Fwd: Kerry

[Guest guest]

Dear Little Darlin Kerry, You are so blessed I just am awed by your tenacity to grab life and go every min your given . Just Wonderful. Let me see what I can do about a little breakdown. We have had so many new members that I just sit and wonder when the help will come. We have also lost a few members which is so very hard for us that become close to deal with. I don't think you knew Lou, she was a real card. never knew what she was up to and she fought every min she had. Persistent Fighter she said.. I miss her. It is so unbelievable that Joyce has been gone a year.. I miss her and still grieve for her friendship. I don't know if you remember Jon from San Tx. We lost him also he was very young. 40's. enough if that for now. Gwynne had her birthday April 2 for her single lung. doing real well. She was just in Ca. and visited with Randel who is doing amazingly we.. from Australia had some surgery and we haven't heard from her for a while.. good thing I don't have her phone number..LOL Beth is now our official moderator and since she is a nurse she is a huge help to us. Our Wonderful Sweet Smart Leanne doesn't have time to get on the board much anymore. Her nick name is LO-Jack so we can keep up with her. Bruce is doing well. He and have bought a home together and are happy. Randell is just sweet as sugar and is holding her own. She is finally off prednisone after three years. You know I am happy for her. I can just wish I were in Ca. with her to walk on the beach.. You know my yellow poka-dot bikini would be marvelous.. lol.I know I have left out a BUNCH but want to get this off to you in hopes you get to read it before you take off runnin.Kerry I think of you so often and always mention your name to My Heavenly Father for a complete full happy healthy life. 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." 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,

I knew you could do it. I'm home checking in while I shove some food in quickly

before I have to go pick Kami up from school. I went for a good bike ride this

morning. My knees are hurting, makes me wonder if the prednisone or one of my

oh, soooo many meds are affecting my joints. After riding I picked Kurt up from

preschool (yes, his second year of preschool... poor thing you know he's a

December birthday so no Kindergarten til next year) and we went to the bike

store to look at bikes. I might suck it up and by myself a new bike because I

really am liking it, more than I ever imagined and really my KMart purchased

Huffy from about 12 years ago may not be up to all this.

It does seem like there are a ton of newbies and still all the same old problems

and questions... thank goodness this place exists for them to find answers and

support. I owes so much to this group.

I do remember Lou... never knew what to expect from that wild one, I'm so

sorry to hear she's gone and I am even more blown away by Jon. Lucian and I

were talking about him the last time we got together. I brought out some of the

newsletters and we were speaking of everyone on the Chattanooga trip. Jane,

please forgive but that day your name eluded us. Of course Lucian got to meet

you Peggy, , Jane and we were speaking of Jon and Terri and how he had just

started on oxygen at that time. I don't remember all the complications now, I

remember he was struggling, but I am absolutely shocked and very saddened to

read of his passing.

I was wondering how Gwynne was doing, figured I'd do a search for posts from her

when I had some time. I know Lucian had spoken w/ and he said she was

doing well. Bruce and bought a place, does that mean they are back

together... no more of the just best friend stuff? Well, well, congrats Bruce.

I know Leanne is on the go and thank goodness MB keeps up w/ her good work here

and taking care of herself.

How are you? I know right before my transplant you and I had the same diffusion

and were about on the same O2 level. You stable at that same level? You

cooking any wonderful country meals... you and Joyce used to make me so hungry!

Speaking of meals, I hope can cook because Bruce's old diet of meals out

of a can used to make me lose my appetite.

Well, time's up... off I go,

Love, Ker

>

> 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

So glad to hear from you. Now a couple of corrections. First, and

I are leasing a place together. Not back together in the way you hint

but we are family and close and will always be. The house is great as we

have our separate wings and even two living areas but we also have

companionship and can enjoy each other.

As to cooking, I'd have you know I'm the only cook here. I still use

canned vegetables sometimes, grill meats, sometimes frozen broccoli,

sometimes bake potatoes, you never know what. But, doesn't cook

so any meals here I prepare. Well, except she does make good salads.

It's so great also to hear of you talking to Lucian. I really do believe

that you've been of tremendous friendship and value to him as you were

to Joyce. I just think the strength of knowing others who do understand

helps the caregiver as well as the patient.

Lou was the same Lou to the end. She has hospice in and loved

the aide, had her little dog, and I think had as peaceful a journey as

possible.

Jon struggled greatly. He was in the Pirfenidone trial but his bone

marrow dropped dramatically and then from that other issues started

surfacing. He did get in some nice traveling with Teri before his

condition worsened. As I recall he had several chemo treatments without

success. At the end he did have complications and go to ER and was

admitted. Nothing easy and Teri and the kids still are struggling to

deal with their loss. She and Carla and I'm not sure who else are doing

some traveling and last I knew were in the Northwest.

Gwynne hasn't posted for some time, but the last I knew was still doing

well. In fact, you just motivated me to email her and ask.

> >

> > 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

> >

>