other job would be

caring for me, and we'd fill in with other caregivers (either

ones found there or taken from here). If that doesn't fly, the

whole idea's probably out, because there's no way I'm having

that surgery without at least ONE soulmate or family there

when I wake up. No one should have to do that in my opinion.

I'd appreciate prayers that the Liza/Gwynne/ L.A. connection

comes to pass if that's what God has in mind.

Then my dad, sis-in-law and I talked about how, if I get to that

point, we have to tell my mom, who at her particular stage of

depression/dementia doesn't ask questions now about my "lung

problem" or the Helios she sees me carting around for the last

3 years. If I go on an extended leave out-of-state - say 4 to

6 months, MY need would be to have the ability, in effect, to

tell her goodbye before leaving here, just in case.

So my doc is calling UCLA and maybe another place or two

for me, and will be glad to send my file. I've got a call into a

nurse coordinator out there. I've got a contact in San Diego asking

around about types of places I could stay in LA. She's very

thorough and dependable. A friend of my dad's who was

transplanted at UCLA 6 mo. ago is writing a letter for me.

Leanne,

He does not want to do plasmaphoresis on me, and he doesn't

recommend it for me wherever I go, if I go, although that's just ME

and your situation and numbers are entirely different. Are you

doing okay, sweet friend? Tonight was the first time I checked

e-mails in three days. Oh, BTW, I've lost 6 pounds in the past

month!

Jane,

Bless you and Eddie for being our reps at the seminar. It's

great that you got to talk to your doctor and got a compliment too!

Good luck to with the new prospect.

R.,

I'm so very relieved that you're safe. I wish you didn't have to be

around all that ash, but I feel that you'll be as careful as possible.

It must feel good to be back home - maybe mixed emotions?

girl,

Good luck at the new desk job. I can see you sitting there filing

your nails! :-) How's the new car?

L.,

My heart sang when I read your posts. You are such an important

role model to me, with such a sweetness of spirit. I know you think

you're just keeping on keeping on, but you're an inspiration and I

too am honored to consider you a friend. God bless you.

Hugs and blessings,

Gwynne IPF 7/04 listed for transplant 3/07 Texas

__________________________________________________

October 30, 2007

Gwynne, Thanks for posting. You've been on my mind since chat on Thursday. I hope and pray that things will work out for you and work out fairly quickly. I don't like that you are sliding down that slippery slope, but you have a great attitude and I know you'll do what you have to do. Please keep us posted on what transpires. Liza/Gwynne/L.A. Connection it will work!!!!! Leanne uip 1/03 listed for single lung transplant 10-12-07Gwynne Keyland wrote: Okay, Gang, I need to vent, if you can call it that. It's probablymore like rambling. I just know my head is swimming.I left the house this morning at 8:00 with my sister-in-lawand father (very spry at 83, and handsome), and after a verylate lunch, I got home at 6pm. Today was spiro day, but noDLCO, chest x-ray, labs, 6MW, and dr. visit.My health has declined some more - actually the 6MW was fairlydramatically worse- at one point they had me on 10Land I dropped to 81%. Although, as you all know, you neverdrop as low as you do when you're just doing regular stuffaround the house! The x-ray showed that the lung volumes aredown somewhat, the spiro was about the same, and the labsand vitals were all pretty good. Symptomatically, I'm havingmore trouble talking, walking, and am coughing more - a dryhacking cough.We talked as always about the dreaded

"antibody issue" andhow that is a complicating factor to my getting a lung. In fact,he told me today that even with my B+ blood type, that for sureI'd have been transplanted at my center by now were it not forthat issue. Since I'm sicker, we talked about getting me listedat someplace else additionally, where the donor pool is largerthan the DFW area. There are several meds that he really wisheshe could try on me, but even he can't get them. One's pirfenidone,the other ones are leukemia drugs, I think. Anyway, he isvery supportive and eager to help me in any way possibleif getting me listed an additional place or two would increasemy chances of getting a tx quicker. He said I'm end stage butthat I've been end stage for the last year - like any other of theplateaus, you can even out there as well, fortunately. It'sencouraging to know that the bottom line with him is to getme a lung - not to put a feather in his cap

