Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 A couple replies and I'll use Gwynne's post and her style (like so many others have copied... obviously it works). Judy - I never got around to saying YEAH to the latest greatest results and news. Sorry, your post kinda came in the middle of things w/ Joyce and well me trying to touch base w/ the group again. Anyhow, I was remiss. Congrats! I'm so glad things are on the upswing. You deserve some good news and I hope it just keeps getting better. Zena - good luck w/ the eval. Being away from home is hard. My eval. is scheduled next week and luckily my Dad is coming in town. He will take care of the kids and things here on the homefront while my husband and I travel up north for the tests. Hopefully things go smoothly for both of us. Gwynne - congrats on your double listing and I'm glad your back home recouperating. You speak what I feel about the transplant. It is what it is. I tell people the latest and they say, oh, I didn't know you were looking at that as an option. I say I wasn't. Then my diffusion plummeted and so have I and now it is my option. As I tried to relax last night as I got in bed, I told my husband (and recounted this to Joyce on the phone today) when I'm scared as the transplant reality nears or at transplant when I'm shaking in my boots, remind me that I'm afraid 20 times a day when I can't breathe. Leanne - when will they reevaluate your not current status? Is there anything scheduled w/ the transplant team you will you just reassess if you feel worse? Just wondering on that process. I didn't get over to see Joyce today like I'd hoped because it's been a bad day for me. Lots of coughing, rattling and shortness of breath. If this doesn't make sense that's because I just finished 1st grade homework and thought I had a minute or two, but now I gotta get this screaming 3 year old off my back (literally he's on my back in my desk chair and clutching round my neck... guess I'd better get up and make dinner). Kerry IPF '01 S. IN > > Zena, > Here's hoping that you'll be as comfortable as possible > during all the tests, and that you'll have good outcomes. > You might need to plan on a day to recuperate when it's > all over. I didn't have all my tests back-to-back, and I'm > much older than you, but it was quite draining. > Thank you so much for your words of encouragement. > > Hi Dawn. > Thanks for adding me to your prayers. I'll try to answer > some of your questions. I'm awaiting lungs at two > centers. Both have the same idea: if they get two viable > lungs that they could use for me, they'll use them. If > they only get one, they'll use it. In other words, I'll take > whatever I can get. There's no way of knowing how long > the wait is for a transplant, but being double-listed ought > to increase my chances of getting one sooner, plus the > one that listed me Friday only has a waiting list of 8. I've > been waiting at one center for 11 months already. I'm 56. > The studies are still too new to give much advantage to > either single or double-lung outcomes. > > Yes, a pulse oximeter is the little thingy that you put your > finger in that measures your oxygen saturation level (sats) > in the blood. The goal is to keep it at or above 90% (the top > number; the bottom number is your pulse) when exerting > yourself (some insurers put it at 88 or 89% before they'll > approve oxygen). This is usually established by doing a 6MW > (six minute walk), which is a PFT (Pulmonary Function test) > with an oximeter. Oximeters cost 2-3 hundred dollars, and > are a good way to help pace yourself if you are sob or are on > supplemental oxygen. Pacing myself is about the toughest > part of this disease. Most of us move as if we're in a hurry, > and I'm tall and have a long stride, so for me to slow WAY > down is a bummer. But it gets easier when your breathing > won't let you forget. > > Sher, > I wouldn't call my frame of mind excited. I am hopeful in > the sense that I know I probably won't live for very long > without a new lung, so I want one. I want to live. I also > know that I'm a strong person and have been through some > terrible physical ordeals, so I feel encouraged that I have > what it takes to make it through the tough parts, and I'm > not in denial about how tough it could be. I also sort of > dread the whole thing - I don't like pain - but it is what it > is. I don't like the idea of the meds' side effects either, but > that comes with the territory for me. I don't like the > fact that NONE of this is happening in Fort Worth. I have to > focus on slaying the biggest, " baddest " , most horrible, > urgently-threatening dragon and not give too much thought > to the little ones if I want to keep my sanity. > > Right now I don't jump every time the phone rings, but that > may start any day now. My trip to Dallas is about a 45-minute > drive. My flight to San (a 5.5 hr. drive - beyond the > allotted time) will necessarily be an hour flight on a small jet. > My sister-in-law will go with me, as well as my dad, probably > my brother, and then my son and daughter will either come > to Dallas or drive to S.A. from Austin (about an hour). I feel > confident of the medical teams, at peace about my aftercare > and support system (the best), and I know I'm in God's care. > In a way, no matter what happens, I'm okay with it. Of course, > that's easier to say now than when I'm in a panic and can't > breathe. I have some anxiety about the idea of not getting a > perfect lung, but I know how lucky I am to be a tx candidate > at all. I feel like God has more plans for me, so we'll see. > > Hugs and blessings, > Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Gwynne, Just wanted to say I'm thinking of you and praying that the phone rings soon, sooner, soonest! The