Zena and Tina from Kerry

[Guest guest]

Ladies, I'm glad to read this discussion. Before I go on...

congrats Zena to moving forward and congrats to Tina to your listing

news. I say that and I feel it's okay to say that here, but I have

to tell you that I read a post where Gwynne corrected the statement

that transplant is a cure. I read the statement on that

transplantee site posted by P. that said it maybe more

accurately stated as the only currently effective treatment for

IPF. When I was talking to Joyce the other day (I could tell her

this because I knew she would " get it " ) I said I've had the

difficult situation of trying to explain the seriousness of IPF

while walking around looking like the picture of a healthy 30

something. Literally, until August I had people at the YMCA asking

me for health and exercise tips. Now, when people ask how things

are w/ this hose up my nose and I tell them looks like transplant is

a go they say " oh, great, congrats " and I know to them they think

that is the perfect pretty picture solution and they have no idea.

They think oh, you must be thrilled when I'm scared s***less, but

it's where I am and yes I am thankful and so happy that I may have

that option. I just hate that they don't " get it " . I hate that

they don't know the fear. I hate that they don't know I'm walking

around thinking (as soon as I get the official word) that I may at

any moment have to look at my beautiful kids and wonder if I'll see

them again. I am fearful of complications, of all the effects of

the post transplant meds, of rejection, of lung collapse afterward,

of the trade off, or it not being a better quality, of death, of,

of, of... Anyway, boy talk about a side track of emotion. I really

did reply here to say I am in the place where I don't know how much

to tell my 6 year old... and the 3 year old. They've been a part of

all the doc appointments... my whole gang goes, hubby and the kids

to all the appointments. I haven't gone into much w/ my daughter

because until now there's been no point in getting ahead of myself.

I have been saying that I'm hoping to get my lungs " fixed " . I think

even telling her I'm getting new ones is too much for her because of

explaining somebody else had to die for me to get them. I'm glad

they have been so a part of everything that even me going for the

eval. wasn't a big deal... Mommy at docs is just the norm for them,

but I don't really know what all to say. Glad to hear your

discussion and that we are in the same boat w/ the same age range.

I'm sure in the end my daughter will help me. She has helped me

deal w/ the O2 immensely. She made me cry the day it was delivered

when she said I want my old Mommy back, but then she made me laugh

when we got me a cool backpack for the O2 and named it the rocket

pack and she created a cartoon character for me... I am Super " O "

and I am complete w/ a big " O " on my chest, a cape and flowing

hair... I'll have to post the pick. This little darling is my

little mini me and she becomes more and more of a help all the time

and is where I derive strength. My little man, well he is the most

unconditional love any human being could ever, ever know and gives

the best hugs and kisses. Of course I have my husband to thank for

them and everything.

I hope some of this post made sense... I'm too ugghh to even reread

it now.

My best to you ladies and thanks for your discussion and help,

Kerry

37

IPF '01

S. IN

> > >

> > >

> > > Tina,

> > >

> > > Thank you so much for the Hallmark card and the very sweet

note.

> > Thank

> > > you so much for the kind words of encouragement. From one WV

girl

> > to

> > > another....you made my day.

> > >

> > > I have been worried about you. Are you recovering from your

cold

> > (or

> > > flu)? You are so brave and I am so proud of you. Those old

hills

> > breed

> > > strong women, huh?

> > >

> > > Hugs, Joyce D.

> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary

> > Hypertension

> > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's,

etc)

> > > Rejected for Transplant 2006

> > > .....I will not forget you. Behold, I have engraved you on the

> > palm of

> > > my hands. Isaiah 49: 15-16

> > >

> >

>

[Guest guest]

Hi Kerry,

I am totally with you that people seem to think everything is ok. Before I wore the face furniture there was the assumption that all I needed to do was lose some weight and get fit! I couldn't be disabled as I didn't need a wheelchair, and I could't be that sick as I didn't look like I was knocking at deaths door! The amount of times I used to spend arguing whether or not I was entitled to a disabled parking spot And now that I'm possibly getting a transplant it's all 'brilliant - that's all your problems answered then' Mind you that's not a daft as 'how long will you have to wait for a transplant then?' like donors are created to order.