- which I alreadyknew, but today strongly confirmed.Peggy,I know you can't fathom my trecking off to California, if weget to that reality, on my own. My kids & family would be able tocome out, just not to MOVE there during rehab. Nor couldthey likely get there in time for the surgery once I got thecall there. This whole thing is a moot point if they don't dothe same cross-match protocol there that is used here at UTSW.My doc does INSIST on that, and I agree with him - my antigenlevel at 65% is just way to high to risk hyper acute rejectionby not getting a cross-match.I wanted you to know that one of my very dearest friends (wholives in Macon, GA, & offered to give me a lung, but the docruled it out on her end) is about to put her house on themarket after a recent divorce. Once she does that, hopefully verysoon, she needs to get a part-time job in her field as apediatric nurse practitioner,

which she could find easily inL.A., in order to keep her certification. Her other job would becaring for me, and we'd fill in with other caregivers (eitherones found there or taken from here). If that doesn't fly, thewhole idea's probably out, because there's no way I'm havingthat surgery without at least ONE soulmate or family therewhen I wake up. No one should have to do that in my opinion.I'd appreciate prayers that the Liza/Gwynne/L.A. connectioncomes to pass if that's what God has in mind.Then my dad, sis-in-law and I talked about how, if I get to thatpoint, we have to tell my mom, who at her particular stage ofdepression/dementia doesn't ask questions now about my "lungproblem" or the Helios she sees me carting around for the last3 years. If I go on an extended leave out-of-state - say 4 to6 months, MY need would be to have the ability, in effect, totell her goodbye before leaving here, just in

case.So my doc is calling UCLA and maybe another place or twofor me, and will be glad to send my file. I've got a call into anurse coordinator out there. I've got a contact in San Diego askingaround about types of places I could stay in LA. She's verythorough and dependable. A friend of my dad's who wastransplanted at UCLA 6 mo. ago is writing a letter for me.Leanne,He does not want to do plasmaphoresis on me, and he doesn'trecommend it for me wherever I go, if I go, although that's just MEand your situation and numbers are entirely different. Are youdoing okay, sweet friend? Tonight was the first time I checkede-mails in three days. Oh, BTW, I've lost 6 pounds in the pastmonth!Jane,Bless you and Eddie for being our reps at the seminar. It'sgreat that you got to talk to your doctor and got a compliment too!Good luck to with the new prospect. R.,I'm so very relieved that

you're safe. I wish you didn't have to bearound all that ash, but I feel that you'll be as careful as possible.It must feel good to be back home - maybe mixed emotions? girl,Good luck at the new desk job. I can see you sitting there filingyour nails! :-) How's the new car? L.,My heart sang when I read your posts. You are such an importantrole model to me, with such a sweetness of spirit. I know you thinkyou're just keeping on keeping on, but you're an inspiration and Itoo am honored to consider you a friend. God bless you.Hugs and blessings,Gwynne IPF 7/04 listed for transplant 3/07 Texas __________________________________________________

October 30, 2007

Gwynne, Thanks for posting. You've been on my mind since chat on Thursday. I hope and pray that things will work out for you and work out fairly quickly. I don't like that you are sliding down that slippery slope, but you have a great attitude and I know you'll do what you have to do. Please keep us posted on what transpires. Liza/Gwynne/L.A. Connection it will work!!!!! Leanne uip 1/03 listed for single lung transplant 10-12-07Gwynne Keyland wrote: Okay, Gang, I need to vent, if you can call it that. It's probablymore like rambling. I just know my head is swimming.I left the house this morning at 8:00 with my sister-in-lawand father (very spry at 83, and handsome), and after a verylate lunch, I got home at 6pm. Today was spiro day, but noDLCO, chest x-ray, labs, 6MW, and dr. visit.My health has declined some more - actually the 6MW was fairlydramatically worse- at one point they had me on 10Land I dropped to 81%. Although, as you all know, you neverdrop as low as you do when you're just doing regular stuffaround the house! The x-ray showed that the lung volumes aredown somewhat, the spiro was about the same, and the labsand vitals were all pretty good. Symptomatically, I'm havingmore trouble talking, walking, and am coughing more - a dryhacking cough.We talked as always about the dreaded

