Re: Kerry to Bruce (and ? about search)

[Guest guest]

Kerry

The search function has been messed up. I've gotten better results a

couple of times recently. I use the advanced function. They have been

promising a new search for ages, but I see no evidence of it.

As to Gwynne, no reply yet but I'm not surprised that she might not

check email regularly. Last I knew she was so busy and active.

Soup....oh I have many cans of that and Hormel Chili....lol. Couldn't

resist.

Actually I went grocery shopping today. Pretty balanced items purchased.

> > > >

> > > > Z., MB, Peggy and Jane... thank you for being you and for

your

> > > > always incredible encouragement. I was hoping for a Peggy recap

but

> > I

> > > > guess it's a little hard to recap 9 months or so. Thanks for

> > > > supporting me in the PFF Fundraiser. I'm glad to do something to

> > > > finally give a little something back to the foundation for all

the

> > > > ways I've benefitted from this wonderful organization and we all

> > know

> > > > how important their work is. I was always so impressed by

Wally's

> > > > fundraiser and other's like him... I figure this is my easy way

out,

> > > > no work to organize a whole event myself, just participate,

spread

> > > > the word, tell my story and give people a way to actively fight

this

> > > > disease!

> > > >

> > > > Just scanning the posts I want to let you all know this place

still

> > > > feels like home.

> > > >

> > > > One strange question I get now is if I feel like I'm back to

normal.

> > > > I guess they mean like before I was ever sick. Somehow I don't

> > > > remember what that was like. I think mostly because of the way

this

> > > > disease came on over time and infiltrated my life. Not to

mention

> > > > when there is nothing to take notice of, there's nothing to

notice

> > > > right? That reason why people w/out challenges in their life

don't

> > > > appreciate what they've got. I do remember what it was like to

be

> > > > short of breath. If I do something that makes me short of breath

I

> > am

> > > > not like a " normal " healthy person and just go " oh, I'm short of

> > > > breath. " It's an instant flash back panicky moment. Another

> > > > interesting observation was when I was in the hospital for my

2nd

> > > > rejection. While there I went to their rehab and worked out. I

was

> > > > next to a woman on the treadmill w/ O2 on and seeing her

struggle

> > for

> > > > air was like the first time I saw it. I mean I'd been on O2 and

been

> > > > around other patients on O2, but for some reason that day I saw

it

> > in

> > > > a whole new light. It was so hard to see her gasping for breath.

> > That

> > > > was me, but when it is you it's just your reality and I realized

> > > > maybe for the first time that's how hard it was for people to

see me

> > > > that way. I don't know if I'm explaining it right.

> > > >

> > > > So many topics: here's my 2 cents...

> > > >

> > > > Disability is a total humiliating pain and I think they are

trying

> > to

> > > > discourage you and make you just give up, but don't give in or

back

> > > > down. Of course some have no problem, but even if you do, this

too

> > > > shall pass... give it a go most of the time it's worth it.

> > > >

> > > > I used to take NAC, took NAC Sustain by Jarrow Formulas. The

liquid

> > > > is the only " prescription " but there was no way I was going to

drink

> > > > or nebulize that nasty stuff. It was what I took recommended by

> > > > someone here and I remember that's what Joyce's doctor told her

to

> > > > take. Since all the pills are not prescription and not regulated

I

> > > > remember he told her only to take that kind which is in tablet

form,

> > > > definitely not capsule as it's least controllable.

> > > >

> > > > As far as Dyanne's transplant question single vs. double. You

will

> > > > hear as many different answers as people answering. There is a

lot

> > of

> > > > debate. I've heard arguments for both ways being better than the

> > > > other. I've heard some doctors and/or hospitals have different

> > > > philosophy's that it's better to save 2 lives than 1, I've heard

> > > > issues about having a native lung being better for rejecton or

and

> > > > issues of recovering and risk w/ surgery and bypass and on and

on. I

> > > > know that at my hospital they state that their preference is to

> > > > " provide recipients with both lungs, however situations arise

where

> > a

> > > > patient may only be able to receive one lung. " I know they said

2

> > > > right away for me because of my age, my high activity life w/

the 2

> > > > young kids, my disease (IPF) and that the damage was pretty much

> > > > equal in both lungs, which by the time of transplant were pretty

> > much

> > > > useless. I know at this same hospital though Judy got one and I

> > think

> > > > that was always the plan and then a man who had a very, very

> > > > comparable case (IPF, similar age, young child, etc.) they

planned

> > > > for 2, but during the transplant one lung was found to be not

> > viable.