waiting is the hardest part, I'm completely convinced. I know God has more plans for you, it ain't even close to being over my friend!! Love, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." transplant info. Zena,Here's hoping that you'll be as comfortable as possibleduring all the tests, and that you'll have good outcomes.You might need to plan on a day to recuperate when it'sall over. I didn't have all my tests back-to-back, and I'mmuch older than you, but it was quite draining.Thank you so much for your words of encouragement.Hi Dawn.Thanks for adding me to your prayers. I'll try to answersome of your questions. I'm awaiting lungs at twocenters. Both have the same idea: if they get two viablelungs that they could use for me, they'll use them. Ifthey only get one, they'll use it. In other words, I'll takewhatever I can get. There's no way of knowing how longthe wait is for a transplant, but being double-listed oughtto increase my chances of getting one sooner, plus theone that listed me Friday only has a waiting list of 8. I'vebeen waiting at one center for 11 months already. I'm 56.The studies are still too new to give much advantage toeither single or double-lung outcomes.Yes, a pulse oximeter is the little thingy that you put yourfinger in that measures your oxygen saturation level (sats)in the blood. The goal is to keep it at or above 90% (the topnumber; the bottom number is your pulse) when exertingyourself (some insurers put it at 88 or 89% before they'llapprove oxygen). This is usually established by doing a 6MW(six minute walk), which is a PFT (Pulmonary Function test)with an oximeter. Oximeters cost 2-3 hundred dollars, andare a good way to help pace yourself if you are sob or are onsupplemental oxygen. Pacing myself is about the toughestpart of this disease. Most of us move as if we're in a hurry,and I'm tall and have a long stride, so for me to slow WAYdown is a bummer. But it gets easier when your breathingwon't let you forget.Sher,I wouldn't call my frame of mind excited. I am hopeful inthe sense that I know I probably won't live for very longwithout a new lung, so I want one. I want to live. I alsoknow that I'm a strong person and have been through someterrible physical ordeals, so I feel encouraged that I havewhat it takes to make it through the tough parts, and I'mnot in denial about how tough it could be. I also sort ofdread the whole thing - I don't like pain - but it is what itis. I don't like the idea of the meds' side effects either, butthat comes with the territory for me. I don't like thefact that NONE of this is happening in Fort Worth. I have tofocus on slaying the biggest, "baddest", most horrible,urgently-threatenin g dragon and not give too much thoughtto the little ones if I want to keep my sanity.Right now I don't jump every time the phone rings, but thatmay start any day now. My trip to Dallas is about a 45-minutedrive. My flight to San (a 5.5 hr. drive - beyond theallotted time) will necessarily be an hour flight on a small jet.My sister-in-law will go with me, as well as my dad, probablymy brother, and then my son and daughter will either cometo Dallas or drive to S.A. from Austin (about an hour). I feelconfident of the medical teams, at peace about my aftercareand support system (the best), and I know I'm in God's care.In a way, no matter what happens, I'm okay with it. Of course,that's easier to say now than when I'm in a panic and can'tbreathe. I have some anxiety about the idea of not getting aperfect lung, but I know how lucky I am to be a tx candidateat all. I feel like God has more plans for me, so we'll see.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Gwynnie... I'm glad you are now down to the waiting game. Not that it's easy, but at least you know you're good to go and the testing is pretty much over. I can't help but think of Leanne. All she went through and now she's told she's "too healthy" for tx. As I said before, it's a relief family will escort you and between you, family and friends we'll slay those baddest dragons! I pray all the time, as so many of us do. Anything else seems so ineffectual. You and Misha take care of each other. BTW, Lola's ears are getting better...finally! warm hugs. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! transplant info. Zena,Here's hoping that you'll be as comfortable as possibleduring all the tests, and that you'll have good outcomes.You might need to plan on a day to recuperate when it'sall over. I didn't have all my tests back-to-back, and I'mmuch older than you, but it was quite draining.Thank you so much for your words of encouragement.Hi Dawn.Thanks for adding me to your prayers. I'll try to answersome of your questions. I'm awaiting lungs at twocenters. Both have the same idea: if they get two viablelungs that they could use for me, they'll use them. Ifthey only get one, they'll use it. In other words, I'll takewhatever I can get. There's no way of knowing how longthe wait is for a transplant, but being double-listed oughtto increase my chances of getting one sooner, plus theone that listed me Friday only has a waiting list of 8. I'vebeen waiting at one center for 11 months already. I'm 56.The studies are still too new to give much advantage toeither single or double-lung outcomes.Yes, a pulse oximeter is the little thingy that you put yourfinger in that measures your oxygen saturation level (sats)in the blood. The goal is to keep it at or above 90% (the topnumber; the bottom number is your pulse) when exertingyourself (some insurers put it at 88 or 89% before they'llapprove oxygen). This is usually established by doing a 6MW(six minute walk), which is a PFT (Pulmonary Function test)with an oximeter. Oximeters cost 2-3 hundred dollars, andare a good way to help pace yourself if you are sob or