"antibody issue" andhow that is a complicating factor to my getting a lung. In fact,he told me today that even with my B+ blood type, that for sureI'd have been transplanted at my center by now were it not forthat issue. Since I'm sicker, we talked about getting me listedat someplace else additionally, where the donor pool is largerthan the DFW area. There are several meds that he really wisheshe could try on me, but even he can't get them. One's pirfenidone,the other ones are leukemia drugs, I think. Anyway, he isvery supportive and eager to help me in any way possibleif getting me listed an additional place or two would increasemy chances of getting a tx quicker. He said I'm end stage butthat I've been end stage for the last year - like any other of theplateaus, you can even out there as well, fortunately. It'sencouraging to know that the bottom line with him is to getme a lung - not to put a feather in his cap

- which I alreadyknew, but today strongly confirmed.Peggy,I know you can't fathom my trecking off to California, if weget to that reality, on my own. My kids & family would be able tocome out, just not to MOVE there during rehab. Nor couldthey likely get there in time for the surgery once I got thecall there. This whole thing is a moot point if they don't dothe same cross-match protocol there that is used here at UTSW.My doc does INSIST on that, and I agree with him - my antigenlevel at 65% is just way to high to risk hyper acute rejectionby not getting a cross-match.I wanted you to know that one of my very dearest friends (wholives in Macon, GA, & offered to give me a lung, but the docruled it out on her end) is about to put her house on themarket after a recent divorce. Once she does that, hopefully verysoon, she needs to get a part-time job in her field as apediatric nurse practitioner,

which she could find easily inL.A., in order to keep her certification. Her other job would becaring for me, and we'd fill in with other caregivers (eitherones found there or taken from here). If that doesn't fly, thewhole idea's probably out, because there's no way I'm havingthat surgery without at least ONE soulmate or family therewhen I wake up. No one should have to do that in my opinion.I'd appreciate prayers that the Liza/Gwynne/L.A. connectioncomes to pass if that's what God has in mind.Then my dad, sis-in-law and I talked about how, if I get to thatpoint, we have to tell my mom, who at her particular stage ofdepression/dementia doesn't ask questions now about my "lungproblem" or the Helios she sees me carting around for the last3 years. If I go on an extended leave out-of-state - say 4 to6 months, MY need would be to have the ability, in effect, totell her goodbye before leaving here, just in

case.So my doc is calling UCLA and maybe another place or twofor me, and will be glad to send my file. I've got a call into anurse coordinator out there. I've got a contact in San Diego askingaround about types of places I could stay in LA. She's verythorough and dependable. A friend of my dad's who wastransplanted at UCLA 6 mo. ago is writing a letter for me.Leanne,He does not want to do plasmaphoresis on me, and he doesn'trecommend it for me wherever I go, if I go, although that's just MEand your situation and numbers are entirely different. Are youdoing okay, sweet friend? Tonight was the first time I checkede-mails in three days. Oh, BTW, I've lost 6 pounds in the pastmonth!Jane,Bless you and Eddie for being our reps at the seminar. It'sgreat that you got to talk to your doctor and got a compliment too!Good luck to with the new prospect. R.,I'm so very relieved that

you're safe. I wish you didn't have to bearound all that ash, but I feel that you'll be as careful as possible.It must feel good to be back home - maybe mixed emotions? girl,Good luck at the new desk job. I can see you sitting there filingyour nails! :-) How's the new car? L.,My heart sang when I read your posts. You are such an importantrole model to me, with such a sweetness of spirit. I know you thinkyou're just keeping on keeping on, but you're an inspiration and Itoo am honored to consider you a friend. God bless you.Hugs and blessings,Gwynne IPF 7/04 listed for transplant 3/07 Texas __________________________________________________

October 30, 2007

Gwynne,

I admire your courage! Not many people would would relocate, but that is what you need to do. Your chances at a match will be so much greater there.