> > > > They almost called off the procedure because of all kinds of

> > > > complication, but at the last minute said he had a better chance

w/

> > > > it and this little lung he got ended up kickin' butt and he's

done

> > > > very well. I have never heard that insurance had any say. I

picked

> > my

> > > > hospital based on lots of things, but in the process I found

that my

> > > > insurance did consider it a center of excellence and covered

> > > > transplant there at 100% vs. 80% at another.

> > > >

> > > > I just realized how late it's gotten... I gotta run to a pilates

> > > > class (bike ride and yoga yesterday).

> > > >

> > > > My best to you all,

> > > > Kerry

> > > >

> > >

> >

>

[Guest guest]

Kerry, I was hoping would see your post and talk a little about Gwynne. said she looks great and is doing real well. Has some of the prednisone shakes and is a little slower but said it is wonderful to breathe w/out 02. So I think she is traveling.Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Well Bruce whatever makes you both happy. As soon as I read your details about cooking I think oh, well the time of year is coming for soup, stew, chili's etc. I immediately think of a taco soup recipe where the majority of the ingredients are canned veggies, then I remember you don't like Mexican food. It sounds like you've got a good variety going on. I'm sure you enjoy having to cook for. Just prior to transplant I had gotten so tired that many days by dinnertime I was just exhausted and the last thing I wanted to do was cook. Considering my love of food and cooking that was another huge loss for me. I so love cooking and it's been wonderful doing that again, not to mention growing all my veggies and I even canned some tomatoes today because my garden has been doing so well I just can't keep up. Thank you for the additional details about Jon. I ache for Teri. Did you get in touch w/ Gwynne? When I search, regular or advanced nothing's showing up for the last several months... all I see is a prompt to fill out a survey if I'm having problems searching... can you or Beth give me the low down. I hate to ask assuming this has been discussed at length, but I can't even search to not have you repeat yourselves. I hope there's some simple fix or something I'm missing. Thanks, Kerry > > > > > > Z., MB, Peggy and Jane... thank you for being you and for your > > > always incredible encouragement. I was hoping for a Peggy recap but > I > > > guess it's a little hard to recap 9 months or so. Thanks for > > > supporting me in the PFF Fundraiser. I'm glad to do something to > > > finally give a little something back to the foundation for all the > > > ways I've benefitted from this wonderful organization and we all > know > > > how important their work is. I was always so impressed by Wally's > > > fundraiser and other's like him... I figure this is my easy way out, > > > no work to organize a whole event myself, just participate, spread > > > the word, tell my story and give people a way to actively fight this > > > disease! > > > > > > Just scanning the posts I want to let you all know this place still > > > feels like home. > > > > > > One strange question I get now is if I feel like I'm back to normal. > > > I guess they mean like before I was ever sick. Somehow I don't > > > remember what that was like. I think mostly because of the way this > > > disease came on over time and infiltrated my life. Not to mention > > > when there is nothing to take notice of, there's nothing to notice > > > right? That reason why people w/out challenges in their life don't > > > appreciate what they've got. I do remember what it was like to be > > > short of breath. If I do something that makes me short of breath I > am > > > not like a "normal" healthy person and just go "oh, I'm short of > > > breath." It's an instant flash back panicky moment. Another > > > interesting observation was when I was in the hospital for my 2nd > > > rejection. While there I went to their rehab and worked out. I was > > > next to a woman on the treadmill w/ O2 on and seeing her struggle > for > > > air was like the first time I saw it. I mean I'd been on O2 and been > > > around other patients on O2, but for some reason that day I saw it > in > > > a whole new light. It was so hard to see her gasping for breath. > That > > > was me, but when it is you it's just your reality and I realized > > > maybe for the first time that's how hard it was for people to see me > > > that way. I don't know if I'm explaining it right. > > > > > > So many topics: here's my 2 cents... > > > > > > Disability is a total humiliating pain and I think they are trying > to > > > discourage you and make you just give up, but don't give in or back > > > down. Of course some have no problem, but even if you do, this too > > > shall pass... give it a go most of the time it's worth it. > > > > > > I used to take NAC, took NAC Sustain by Jarrow Formulas. The liquid > > > is the only "prescription" but there was no way I was going to drink > > > or nebulize that nasty stuff. It was what I took recommended by > > > someone here and I remember that's what Joyce's doctor told her to > > > take. Since all the pills are not prescription and not regulated I > > > remember he told her only to take that kind which is in tablet form, > > > definitely not capsule as it's least controllable. > > > > > > As far as Dyanne's transplant question single vs. double. You will > > > hear as many different answers as people answering. There is a lot > of > > > debate. I've heard arguments for both ways being better than the > > > other. I've heard some doctors and/or hospitals have different > > > philosophy's that it's better to save 2 lives than 1, I've heard > > > issues about having a native lung being better for rejecton or and > > > issues of recovering and risk w/ surgery and bypass and on and on. I > > > know that at my hospital they state that their preference is to > > > "provide recipients with both lungs, however situations arise where > a > > > patient may only be able to receive one lung." I know they said 2 > > > right away for me because of my age, my high activity life w/ the 2 > > > young kids, my disease (IPF) and that the damage was pretty much > > > equal in both lungs, which by the time of transplant were pretty > much > > > useless. I know at this same hospital though Judy got one and I > think > > > that was always the plan and then a man who had a very, very > > > comparable case (IPF, similar age, young child, etc.) they planned > > > for 2, but during the transplant one lung was found to be not > viable. > > > They almost called off the procedure because of all kinds of > > > complication, but at the last minute said he had a better chance w/ > > > it and this little lung he got ended up kickin' butt and he's done > > > very well. I have never heard that insurance had any say. I picked > my > > > hospital based on lots of things, but in the process I found that my > > > insurance did consider it a center of excellence and covered > > > transplant there at 100% vs. 80% at another. > > > > > > I just realized how late it's gotten... I gotta run to a pilates > > > class (bike ride and yoga yesterday). > > > > > > My best to you all, > > > Kerry > > > > > >

