Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Leanne, I hesitated to write to you after you made the " too healthy " announcement because I don't post much and so many others who know you better had good advice, support and comfort for you. But I can't be quiet another minute! When I first read your post I thought " wow, she's sure taking that well " . Since then you have expressed some of your feelings and I just want to send a big hug to you. To go through all the decision making as to whether you want a transplant or not. You do all the research learning about it, even though you have done this before. It is different this time because it is about you! Then you make the decision. Now you have to go through the whole screening process, social workers, financial advisors, pulmonologists, cardiologists, the " ists " go on and on. The " bloodletting " (lol) how much more can you give and do they need? And all the time the anxiety, will I " pass " ? Am I a good candidate, just imagine what it will be like without the nose hose? So many things I can't do now, to be able to do them again. So you do it all. That is what it was like for me. I felt like my whole life was under scrutiny. Everything was laid out there and as for dignity...well all those tests...whew no part of the anatomy unexplored (lol). But then! to be told you need to get in shape and you work so hard that now you're too healthy!! I'm just so sorry. I hope you don't feel guilty because you aren't jumping up and down with the good news. I believe that you (and the others here) are strong and yes, it is in God's time, not ours. But,I also think it OK that we don't always like it. I hope I haven't offended you. I just wanted to let you know I've been there. (or at least in the neighborhood) You are in my thoughts and prayers. Kathie NSIP '96, PH WA > Dear Leanne, > Wow, I can hardly imagine the onslaught of feelings > you must be having! I know you want to keep as active > as possible, and exercise helps with the depression, > but surely you didn't anticipate having to go on the > inactive list. It's tough for me to describe anyone with > IPF as " too healthy " for anything. I feel especially bad > for you since YOU were the one who wondered if you > were sick enough to list (before they listed you). It's > like they forget it's our LIVES that they're juggling. > > It's such a delicate balancing act they do with our lives, > deciding when we're sick enough to need a transplant > as our only remaining option, but strong enough to be > able to survive the surgery and the aftermath. It's enough > to drive you crazy. But I know you have a strong faith, > and you know all of it is in God's time, not ours. And > you know that we love you and are praying for you. > I'm going to try to concentrate on the fact that you're > stable, and that you have more time to remain active and > enjoy life before the next phase, which I know you'll do! > > Love you, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Kathie First we don't get offended here. But, most important, I'm so glad you wrote. All the rest of us tried to provide the right words, but I could just feel it all as you wrote it in a far more meaningful way. The key is that you've been there. Therefore, you understand like only someone who has been there can. I can care and love and support and hug and cry with and do everything else, but I can't yet truly understand where I haven't been or how I'd feel if I was there. I'm so glad you posted this message. > > Dear Leanne, > > Wow, I can hardly imagine the onslaught of feelings > > you must be having! I know you want to keep as active > > as possible, and exercise helps with the depression, > > but surely you didn't anticipate having to go on the > > inactive list. It's tough for me to describe anyone with > > IPF as " too healthy " for anything. I feel especially bad > > for you since YOU were the one who wondered if you > > were sick enough to list (before they listed you). It's > > like they forget it's our LIVES that they're juggling. > > > > It's such a delicate balancing act they do with our lives, > > deciding when we're sick enough to need a transplant > > as our only remaining option, but strong enough to be > > able to survive the surgery and the aftermath. It's enough > > to drive you crazy. But I know you have a strong faith, > > and you know all of it is in God's time, not ours. And > > you know that we love you and are praying for you. > > I'm going to try to concentrate on the fact that you're > > stable, and that you have more time to remain active and > > enjoy life before the next phase, which I know you'll do! > > > > Love you, > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them fast with Yahoo! > Search. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Thank you, Bruce. Sometimes when I get started I just can't shut up! Kathie NSIP '96 PH > > > Dear Leanne, > > > Wow, I can hardly imagine the onslaught of feelings > > > you must be having! I know you want to keep as active > > > as possible, and exercise helps with the depression, > > > but surely you didn't anticipate having to go on the > > > inactive list. It's tough for me to describe anyone with > > > IPF as " too healthy " for anything. I feel especially bad > > > for you since YOU were the one who wondered if you > > > were sick enough to list (before they listed you). It's > > > like they forget it's our LIVES that they're juggling. > > > > > > It's such a delicate balancing act they do with our lives, > > > deciding when we're sick enough to need a transplant > > > as our only remaining option, but strong enough to be > > > able to survive the surgery and the aftermath. It's enough > > > to drive you crazy. But I know you have a strong faith, > > > and you know all of it is in God's time, not ours. And > > > you know that we love you and are praying for you. > > > I'm going to try to concentrate on the fact that you're > > > stable, and that you have more time to remain active and > > > enjoy life before the next phase, which I know you'll do! > > > > > > Love you, > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > > > > --------------------------------- > > > Looking for last minute shopping deals? Find them fast with > Yahoo! > > Search. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Well, if I write a short message they worry I'm sick...lol > > > > Dear Leanne, > > > > Wow, I can hardly imagine the onslaught of feelings > > > > you must be having! I know you want to keep as active > > > > as possible, and exercise helps with the depression, > > > > but surely you didn't anticipate having to go on the > > > > inactive list. It's tough for me to describe anyone with > > > > IPF as " too healthy " for anything. I feel especially bad > > > > for you since YOU were the one who wondered if you > > > > were sick enough to list (before they listed you). It's > > > > like they forget it's our LIVES that they're juggling. > > > > > > > > It's such a delicate balancing act they do with our lives, > > > > deciding when we're sick enough to need a transplant > > > > as our only remaining option, but strong enough to be > > > > able to survive the surgery and the aftermath. It's enough > > > > to drive you crazy. But I know you have a strong faith, > > > > and you know all of it is in God's time, not ours. And > > > > you know that we love you and are praying for you. > > > > I'm going to try to concentrate on the fact that you're > > > > stable, and that you have more time to remain active and > > > > enjoy life before the next phase, which I know you'll do! > > > > > > > > Love you, > > > > Gwynne IPF 7/04 listed for transplant 3/07 Texas > > > > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > > Looking for last minute shopping deals? Find them fast with > > Yahoo! > > > Search. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Leanne, I know to some extent how you feel. This really is a good thing, a prayer answered. I, not being inside your head, can see that. You know and I know that after transplant, days are numbered. Longevity has not proven out. So, to my mind, the longer out your transplant is, the longer you get to live. But, you live inside that sick body that is so limited, now. You have had to make the life changes and plan changes. You wanted it to be over, right? Away with the tubing and puffing. Well, it seems that God has other plans. Gotta remember, God don't make mistakes. Keep remembering that he is faithful in all things. I am in a mixed state of emotion here as well. I pretty much had my mind set that it was time to relax, halt the fight, and prepare to die. Then I am sent to this new doc who is telling me that there is hope in new treatment and that transplant may still be a viable choice. My emotional self is complacent to stay where I am and just let nature take it's course. But, there is that little spark of desire left deep inside that longs for life. This is like driving along in a daydream state and doing a hydroplane. I love you, good friend. I know that you will come to terms with all of this, as will I. I think to myself.....well, at least others may learn from my journey....as they will from yours. Love and prayers, Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > Dear Leanne,> Wow, I can hardly imagine the onslaught of feelings> you must be having! I know you want to keep as active> as possible, and exercise helps with the depression,> but surely you didn't anticipate having to go on the> inactive list. It's tough for me to describe anyone with> IPF as "too healthy" for anything. I feel especially bad> for you since YOU were the one who wondered if you> were sick enough to list (before they listed you). It's> like they forget it's our LIVES that they're juggling.> > It's such a delicate balancing act they do with our lives,> deciding when we're sick enough to need a transplant> as our only remaining option, but strong enough to be> able to survive the surgery and the aftermath. It's enough> to drive you crazy. But I know you have a strong faith,> and you know all of it is in God's time, not ours. And> you know that we love you and are praying for you.> I'm going to try to concentrate on the fact that you're> stable, and that you have more time to remain active and> enjoy life before the next phase, which I know you'll do!> > Love you,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Leanne, I'm so sorry, you didn't upset me, really you didn't. I didn't really know what else to write, yes, I would love to be told that I'm too healthy for something, but I really don't begrudge someone else being told that. I can't imagine what thoughts you must have been going through, a big wayhay for being told that you're too healthy for a transplant and all that entails, but annoyance, agreivance etc for still being stuck with the PF. Personnally I'm still in a position where I don't know whether I'm viable or not yet, and I don't know how long it's going to take them to decide, so I'm in limbo of not really knowing what to get my head round for me if you see what I mean. As you had only recently had the news, although I had a load of questions I didn't want to ask them yet until I felt you'd got them sorted in your mind if that makes sense, but I wanted you to know that I had read and acknowledged your thread. Blame my English sense of humour! Love Ze xx> Dear Leanne,> Wow, I can hardly imagine the onslaught of feelings> you must be having! I know you want to keep as active> as possible, and exercise helps with the depression,> but surely you didn't anticipate having to go on the> inactive list. It's tough for me to describe anyone with> IPF as "too healthy" for anything. I feel especially bad> for you since YOU were the one who wondered if you> were sick enough to list (before they listed you). It's> like they forget it's our LIVES that they're juggling.> > It's such a delicate balancing act they do with our lives,> deciding when we're sick enough to need a transplant> as our only remaining option, but strong enough to be> able to survive the surgery and the aftermath. It's enough> to drive you crazy. But I know you have a strong faith,> and you know all of it is in God's time, not ours. And> you know that we love you and are praying for you.> I'm going to try to concentrate on the fact that you're> stable, and that you have more time to remain active and> enjoy life before the next phase, which I know you'll do!> > Love you,> Gwynne IPF 7/04 listed for transplant 3/07 Texas> > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.> Quote Link to comment Share on other sites More sharing options...
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