How in the world do you stay out that long. I get so tired after a couple of hours. I can push myself a little further, then it is over.

I'm glad you posted. My worry spot was itching!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Okay, Gang, I need to vent, if you can call it that. It's probably> more like rambling. I just know my head is swimming.> I left the house this morning at 8:00 with my sister-in-law> and father (very spry at 83, and handsome), and after a very> late lunch, I got home at 6pm. Today was spiro day, but no> DLCO, chest x-ray, labs, 6MW, and dr. visit.> My health has declined some more - actually the 6MW was fairly> dramatically worse- at one point they had me on 10L> and I dropped to 81%. Although, as you all know, you never> drop as low as you do when you're just doing regular stuff> around the house! The x-ray showed that the lung volumes are> down somewhat, the spiro was about the same, and the labs> and vitals were all pretty good. Symptomatically, I'm having> more trouble talking, walking, and am coughing more - a dry> hacking cough.> We talked as always about the dreaded "antibody issue" and> how that is a complicating factor to my getting a lung. In fact,> he told me today that even with my B+ blood type, that for sure> I'd have been transplanted at my center by now were it not for> that issue. Since I'm sicker, we talked about getting me listed> at someplace else additionally, where the donor pool is larger> than the DFW area. There are several meds that he really wishes> he could try on me, but even he can't get them. One's pirfenidone,> the other ones are leukemia drugs, I think. Anyway, he is> very supportive and eager to help me in any way possible> if getting me listed an additional place or two would increase> my chances of getting a tx quicker. He said I'm end stage but> that I've been end stage for the last year - like any other of the> plateaus, you can even out there as well, fortunately. It's> encouraging to know that the bottom line with him is to get> me a lung - not to put a feather in his cap - which I already> knew, but today strongly confirmed.> > Peggy,> I know you can't fathom my trecking off to California, if we> get to that reality, on my own. My kids & family would be able to> come out, just not to MOVE there during rehab. Nor could> they likely get there in time for the surgery once I got the> call there. This whole thing is a moot point if they don't do> the same cross-match protocol there that is used here at UTSW.> My doc does INSIST on that, and I agree with him - my antigen> level at 65% is just way to high to risk hyper acute rejection> by not getting a cross-match.> I wanted you to know that one of my very dearest friends (who> lives in Macon, GA, & offered to give me a lung, but the doc> ruled it out on her end) is about to put her house on the> market after a recent divorce. Once she does that, hopefully very> soon, she needs to get a part-time job in her field as a> pediatric nurse practitioner, which she could find easily in> L.A., in order to keep her certification. Her other job would be> caring for me, and we'd fill in with other caregivers (either> ones found there or taken from here). If that doesn't fly, the> whole idea's probably out, because there's no way I'm having> that surgery without at least ONE soulmate or family there> when I wake up. No one should have to do that in my opinion.> I'd appreciate prayers that the Liza/Gwynne/L.A. connection> comes to pass if that's what God has in mind.> > Then my dad, sis-in-law and I talked about how, if I get to that> point, we have to tell my mom, who at her particular stage of> depression/dementia doesn't ask questions now about my "lung> problem" or the Helios she sees me carting around for the last> 3 years. If I go on an extended leave out-of-state - say 4 to> 6 months, MY need would be to have the ability, in effect, to> tell her goodbye before leaving here, just in case.> > So my doc is calling UCLA and maybe another place or two> for me, and will be glad to send my file. I've got a call into a> nurse coordinator out there. I've got a contact in San Diego asking> around about types of places I could stay in LA. She's very> thorough and dependable. A friend of my dad's who was> transplanted at UCLA 6 mo. ago is writing a letter for me.> > Leanne,> He does not want to do plasmaphoresis on me, and he doesn't> recommend it for me wherever I go, if I go, although that's just ME> and your situation and numbers are entirely different. Are you> doing okay, sweet friend? Tonight was the first time I checked> e-mails in three days. Oh, BTW, I've lost 6 pounds in the past> month!> > Jane,> Bless you and Eddie for being our reps at the seminar. It's> great that you got to talk to your doctor and got a compliment too!> Good luck to with the new prospect.> > R.,> I'm so very relieved that you're safe. I wish you didn't have to be> around all that ash, but I feel that you'll be as careful as possible.> It must feel good to be back home - maybe mixed emotions?> > girl,> Good luck at the new desk job. I can see you sitting there filing> your nails! :-) How's the new car?> > L.,> My heart sang when I read your posts. You are such an important> role model to me, with such a sweetness of spirit. I know you think> you're just keeping on keeping on, but you're an inspiration and I> too am honored to consider you a friend. God bless you.> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