[Guest guest]

Peggy

Oh my...I did forget that she was out there and saw . She did so

much before transplant and sure not is active now. With things going

well for her kids and so much going on, I'm sure she's living her life

to the fullest.

> > > >

> > > > Z., MB, Peggy and Jane... thank you for being you and

> for your

> > > > always incredible encouragement. I was hoping for a Peggy

> recap but

> > I

> > > > guess it's a little hard to recap 9 months or so. Thanks for

> > > > supporting me in the PFF Fundraiser. I'm glad to do something

to

> > > > finally give a little something back to the foundation for all

> the

> > > > ways I've benefitted from this wonderful organization and we

all

> > know

> > > > how important their work is. I was always so impressed by

Wally's

> > > > fundraiser and other's like him... I figure this is my easy

> way out,

> > > > no work to organize a whole event myself, just participate,

> spread

> > > > the word, tell my story and give people a way to actively

> fight this

> > > > disease!

> > > >

> > > > Just scanning the posts I want to let you all know this place

> still

> > > > feels like home.

> > > >

> > > > One strange question I get now is if I feel like I'm back to

> normal.

> > > > I guess they mean like before I was ever sick. Somehow I don't

> > > > remember what that was like. I think mostly because of the way

> this

> > > > disease came on over time and infiltrated my life. Not to

mention

> > > > when there is nothing to take notice of, there's nothing to

> notice

> > > > right? That reason why people w/out challenges in their life

> don't

> > > > appreciate what they've got. I do remember what it was like to

be

> > > > short of breath. If I do something that makes me short of

> breath I

> > am

> > > > not like a " normal " healthy person and just go " oh, I'm short

of

> > > > breath. " It's an instant flash back panicky moment. Another

> > > > interesting observation was when I was in the hospital for my

2nd

> > > > rejection. While there I went to their rehab and worked out. I

> was

> > > > next to a woman on the treadmill w/ O2 on and seeing her

struggle

> > for

> > > > air was like the first time I saw it. I mean I'd been on O2

> and been

> > > > around other patients on O2, but for some reason that day I

> saw it

> > in

> > > > a whole new light. It was so hard to see her gasping for

breath.

