Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Tom-Kim-Meg Oh yeah. The decision to have a lung transplant is not an easy one by any stretch of the imagination. My understanding is you are trading one thing for another. I fought the decsion and still fight it. I had a friend who had a lot of other issues with her pulmonary fibrosis and wasn't a candidate and was almost (I say almost) angry with me because I possibly am a candidate. Sometimes I kind of feel bad, because I know there are a lot of people out there and on this board that are not a candidate and that makes me very sad. I had a good friend, Mike (who I miss so much) who died waiting for a lung transplant and he told me to "at least have it as an option". You can always say no. It is major surgery. The timing is hard. They want you sick enough but not too sick as to be able to survive the surgery. When exactly is that? We know the disease is going to progress, we just don't know on what timetable. I think the lung tranplant question is a personal one. Let us know what you decide. Leanne uip 1/03Tom - Kim - Meg wrote: do you or anyone else have thoughts on getting approved to be put on the transplant list but not sure if you should go on the list - Tom has been thru all the testing & should know w/in a week or so if he can go on the list - then we need to decide if he should be put on it - he's not doing bad now but of course would like to be able to do more & not be on oxygen (like I'm sure everyone else would also like) - out Dr @ the Mayo has talked w/us several times & they've told us about the possible negative things - so just wondering if anyone else has went thru the testing & decided to wait & just go back for check-ups every few months?? Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 thanks for the input - we actually got the call today that he qualifies but he is "too" healthy right now so would be at the bottom of the list - so we may think about just going for check-ups every few months until his condition changes or we just decide to go on the list. Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Congrats on being listed or almost. Doesn't it just make ya crazy to be so close. They want you in top shape but make you wait until your so sick you can't walk..makes no since to me. All the best to y'all. I will be praying for strength for all of you. Love and Prayers, Peggy 9/04 ipf Florida thanks for the input - we actually got the call today that he qualifies but he is " too " healthy right now so would be at the bottom of the list - so we may think about just going for check-ups every few months until his condition changes or we just decide to go on the list. Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers <http://answers.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzOTY1NDUxMDMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx> . Cheap Talk? Check out <http://us.rd.yahoo.com/mail_us/taglines/postman8/*http://us.rd.yahoo.com/evt=39663/*http://voice.yahoo.com> Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Kim/Leanne/Anyone What is too healthy? Do you have to be down to some % Total Lung Capacity, some specific saturation w/ or w/out oxygen, what is the cutoff line for too healthy vs. transplant? Thanks, Kerry IPF 2001Tom - Kim - Meg wrote: thanks for the input - we actually got the call today that he qualifies but he is "too" healthy right now so would be at the bottom of the list - so we may think about just going for check-ups every few months until his condition changes or we just decide to go on the list. Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Your body has to be healthy enough to withstand the transplant and pull you through. Your lungs have to be very bad--i don't know what very bad is. Pulmonary hypertension is one of the deciding factors. Low sats are another--like in the 70's when on o2. pink joyce Kerry Geron wrote: Kim/Leanne/Anyone What is too healthy? Do you have to be down to some % Total Lung Capacity, some specific saturation w/ or w/out oxygen, what is the cutoff line for too healthy vs. transplant? Thanks, Kerry IPF 2001Tom - Kim - Meg <kimtomfrontiernet (DOT) net> wrote: thanks for the input - we actually got the call today that he qualifies but he is "too" healthy right now so would be at the bottom of the list - so we may think about just going for check-ups every few months until his condition changes or we just decide to go on the list. Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list. Pink Joyce IPF 3/06 Don't pick lemons. See all the new 2007 cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 http://ajrccm.atsjournals.org/cgi/content/full/158/1/335 A old site but does give some numbers http://www.unos.org/resources/frm_LAS_Calculator.asp?index=96 http://www.columbiasurgery.org/pat/lungtx/guide.html columbia site with some info http://www.newlungs.com/intro.html Patients view point P UIP 8/00 --- Geron wrote: > Kim/Leanne/Anyone > > What is too healthy? Do you have to be down to > some % Total Lung Capacity, some specific saturation > w/ or w/out oxygen, what is the cutoff line for too > healthy vs. transplant? > > Thanks, > Kerry > IPF 2001 > > Tom - Kim - Meg wrote: > thanks for the input - we actually got > the call today that he qualifies but he is " too " > healthy right now so would be at the bottom of the > list - so we may think about just going for > check-ups every few months until his condition > changes or we just decide to go on the list. > > Kim > > Re: Update on Greg > > > Dear Deb and Greg, > > As a person who is going through the lung > transplant work up, this is AWESOME news. I keep > teasing my doctors that I'm going to be the best > patient ever. In and out of the hospital. PMA, > baby! I should find out whether I'm going to be > listed in the next few weeks. Please keep us posted > on Greg's progress and of course you are in my > prayers! Thank you so much for sharing your story. > > Leanne uip 1/03 > > > > --------------------------------- > Need a quick answer? Get one in minutes from > people who know. Ask your question on Yahoo! > Answers. > > > > > > > > > --------------------------------- > Cheap Talk? Check out Yahoo! Messenger's low > PC-to-Phone call rates. > > > > > > > --------------------------------- > We won't tell. Get more on shows you hate to love > (and love to hate): Yahoo! TV's Guilty Pleasures list. ________________________________________________________________________________\ ____ Never miss an email again! Yahoo! Toolbar alerts you the instant new Mail arrives. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Hi everyone, I am waiting to get put onto the list. I was evaluated in April of 06 and was told at that time that when the time was right I would be a good candidate for a transplant but not right at that time. I was suppose to see the doctor on the 26th of February but my MIL passed away and that was the day of her funeral so the office rescheduled me. My coordinator did not want me to go throught the appointment desk because I needed to be seen before April. I have been seeing the doctor every two months now. So now my appointment is March 19th. I go on Medicare in May of this year and I guess if your on Medicare it's easier to get you onto the list (they don't have to wait to hear from your insurance company). The doctor did say that with my blood type and the antigene in my blood it could be tomorrow or it could be a few years or not at all to get the transplant. Now my lungs have progressed so there is no other option for me and without the transplant I was told it could be somewhere in the 2 year range. I don't like those odds...I want a chance at a better quality of life! I am still working part time (about 16 hours a week)and still cleaning my own house, it's just that my lungs are getting worse and there is no medication that will fix them, there are no studies I could get onto now because of the progression. I have one of two choices...transplant or die. I'd rather die trying to live! I am only 55 and my grandchildren and I are still having to much fun for it to end on my part. I need to see them grow up. Thanks for listening and hopefully you too will placed onto the transplant list. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Hi Kerry, The doctor I see on the transplant team said that UC San Diego uses lung volume to decide. When the lung volume dips to the 30's, they feel you need a lung transplant. Of course you have to have a condition that cannot be cured otherwise and you have to be healthy enough to qualify. When I was first diagnosed last year my lung volume was down to 34% and they felt I needed a transplant within the year. Since taking prednisone I am up to 68% and at this point they feel I don't need it. I am sure other transplant hospitals have other ways to determine when a transplant is needed. Kerry Geron wrote: Kim/Leanne/Anyone What is too healthy? Do you have to be down to some % Total Lung Capacity, some specific saturation w/ or w/out oxygen, what is the cutoff line for too healthy vs. transplant? Thanks, Kerry IPF 2001Tom - Kim - Meg <kimtomfrontiernet (DOT) net> wrote: thanks for the input - we actually got the call today that he qualifies but he is "too" healthy right now so would be at the bottom of the list - so we may think about just going for check-ups every few months until his condition changes or we just decide to go on the list. Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Thanks for the thoughts & prayers. Kim Re: Update on GregDear Deb and Greg,As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story.Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers <http://answers.yahoo.com/;_ylc=X3oDMTFvbGNhMGE3BF9TAzM5NjU0NTEwOARfcwMzOTY1NDUxMDMEc2VjA21haWxfdGFnbGluZQRzbGsDbWFpbF90YWcx> . Cheap Talk? Check out <http://us.rd.yahoo.com/mail_us/taglines/postman8/*http://us.rd.yahoo.com/evt=39663/*http://voice.yahoo.com> Yahoo! Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Tom is on Oxygen & is "disabled" - but he can still do things - we have to meet again w/the Transplant DR & discuss all our options now - from our phone conversation - he can be listed but would basically be at the "bottom" of the list - it is our understanding that even if at the bottom - if a transplant would be available & it matched your critia better than anyone else's you'd be called - but as far as "too" healthy - I don't know - its hard to tell how long you could be on the list??? Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. We won't tell. Get more on shows you hate to love(and love to hate): Yahoo! TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Thanks - I hope things go well for you also. Kim Re: Lung transplant question Hi everyone, I am waiting to get put onto the list. I was evaluated in April of 06 and was told at that time that when the time was right I would be a good candidate for a transplant but not right at that time. I was suppose to see the doctor on the 26th of February but my MIL passed away and that was the day of her funeral so the office rescheduled me. My coordinator did not want me to go throught the appointment desk because I needed to be seen before April. I have been seeing the doctor every two months now. So now my appointment is March 19th. I go on Medicare in May of this year and I guess if your on Medicare it's easier to get you onto the list (they don't have to wait to hear from your insurance company). The doctor did say that with my blood type and the antigene in my blood it could be tomorrow or it could be a few years or not at all to get the transplant. Now my lungs have progressed so there is no other option for me and without the transplant I was told it could be somewhere in the 2 year range. I don't like those odds...I want a chance at a better quality of life! I am still working part time (about 16 hours a week)and still cleaning my own house, it's just that my lungs are getting worse and there is no medication that will fix them, there are no studies I could get onto now because of the progression. I have one of twochoices...transplant or die. I'd rather die trying to live! I am only 55 and my grandchildren and I are still having to much fun for it to end on my part. I need to see them grow up. Thanks for listening and hopefully you too will placed onto the transplant list. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2007 Report Share Posted March 3, 2007 Leanne, Is there a list of how many on our site have had a transplant? It would be nice to know how many have survivied and for how long. It might help the rest of us to make a decision. Thanks-Leanne Storch wrote: Tom-Kim-Meg Oh yeah. The decision to have a lung transplant is not an easy one by any stretch of the imagination. My understanding is you are trading one thing for another. I fought the decsion and still fight it. I had a friend who had a lot of other issues with her pulmonary fibrosis and wasn't a candidate and was almost (I say almost) angry with me because I possibly am a candidate. Sometimes I kind of feel bad, because I know there are a lot of people out there and on this board that are not a candidate and that makes me very sad. I had a good friend, Mike (who I miss so much) who died waiting for a lung transplant and he told me to "at least have it as an option". You can always say no. It is major surgery. The timing is hard. They want you sick enough but not too sick as to be able to survive the surgery. When exactly is that? We know the disease is going to progress, we just don't know on what timetable. I think the lung tranplant question is a personal one. Let us know what you decide. Leanne uip 1/03Tom - Kim - Meg <kimtomfrontiernet (DOT) net> wrote: do you or anyone else have thoughts on getting approved to be put on the transplant list but not sure if you should go on the list - Tom has been thru all the testing & should know w/in a week or so if he can go on the list - then we need to decide if he should be put on it - he's not doing bad now but of course would like to be able to do more & not be on oxygen (like I'm sure everyone else would also like) - out Dr @ the Mayo has talked w/us several times & they've told us about the possible negative things - so just wondering if anyone else has went thru the testing & decided to wait & just go back for check-ups every few months?? Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Get your own web address. Have a HUGE year through Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Hi , We haven't had too many folks get a transplant so far. A good site to get statistics from is www.unos.org. You can manipulate data and get statistics at different hospitals. How many transplants have been done, how successful, etc. Leannedenise randel wrote: Leanne, Is there a list of how many on our site have had a transplant? It would be nice to know how many have survivied and for how long. It might help the rest of us to make a decision. Thanks-Leanne Storch wrote: Tom-Kim-Meg Oh yeah. The decision to have a lung transplant is not an easy one by any stretch of the imagination. My understanding is you are trading one thing for another. I fought the decsion and still fight it. I had a friend who had a lot of other issues with her pulmonary fibrosis and wasn't a candidate and was almost (I say almost) angry with me because I possibly am a candidate. Sometimes I kind of feel bad, because I know there are a lot of people out there and on this board that are not a candidate and that makes me very sad. I had a good friend, Mike (who I miss so much) who died waiting for a lung transplant and he told me to "at least have it as an option". You can always say no. It is major surgery. The timing is hard. They want you sick enough but not too sick as to be able to survive the surgery. When exactly is that? We know the disease is going to progress, we just don't know on what timetable. I think the lung tranplant question is a personal one. Let us know what you decide. Leanne uip 1/03Tom - Kim - Meg <kimtomfrontiernet (DOT) net> wrote: do you or anyone else have thoughts on getting approved to be put on the transplant list but not sure if you should go on the list - Tom has been thru all the testing & should know w/in a week or so if he can go on the list - then we need to decide if he should be put on it - he's not doing bad now but of course would like to be able to do more & not be on oxygen (like I'm sure everyone else would also like) - out Dr @ the Mayo has talked w/us several times & they've told us about the possible negative things - so just wondering if anyone else has went thru the testing & decided to wait & just go back for check-ups every few months?? Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Get your own web address.Have a HUGE year through Yahoo! Small Business. Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 There is also an online group called second wind for people who have already had lung transplants. pink joyceLeanne Storch wrote: Hi , We haven't had too many folks get a transplant so far. A good site to get statistics from is www.unos.org. You can manipulate data and get statistics at different hospitals. How many transplants have been done, how successful, etc. Leannedenise randel <dnsrndl> wrote: Leanne, Is there a list of how many on our site have had a transplant? It would be nice to know how many have survivied and for how long. It might help the rest of us to make a decision. Thanks-Leanne Storch wrote: Tom-Kim-Meg Oh yeah. The decision to have a lung transplant is not an easy one by any stretch of the imagination. My understanding is you are trading one thing for another. I fought the decsion and still fight it. I had a friend who had a lot of other issues with her pulmonary fibrosis and wasn't a candidate and was almost (I say almost) angry with me because I possibly am a candidate. Sometimes I kind of feel bad, because I know there are a lot of people out there and on this board that are not a candidate and that makes me very sad. I had a good friend, Mike (who I miss so much) who died waiting for a lung transplant and he told me to "at least have it as an option". You can always say no. It is major surgery. The timing is hard. They want you sick enough but not too sick as to be able to survive the surgery. When exactly is that? We know the disease is going to progress, we just don't know on what timetable. I think the lung tranplant question is a personal one. Let us know what you decide. Leanne uip 1/03Tom - Kim - Meg <kimtomfrontiernet (DOT) net> wrote: do you or anyone else have thoughts on getting approved to be put on the transplant list but not sure if you should go on the list - Tom has been thru all the testing & should know w/in a week or so if he can go on the list - then we need to decide if he should be put on it - he's not doing bad now but of course would like to be able to do more & not be on oxygen (like I'm sure everyone else would also like) - out Dr @ the Mayo has talked w/us several times & they've told us about the possible negative things - so just wondering if anyone else has went thru the testing & decided to wait & just go back for check-ups every few months?? Kim Re: Update on Greg Dear Deb and Greg, As a person who is going through the lung transplant work up, this is AWESOME news. I keep teasing my doctors that I'm going to be the best patient ever. In and out of the hospital. PMA, baby! I should find out whether I'm going to be listed in the next few weeks. Please keep us posted on Greg's progress and of course you are in my prayers! Thank you so much for sharing your story. Leanne uip 1/03 Need a quick answer? Get one in minutes from people who know. Ask your question on Yahoo! Answers. Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates. Get your own web address.Have a HUGE year through Yahoo! Small Business. Be a PS3 game guru.Get your game face on with the latest PS3 news and previews at Yahoo! Games. Pink Joyce IPF 3/06 Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
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