October 30, 2007

Oh yes, Leanne, you can get addicted to Ambien. I have tried to quit many times and didn't make it. I need to sleep and it helps a little. I would love to have the sweet sleep that my grandkids have. They can fall asleep in a minute....no worries!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> Okay, Gang, I need to vent, if you can call it that. It's probably> more like rambling. I just know my head is swimming.> I left the house this morning at 8:00 with my sister-in-law> and father (very spry at 83, and handsome), and after a very> late lunch, I got home at 6pm. Today was spiro day, but no> DLCO, chest x-ray, labs, 6MW, and dr. visit.> My health has declined some more - actually the 6MW was fairly> dramatically worse- at one point they had me on 10L> and I dropped to 81%. Although, as you all know, you never> drop as low as you do when you're just doing regular stuff> around the house! The x-ray showed that the lung volumes are> down somewhat, the spiro was about the same, and the labs> and vitals were all pretty good. Symptomatically, I'm having> more trouble talking, walking, and am coughing more - a dry> hacking cough.> We talked as always about the dreaded "antibody issue" and> how that is a complicating factor to my getting a lung. In fact,> he told me today that even with my B+ blood type, that for sure> I'd have been transplanted at my center by now were it not for> that issue. Since I'm sicker, we talked about getting me listed> at someplace else additionally, where the donor pool is larger> than the DFW area. There are several meds that he really wishes> he could try on me, but even he can't get them. One's pirfenidone,> the other ones are leukemia drugs, I think. Anyway, he is> very supportive and eager to help me in any way possible> if getting me listed an additional place or two would increase> my chances of getting a tx quicker. He said I'm end stage but> that I've been end stage for the last year - like any other of the> plateaus, you can even out there as well, fortunately. It's> encouraging to know that the bottom line with him is to get> me a lung - not to put a feather in his cap - which I already> knew, but today strongly confirmed.> > Peggy,> I know you can't fathom my trecking off to California, if we> get to that reality, on my own. My kids & family would be able to> come out, just not to MOVE there during rehab. Nor could> they likely get there in time for the surgery once I got the> call there. This whole thing is a moot point if they don't do> the same cross-match protocol there that is used here at UTSW.> My doc does INSIST on that, and I agree with him - my antigen> level at 65% is just way to high to risk hyper acute rejection> by not getting a cross-match.> I wanted you to know that one of my very dearest friends (who> lives in Macon, GA, & offered to give me a lung, but the doc> ruled it out on her end) is about to put her house on the> market after a recent divorce. Once she does that, hopefully very> soon, she needs to get a part-time job in her field as a> pediatric nurse practitioner, which she could find easily in> L.A., in order to keep her certification. Her other job would be> caring for me, and we'd fill in with other caregivers (either> ones found there or taken from here). If that doesn't fly, the> whole idea's probably out, because there's no way I'm having> that surgery without at least ONE soulmate or family there> when I wake up. No one should have to do that in my opinion.> I'd appreciate prayers that the Liza/Gwynne/L.A. connection> comes to pass if that's what God has in mind.> > Then my dad, sis-in-law and I talked about how, if I get to that> point, we have to tell my mom, who at her particular stage of> depression/dementia doesn't ask questions now about my "lung> problem" or the Helios she sees me carting around for the last> 3 years. If I go on an extended leave out-of-state - say 4 to> 6 months, MY need would be to have the ability, in effect, to> tell her goodbye before leaving here, just in case.> > So my doc is calling UCLA and maybe another place or two> for me, and will be glad to send my file. I've got a call into a> nurse coordinator out there. I've got a contact in San Diego asking> around about types of places I could stay in LA. She's very> thorough and dependable. A friend of my dad's who was> transplanted at UCLA 6 mo. ago is writing a letter for me.> > Leanne,> He does not want to do plasmaphoresis on me, and he doesn't> recommend it for me wherever I go, if I go, although that's just ME> and your situation and numbers are entirely different. Are you> doing okay, sweet friend? Tonight was the first time I checked> e-mails in three days. Oh, BTW, I've lost 6 pounds in the past> month!> > Jane,> Bless you and Eddie for being our reps at the seminar. It's> great that you got to talk to your doctor and got a compliment too!> Good luck to with the new prospect.> > R.,> I'm so very relieved that you're safe. I wish you didn't have to be> around all that ash, but I feel that you'll be as careful as possible.> It must feel good to be back home - maybe mixed emotions?> > girl,> Good luck at the new desk job. I can see you sitting there filing> your nails! :-) How's the new car?> > L.,> My heart sang when I read your posts. You are such an important> role model to me, with such a sweetness of spirit. I know you think> you're just keeping on keeping on, but you're an inspiration and I> too am honored to consider you a friend. God bless you.> > Hugs and blessings,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> > > > > > __________________________________________________>

