Kerry to Bruce (and ? about search)

[Guest guest]

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

> > >

> >

>