At the moment all Lili knows is that I'm hoping to have new lungs that will help make me better. I'm not really thinking ahead as I'll deal with that if I get listed. She does know that someone has to die first, but I've always been upfront about the circle of life. You live, you die. That's what happens to everyone, it's not morbid to me. The book I mentioned is really helpful. I can explain tests that I'm having done by using it. I will probably use it, and possibly some balloons, to explain things to Lili if I get listed. At 5, I can tell Lili pretty much anything, but I don't know how much she's likely to take on board, so if I'm telling her something new, I try to judge at what point she's bored and wanting to talk about/do something else. Then I'll move on. I also try not to let her see me get upset if her questions become a bit much. I don't want her thinking 'I can't ask mummy incase I upset her' I don't want her to censor herself. She does know that I get upset from time to time, but I don't want her to think that it's her fault.

The other thing is that I must make sure that Lili never assumes that she's going to be my carer. Help from time to time is one thing, but I don't want her thinking that she can't do something because she has to look after me. She likes to think that she's helping me (although at 5, sometimes it's really not help! lol) she often tells me that she'll look after me, eeeeeeeeeeeeeek!

I'm loving the image of Super O

Love Ze xx

> > > >> > > >> > > > Tina,> > > >> > > > Thank you so much for the Hallmark card and the very sweet > note.> > > Thank> > > > you so much for the kind words of encouragement. From one WV > girl> > > to> > > > another....you made my day.> > > >> > > > I have been worried about you. Are you recovering from your > cold> > > (or> > > > flu)? You are so brave and I am so proud of you. Those old > hills> > > breed> > > > strong women, huh?> > > >> > > > Hugs, Joyce D.> > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary> > > Hypertension> > > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, > etc)> > > > Rejected for Transplant 2006> > > > .....I will not forget you. Behold, I have engraved you on the> > > palm of> > > > my hands. Isaiah 49: 15-16> > > >> > >> >>

[Guest guest]

Hi Kerry,

I am totally with you that people seem to think everything is ok. Before I wore the face furniture there was the assumption that all I needed to do was lose some weight and get fit! I couldn't be disabled as I didn't need a wheelchair, and I could't be that sick as I didn't look like I was knocking at deaths door! The amount of times I used to spend arguing whether or not I was entitled to a disabled parking spot And now that I'm possibly getting a transplant it's all 'brilliant - that's all your problems answered then' Mind you that's not a daft as 'how long will you have to wait for a transplant then?' like donors are created to order.

At the moment all Lili knows is that I'm hoping to have new lungs that will help make me better. I'm not really thinking ahead as I'll deal with that if I get listed. She does know that someone has to die first, but I've always been upfront about the circle of life. You live, you die. That's what happens to everyone, it's not morbid to me. The book I mentioned is really helpful. I can explain tests that I'm having done by using it. I will probably use it, and possibly some balloons, to explain things to Lili if I get listed. At 5, I can tell Lili pretty much anything, but I don't know how much she's likely to take on board, so if I'm telling her something new, I try to judge at what point she's bored and wanting to talk about/do something else. Then I'll move on. I also try not to let her see me get upset if her questions become a bit much. I don't want her thinking 'I can't ask mummy incase I upset her' I don't want her to censor herself. She does know that I get upset from time to time, but I don't want her to think that it's her fault.

The other thing is that I must make sure that Lili never assumes that she's going to be my carer. Help from time to time is one thing, but I don't want her thinking that she can't do something because she has to look after me. She likes to think that she's helping me (although at 5, sometimes it's really not help! lol) she often tells me that she'll look after me, eeeeeeeeeeeeeek!