October 30, 2007

Jim, I changed Doctors when I moved and needed to refill my Ambian.

He said NO it can become addicting. I simply ask and that matters to

me WHY? PLEASE.. What I need is sleep. I don't much care if I need to

take a pill at night or not..I WANT SLEEP... My new Dr. agrees. I

take a 10mg pill every night, still go through times I don't sleep

but beats the heck out of not having it.. Don't think it's gonna kill

me.

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "

Back when I had cancer I was using ambien. I'd mistakenly got the

idea, I thought a doc told me, that ambien was not a benzo. Later I

found out that it is indeed a benzodiazepine (valium family). Haven't

taken it since.........too easy to really like it !!

jim IPF 05

alaska

Joyce wrote:

Oh yes, Leanne, you can get addicted to Ambien. I have tried to quit

many times and didn't make it. I need to sleep and it helps a

little. I would love to have the sweet sleep that my grandkids

have. They can fall asleep in a minute....no worries!

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

2 COR. 12:10 ....when I am weak, then I am strong.

> Okay, Gang, I need to vent, if you can call it that. It's probably

> more like rambling. I just know my head is swimming.

> I left the house this morning at 8:00 with my sister-in-law

> and father (very spry at 83, and handsome), and after a very

> late lunch, I got home at 6pm. Today was spiro day, but no

> DLCO, chest x-ray, labs, 6MW, and dr. visit.

> My health has declined some more - actually the 6MW was fairly

> dramatically worse- at one point they had me on 10L

> and I dropped to 81%. Although, as you all know, you never

> drop as low as you do when you're just doing regular stuff

> around the house! The x-ray showed that the lung volumes are

> down somewhat, the spiro was about the same, and the labs

> and vitals were all pretty good. Symptomatically, I'm having

> more trouble talking, walking, and am coughing more - a dry

> hacking cough.