are onsupplemental oxygen. Pacing myself is about the toughestpart of this disease. Most of us move as if we're in a hurry,and I'm tall and have a long stride, so for me to slow WAYdown is a bummer. But it gets easier when your breathingwon't let you forget.Sher,I wouldn't call my frame of mind excited. I am hopeful inthe sense that I know I probably won't live for very longwithout a new lung, so I want one. I want to live. I alsoknow that I'm a strong person and have been through someterrible physical ordeals, so I feel encouraged that I havewhat it takes to make it through the tough parts, and I'mnot in denial about how tough it could be. I also sort ofdread the whole thing - I don't like pain - but it is what itis. I don't like the idea of the meds' side effects either, butthat comes with the territory for me. I don't like thefact that NONE of this is happening in Fort Worth. I have tofocus on slaying the biggest, "baddest", most horrible,urgently-threatening dragon and not give too much thoughtto the little ones if I want to keep my sanity.Right now I don't jump every time the phone rings, but thatmay start any day now. My trip to Dallas is about a 45-minutedrive. My flight to San (a 5.5 hr. drive - beyond theallotted time) will necessarily be an hour flight on a small jet.My sister-in-law will go with me, as well as my dad, probablymy brother, and then my son and daughter will either cometo Dallas or drive to S.A. from Austin (about an hour). I feelconfident of the medical teams, at peace about my aftercareand support system (the best), and I know I'm in God's care.In a way, no matter what happens, I'm okay with it. Of course,that's easier to say now than when I'm in a panic and can'tbreathe. I have some anxiety about the idea of not getting aperfect lung, but I know how lucky I am to be a tx candidateat all. I feel like God has more plans for me, so we'll see.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Well, you’re certainly brave, Gwynne (as are soooo many others here on this list….I have quickly discovered!!) Keep up those high spirits….they will get you far! Hugs, Dawn in N.B. transplant info. Zena, Here's hoping that you'll be as comfortable as possible during all the tests, and that you'll have good outcomes. You might need to plan on a day to recuperate when it's all over. I didn't have all my tests back-to-back, and I'm much older than you, but it was quite draining. Thank you so much for your words of encouragement. Hi Dawn. Thanks for adding me to your prayers. I'll try to answer some of your questions. I'm awaiting lungs at two centers. Both have the same idea: if they get two viable lungs that they could use for me, they'll use them. If they only get one, they'll use it. In other words, I'll take whatever I can get. There's no way of knowing how long the wait is for a transplant, but being double-listed ought to increase my chances of getting one sooner, plus the one that listed me Friday only has a waiting list of 8. I've been waiting at one center for 11 months already. I'm 56. The studies are still too new to give much advantage to either single or double-lung outcomes. Yes, a pulse oximeter is the little thingy that you put your finger in that measures your oxygen saturation level (sats) in the blood. The goal is to keep it at or above 90% (the top number; the bottom number is your pulse) when exerting yourself (some insurers put it at 88 or 89% before they'll approve oxygen). This is usually established by doing a 6MW (six minute walk), which is a PFT (Pulmonary Function test) with an oximeter. Oximeters cost 2-3 hundred dollars, and are a good way to help pace yourself if you are sob or are on supplemental oxygen. Pacing myself is about the toughest part of this disease. Most of us move as if we're in a hurry, and I'm tall and have a long stride, so for me to slow WAY down is a bummer. But it gets easier when your breathing won't let you forget. Sher, I wouldn't call my frame of mind excited. I am hopeful in the sense that I know I probably won't live for very long without a new lung, so I want one. I want to live. I also know that I'm a strong person and have been through some terrible physical ordeals, so I feel encouraged that I have what it takes to make it through the tough parts, and I'm not in denial about how tough it could be. I also sort of dread the whole thing - I don't like pain - but it is what it is. I don't like the idea of the meds' side effects either, but that comes with the territory for me. I don't like the fact that NONE of this is happening in Fort Worth. I have to focus on slaying the biggest, " baddest " , most horrible, urgently-threatening dragon and not give too much thought to the little ones if I want to keep my sanity. Right now I don't jump every time the phone rings, but that may start any day now. My trip to Dallas is about a 45-minute drive. My flight to San (a 5.5 hr. drive - beyond the allotted time) will necessarily be an hour flight on a small jet. My sister-in-law will go with me, as well as my dad, probably my brother, and then my son and daughter will either come to Dallas or drive to S.A. from Austin (about an hour). I feel confident of the medical teams, at peace about my aftercare and support system (the best), and I know I'm in God's care. In a way, no matter what happens, I'm okay with it. Of course, that's easier to say now than when I'm in a panic and can't breathe. I have some anxiety about the idea of not getting a perfect lung, but I know how lucky I am to be a tx candidate at all. I feel like God has more plans for me, so we'll see. Hugs and blessings, Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas Quote Link to comment Share on other sites More sharing options...
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