> > That

> > > > was me, but when it is you it's just your reality and I

realized

> > > > maybe for the first time that's how hard it was for people to

> see me

> > > > that way. I don't know if I'm explaining it right.

> > > >

> > > > So many topics: here's my 2 cents...

> > > >

> > > > Disability is a total humiliating pain and I think they are

> trying

> > to

> > > > discourage you and make you just give up, but don't give in or

> back

> > > > down. Of course some have no problem, but even if you do, this

> too

> > > > shall pass... give it a go most of the time it's worth it.

> > > >

> > > > I used to take NAC, took NAC Sustain by Jarrow Formulas. The

> liquid

> > > > is the only " prescription " but there was no way I was going to

> drink

> > > > or nebulize that nasty stuff. It was what I took recommended by

> > > > someone here and I remember that's what Joyce's doctor told

> her to

> > > > take. Since all the pills are not prescription and not

> regulated I

> > > > remember he told her only to take that kind which is in tablet

> form,

> > > > definitely not capsule as it's least controllable.

> > > >

> > > > As far as Dyanne's transplant question single vs. double. You

> will

> > > > hear as many different answers as people answering. There is a

> lot

> > of

> > > > debate. I've heard arguments for both ways being better than

the

> > > > other. I've heard some doctors and/or hospitals have different

> > > > philosophy's that it's better to save 2 lives than 1, I've

heard

> > > > issues about having a native lung being better for rejecton or

> and

> > > > issues of recovering and risk w/ surgery and bypass and on and

> on. I

> > > > know that at my hospital they state that their preference is to

> > > > " provide recipients with both lungs, however situations arise

> where

> > a

> > > > patient may only be able to receive one lung. " I know they said

2

> > > > right away for me because of my age, my high activity life w/

> the 2

> > > > young kids, my disease (IPF) and that the damage was pretty

much

> > > > equal in both lungs, which by the time of transplant were

pretty

> > much

> > > > useless. I know at this same hospital though Judy got one and I

> > think

> > > > that was always the plan and then a man who had a very, very

> > > > comparable case (IPF, similar age, young child, etc.) they

> planned

> > > > for 2, but during the transplant one lung was found to be not

> > viable.

> > > > They almost called off the procedure because of all kinds of

> > > > complication, but at the last minute said he had a better

> chance w/

> > > > it and this little lung he got ended up kickin' butt and he's

> done

> > > > very well. I have never heard that insurance had any say. I

> picked

> > my

> > > > hospital based on lots of things, but in the process I found

> that my

> > > > insurance did consider it a center of excellence and covered

> > > > transplant there at 100% vs. 80% at another.

> > > >

> > > > I just realized how late it's gotten... I gotta run to a

pilates

> > > > class (bike ride and yoga yesterday).

> > > >

> > > > My best to you all,

> > > > Kerry

> > > >

> > >

> >

>

[Guest guest]