> We talked as always about the dreaded " antibody issue " and

> how that is a complicating factor to my getting a lung. In fact,

> he told me today that even with my B+ blood type, that for sure

> I'd have been transplanted at my center by now were it not for

> that issue. Since I'm sicker, we talked about getting me listed

> at someplace else additionally, where the donor pool is larger

> than the DFW area. There are several meds that he really wishes

> he could try on me, but even he can't get them. One's pirfenidone,

> the other ones are leukemia drugs, I think. Anyway, he is

> very supportive and eager to help me in any way possible

> if getting me listed an additional place or two would increase

> my chances of getting a tx quicker. He said I'm end stage but

> that I've been end stage for the last year - like any other of the

> plateaus, you can even out there as well, fortunately. It's

> encouraging to know that the bottom line with him is to get

> me a lung - not to put a feather in his cap - which I already

> knew, but today strongly confirmed.

>

> Peggy,

> I know you can't fathom my trecking off to California, if we

> get to that reality, on my own. My kids & family would be able to

> come out, just not to MOVE there during rehab. Nor could

> they likely get there in time for the surgery once I got the

> call there. This whole thing is a moot point if they don't do

> the same cross-match protocol there that is used here at UTSW.

> My doc does INSIST on that, and I agree with him - my antigen

> level at 65% is just way to high to risk hyper acute rejection

> by not getting a cross-match.

> I wanted you to know that one of my very dearest friends (who

> lives in Macon, GA, & offered to give me a lung, but the doc

> ruled it out on her end) is about to put her house on the

> market after a recent divorce. Once she does that, hopefully very

> soon, she needs to get a part-time job in her field as a

> pediatric nurse practitioner, which she could find easily in

> L.A., in order to keep her certification. Her other job would be

> caring for me, and we'd fill in with other caregivers (either

> ones found there or taken from here). If that doesn't fly, the

> whole idea's probably out, because there's no way I'm having

> that surgery without at least ONE soulmate or family there

> when I wake up. No one should have to do that in my opinion.

> I'd appreciate prayers that the Liza/Gwynne/L.A. connection

> comes to pass if that's what God has in mind.

>

> Then my dad, sis-in-law and I talked about how, if I get to that

> point, we have to tell my mom, who at her particular stage of

> depression/dementia doesn't ask questions now about my " lung

> problem " or the Helios she sees me carting around for the last

> 3 years. If I go on an extended leave out-of-state - say 4 to

> 6 months, MY need would be to have the ability, in effect, to

> tell her goodbye before leaving here, just in case.

>

> So my doc is calling UCLA and maybe another place or two

> for me, and will be glad to send my file. I've got a call into a

> nurse coordinator out there. I've got a contact in San Diego asking

> around about types of places I could stay in LA. She's very

> thorough and dependable. A friend of my dad's who was

> transplanted at UCLA 6 mo. ago is writing a letter for me.

>

> Leanne,

> He does not want to do plasmaphoresis on me, and he doesn't

> recommend it for me wherever I go, if I go, although that's just ME

> and your situation and numbers are entirely different. Are you

> doing okay, sweet friend? Tonight was the first time I checked

> e-mails in three days. Oh, BTW, I've lost 6 pounds in the past

> month!

>

> Jane,

> Bless you and Eddie for being our reps at the seminar. It's

> great that you got to talk to your doctor and got a compliment too!

> Good luck to with the new prospect.

>

> R.,

> I'm so very relieved that you're safe. I wish you didn't have to be

> around all that ash, but I feel that you'll be as careful as

possible.

> It must feel good to be back home - maybe mixed emotions?

>

> girl,

> Good luck at the new desk job. I can see you sitting there filing

> your nails! :-) How's the new car?

>

> L.,

> My heart sang when I read your posts. You are such an important

> role model to me, with such a sweetness of spirit. I know you think

> you're just keeping on keeping on, but you're an inspiration and I

> too am honored to consider you a friend. God bless you.

>

> Hugs and blessings,

> Gwynne IPF 7/04 listed for transplant 3/07 Texas

>

> __________________________________________________

>

October 30, 2007