I'm loving the image of Super O

Love Ze xx

> > > >> > > >> > > > Tina,> > > >> > > > Thank you so much for the Hallmark card and the very sweet > note.> > > Thank> > > > you so much for the kind words of encouragement. From one WV > girl> > > to> > > > another....you made my day.> > > >> > > > I have been worried about you. Are you recovering from your > cold> > > (or> > > > flu)? You are so brave and I am so proud of you. Those old > hills> > > breed> > > > strong women, huh?> > > >> > > > Hugs, Joyce D.> > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary> > > Hypertension> > > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, > etc)> > > > Rejected for Transplant 2006> > > > .....I will not forget you. Behold, I have engraved you on the> > > palm of> > > > my hands. Isaiah 49: 15-16> > > >> > >> >>

[Guest guest]

Kerry, Honey I have a very heavy heart for you this morning. I know your babies have a hard time and I know your Mothers heart will help them through whatever you go through.  I am praying for you and our young family. I hope your Dad andsister stay with you a while. Rest as much as you can.. How many L do you use right now?Take Care of YOU. Love and Prayers, PeggyHave a God Blessed Day Ladies, I'm glad to read this discussion. Before I go on... congrats Zena to moving forward and congrats to Tina to your listing news. I say that and I feel it's okay to say that here, but I have to tell you that I read a post where Gwynne corrected the statement that transplant is a cure. I read the statement on that transplantee site posted by P. that said it maybe more accurately stated as the only currently effective treatment for IPF. When I was talking to Joyce the other day (I could tell her this because I knew she would "get it") I said I've had the difficult situation of trying to explain the seriousness of IPF while walking around looking like the picture of a healthy 30 something. Literally, until August I had people at the YMCA asking me for health and exercise tips. Now, when people ask how things are w/ this hose up my nose and I tell them looks like transplant is a go they say "oh, great, congrats" and I know to them they think that is the perfect pretty picture solution and they have no idea. They think oh, you must be thrilled when I'm scared s***less, but it's where I am and yes I am thankful and so happy that I may have that option. I just hate that they don't "get it". I hate that they don't know the fear. I hate that they don't know I'm walking around thinking (as soon as I get the official word) that I may at any moment have to look at my beautiful kids and wonder if I'll see them again. I am fearful of complications, of all the effects of the post transplant meds, of rejection, of lung collapse afterward, of the trade off, or it not being a better quality, of death, of, of, of... Anyway, boy talk about a side track of emotion. I really did reply here to say I am in the place where I don't know how much to tell my 6 year old... and the 3 year old. They've been a part of all the doc appointments... my whole gang goes, hubby and the kids to all the appointments. I haven't gone into much w/ my daughter because until now there's been no point in getting ahead of myself. I have been saying that I'm hoping to get my lungs "fixed". I think even telling her I'm getting new ones is too much for her because of explaining somebody else had to die for me to get them. I'm glad they have been so a part of everything that even me going for the eval. wasn't a big deal... Mommy at docs is just the norm for them, but I don't really know what all to say. Glad to hear your discussion and that we are in the same boat w/ the same age range. I'm sure in the end my daughter will help me. She has helped me deal w/ the O2 immensely. She made me cry the day it was delivered when she said I want my old Mommy back, but then she made me laugh when we got me a cool backpack for the O2 and named it the rocket pack and she created a cartoon character for me... I am Super "O" and I am complete w/ a big "O" on my chest, a cape and flowing hair... I'll have to post the pick. This little darling is my little mini me and she becomes more and more of a help all the time and is where I derive strength. My little man, well he is the most unconditional love any human being could ever, ever know and gives the best hugs and kisses. Of course I have my husband to thank for them and everything. I hope some of this post made sense... I'm too ugghh to even reread it now.My best to you ladies and thanks for your discussion and help,Kerry37IPF '01S. IN> > >> > >> > > Tina,> > >> > > Thank you so much for the Hallmark card and the very sweet note.> > Thank> > > you so much for the kind words of encouragement. From one WV girl> > to> > > another....you made my day.> > >> > > I have been worried about you. Are you recovering from your cold> > (or> > > flu)? You are so brave and I am so proud of you. Those old hills> > breed> > > strong women, huh?> > >> > > Hugs, Joyce D.> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary> > Hypertension> > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)> > > Rejected for Transplant 2006> > > .....I will not forget you. Behold, I have engraved you on the> > palm of> > > my hands. Isaiah 49: 15-16> > >> >>