I know she is. I just smile every time I think of our "Birthday Club" A new life. but mainly breathing deeply and yawn so deep your toes curl.. AAAAAHHHHH thats livin.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy Oh my...I did forget that she was out there and saw . She did so much before transplant and sure not is active now. With things going well for her kids and so much going on, I'm sure she's living her life to the fullest. > > > > > > > > Z., MB, Peggy and Jane... thank you for being you and > for your > > > > always incredible encouragement. I was hoping for a Peggy > recap but > > I > > > > guess it's a little hard to recap 9 months or so. Thanks for > > > > supporting me in the PFF Fundraiser. I'm glad to do something to > > > > finally give a little something back to the foundation for all > the > > > > ways I've benefitted from this wonderful organization and we all > > know > > > > how important their work is. I was always so impressed by Wally's > > > > fundraiser and other's like him... I figure this is my easy > way out, > > > > no work to organize a whole event myself, just participate, > spread > > > > the word, tell my story and give people a way to actively > fight this > > > > disease! > > > > > > > > Just scanning the posts I want to let you all know this place > still > > > > feels like home. > > > > > > > > One strange question I get now is if I feel like I'm back to > normal. > > > > I guess they mean like before I was ever sick. Somehow I don't > > > > remember what that was like. I think mostly because of the way > this > > > > disease came on over time and infiltrated my life. Not to mention > > > > when there is nothing to take notice of, there's nothing to > notice > > > > right? That reason why people w/out challenges in their life > don't > > > > appreciate what they've got. I do remember what it was like to be > > > > short of breath. If I do something that makes me short of > breath I > > am > > > > not like a "normal" healthy person and just go "oh, I'm short of > > > > breath." It's an instant flash back panicky moment. Another > > > > interesting observation was when I was in the hospital for my 2nd > > > > rejection. While there I went to their rehab and worked out. I > was > > > > next to a woman on the treadmill w/ O2 on and seeing her struggle > > for > > > > air was like the first time I saw it. I mean I'd been on O2 > and been > > > > around other patients on O2, but for some reason that day I > saw it > > in > > > > a whole new light. It was so hard to see her gasping for breath. > > That > > > > was me, but when it is you it's just your reality and I realized > > > > maybe for the first time that's how hard it was for people to > see me > > > > that way. I don't know if I'm explaining it right. > > > > > > > > So many topics: here's my 2 cents... > > > > > > > > Disability is a total humiliating pain and I think they are > trying > > to > > > > discourage you and make you just give up, but don't give in or > back > > > > down. Of course some have no problem, but even if you do, this > too > > > > shall pass... give it a go most of the time it's worth it. > > > > > > > > I used to take NAC, took NAC Sustain by Jarrow Formulas. The > liquid > > > > is the only "prescription" but there was no way I was going to > drink > > > > or nebulize that nasty stuff. It was what I took recommended by > > > > someone here and I remember that's what Joyce's doctor told > her to > > > > take. Since all the pills are not prescription and not > regulated I > > > > remember he told her only to take that kind which is in tablet > form, > > > > definitely not capsule as it's least controllable. > > > > > > > > As far as Dyanne's transplant question single vs. double. You > will > > > > hear as many different answers as people answering. There is a > lot > > of > > > > debate. I've heard arguments for both ways being better than the > > > > other. I've heard some doctors and/or hospitals have different > > > > philosophy's that it's better to save 2 lives than 1, I've heard > > > > issues about having a native lung being better for rejecton or > and > > > > issues of recovering and risk w/ surgery and bypass and on and > on. I > > > > know that at my hospital they state that their preference is to > > > > "provide recipients with both lungs, however situations arise > where > > a > > > > patient may only be able to receive one lung." I know they said 2 > > > > right away for me because of my age, my high activity life w/ > the 2 > > > > young kids, my disease (IPF) and that the damage was pretty much > > > > equal in both lungs, which by the time of transplant were pretty > > much > > > > useless. I know at this same hospital though Judy got one and I > > think > > > > that was always the plan and then a man who had a very, very > > > > comparable case (IPF, similar age, young child, etc.) they > planned > > > > for 2, but during the transplant one lung was found to be not > > viable. > > > > They almost called off the procedure because of all kinds of > > > > complication, but at the last minute said he had a better > chance w/ > > > > it and this little lung he got ended up kickin' butt and he's > done > > > > very well. I have never heard that insurance had any say. I > picked > > my > > > > hospital based on lots of things, but in the process I found > that my > > > > insurance did consider it a center of excellence and covered > > > > transplant there at 100% vs. 80% at another. > > > > > > > > I just realized how late it's gotten... I gotta run to a pilates > > > > class (bike ride and yoga yesterday). > > > > > > > > My best to you all, > > > > Kerry > > > > > > > > > >