[Guest guest]

Kerry, Honey I have a very heavy heart for you this morning. I know your babies have a hard time and I know your Mothers heart will help them through whatever you go through.  I am praying for you and our young family. I hope your Dad andsister stay with you a while. Rest as much as you can.. How many L do you use right now?Take Care of YOU. Love and Prayers, PeggyHave a God Blessed Day Ladies, I'm glad to read this discussion. Before I go on... congrats Zena to moving forward and congrats to Tina to your listing news. I say that and I feel it's okay to say that here, but I have to tell you that I read a post where Gwynne corrected the statement that transplant is a cure. I read the statement on that transplantee site posted by P. that said it maybe more accurately stated as the only currently effective treatment for IPF. When I was talking to Joyce the other day (I could tell her this because I knew she would "get it") I said I've had the difficult situation of trying to explain the seriousness of IPF while walking around looking like the picture of a healthy 30 something. Literally, until August I had people at the YMCA asking me for health and exercise tips. Now, when people ask how things are w/ this hose up my nose and I tell them looks like transplant is a go they say "oh, great, congrats" and I know to them they think that is the perfect pretty picture solution and they have no idea. They think oh, you must be thrilled when I'm scared s***less, but it's where I am and yes I am thankful and so happy that I may have that option. I just hate that they don't "get it". I hate that they don't know the fear. I hate that they don't know I'm walking around thinking (as soon as I get the official word) that I may at any moment have to look at my beautiful kids and wonder if I'll see them again. I am fearful of complications, of all the effects of the post transplant meds, of rejection, of lung collapse afterward, of the trade off, or it not being a better quality, of death, of, of, of... Anyway, boy talk about a side track of emotion. I really did reply here to say I am in the place where I don't know how much to tell my 6 year old... and the 3 year old. They've been a part of all the doc appointments... my whole gang goes, hubby and the kids to all the appointments. I haven't gone into much w/ my daughter because until now there's been no point in getting ahead of myself. I have been saying that I'm hoping to get my lungs "fixed". I think even telling her I'm getting new ones is too much for her because of explaining somebody else had to die for me to get them. I'm glad they have been so a part of everything that even me going for the eval. wasn't a big deal... Mommy at docs is just the norm for them, but I don't really know what all to say. Glad to hear your discussion and that we are in the same boat w/ the same age range. I'm sure in the end my daughter will help me. She has helped me deal w/ the O2 immensely. She made me cry the day it was delivered when she said I want my old Mommy back, but then she made me laugh when we got me a cool backpack for the O2 and named it the rocket pack and she created a cartoon character for me... I am Super "O" and I am complete w/ a big "O" on my chest, a cape and flowing hair... I'll have to post the pick. This little darling is my little mini me and she becomes more and more of a help all the time and is where I derive strength. My little man, well he is the most unconditional love any human being could ever, ever know and gives the best hugs and kisses. Of course I have my husband to thank for them and everything. I hope some of this post made sense... I'm too ugghh to even reread it now.My best to you ladies and thanks for your discussion and help,Kerry37IPF '01S. IN> > >> > >> > > Tina,> > >> > > Thank you so much for the Hallmark card and the very sweet note.> > Thank> > > you so much for the kind words of encouragement. From one WV girl> > to> > > another....you made my day.> > >> > > I have been worried about you. Are you recovering from your cold> > (or> > > flu)? You are so brave and I am so proud of you. Those old hills> > breed> > > strong women, huh?> > >> > > Hugs, Joyce D.> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary> > Hypertension> > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)> > > Rejected for Transplant 2006> > > .....I will not forget you. Behold, I have engraved you on the> > palm of> > > my hands. Isaiah 49: 15-16> > >> >>

[Guest guest]

Hi Kerry, My name is Terry and I'm pretty new to all this. But I have known people who have had transplants of different body parts and wouldn't change the decision for the world. I don't even know if I qualify yet, so I have no words of wisdom. I just want you to know my prayers are with you and your family. Hugs, Terry Terry Pennisi 11/07 IPF NevadaPeggy wrote: Kerry, Honey I have a very heavy heart for you this morning. I know your babies have a

hard time and I know your Mothers heart will help them through whatever you go through. I am praying for you and our young family. I hope your Dad and sister stay with you a while. Rest as much as you can.. How many L do you use right now? Take Care of YOU. Love and Prayers, Peggy Have a God Blessed Day Ladies, I'm glad to read this discussion. Before I go on... congrats Zena to moving forward and congrats to Tina to your listing news. I say that and I feel it's okay to say that here, but I have to tell you that I read a post where Gwynne corrected the statement that transplant is a cure. I read the statement on that transplantee site posted by P. that said it maybe more accurately stated as the only currently effective treatment for IPF. When I was talking to Joyce the other day (I could tell her this because I knew she would "get it") I said I've had the difficult situation of trying to explain the seriousness of IPF while walking around looking like the picture of a healthy 30 something. Literally, until August I had people at the YMCA asking me for health and exercise tips. Now, when people ask how things are w/ this hose up my nose and I tell them looks like transplant is a go they say "oh, great, congrats" and I know to them they think that is the perfect

pretty picture solution and they have no idea. They think oh, you must be thrilled when I'm scared s***less, but it's where I am and yes I am thankful and so happy that I may have that option. I just hate that they don't "get it". I hate that they don't know the fear. I hate that they don't know I'm walking around thinking (as soon as I get the official word) that I may at any moment have to look at my beautiful kids and wonder if I'll see them again. I am fearful of complications, of all the effects of the post transplant meds, of rejection, of lung collapse afterward, of the trade off, or it not being a better quality, of death, of, of, of... Anyway, boy talk about a side track of emotion. I really did reply here to say I am in the place where I don't know how much to tell my 6 year old... and the 3 year old. They've been a part of all the doc appointments... my whole gang goes, hubby and the kids to all the appointments. I haven't gone into much w/ my daughter because until now there's been no point in getting ahead of myself. I have been saying that I'm hoping to get my lungs "fixed". I think even telling her I'm getting new ones is too much for her because of explaining somebody else had to die for me to get them. I'm glad they have been so a part of everything that even me going for the eval. wasn't a big deal... Mommy at docs is just the norm for them, but I don't really know what all to say. Glad to hear your discussion and that we are in the same boat w/ the same age range. I'm sure in the end my daughter will help me. She has helped me deal w/ the O2 immensely. She made me cry the day it was delivered when she said I

want my old Mommy back, but then she made me laugh when we got me a cool backpack for the O2 and named it the rocket pack and she created a cartoon character for me... I am Super "O" and I am complete w/ a big "O" on my chest, a cape and flowing hair... I'll have to post the pick. This little darling is my little mini me and she becomes more and more of a help all the time and is where I derive strength. My little man, well he is the most unconditional love any human being could ever, ever know and gives the best hugs and kisses. Of course I have my husband to thank for them and everything. I hope some of this post made sense... I'm too ugghh to even reread it now.My best to you ladies and thanks for your discussion and help,Kerry37IPF '01S. IN> > >> > >> > > Tina,> > >> > > Thank you so much for the Hallmark card and the very sweet note.> > Thank> > > you so much for the kind words of encouragement. From one WV girl> > to> > > another....you made my day.> > >> > > I have been worried about you. Are you recovering from your cold> > (or> > > flu)? You are so brave and I am so proud of you. Those old hills> > breed> > > strong women, huh?> > >> > > Hugs, Joyce D.> > > Pulmonary

Fibrosis 1997 Bronchiectasis 2004 Pulmonary> > Hypertension> > > 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)> > > Rejected for Transplant 2006> > > .....I will not forget you. Behold, I have engraved you on the> > palm of> > > my hands. Isaiah 49: 15-16> > >> >> Terry Pennisi 11/07 IPF Nevada

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