Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Joyce, Lentz is from Arizona and the other is from Minnesota - the Minnesota is the one that's listed. LeanneJoyce T Rosenberg wrote: Are there two nancy's. Is so, which one is listed for transplant? pink Leanne Storch wrote: Hi Gwynne and , I'm not listed yet.....however, I did go through the lung transplant evaluation. They brought my case up for review and then said I had to do a few things and then they would bring me up for review again. My understanding is that I'm not sick enough, but , I find it interesting that you are only on 2 liters and 4 at exertion. Do you have other things going on that pushed your case up? I find it interesting the different "critieria" hospitals are looking for. I had a friend in Washington who wasn't too sick and he was transplanted over a year ago and doing very well. Part of me feels like you do Gwynne, let's get this over with and then wait, I'm not ready and I'm not even listed yet. Good luck to both of you - I hope you get called soon. Please be sure to let us know. LeanneGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,We were listed just weeks apart! When wereyou diagnosed? Do you know your transplantscore (lung allocation score)? Mine's 37.I was listed for transplant March 8, 2007, atthe Univ. of Texas Southwestern/St. in Dallas.It's weird, because I live in Ft. Worth, which isRegion 3. But my lung will have to come fromRegion 4, where UT Southwestern & my doc are.For a while we worried that my GERD wouldkeep me from being listed, but the most recentesophagram showed great improvement sinceadding Metoclopramide (Reglan) to my Nexium.The esophagrams I've had were no big deal -I just had to drink some gunk while they adjustedme on an x-ray table, from standing to a proneposition...certainly not painful. A few other tests,like a stomach motility study, was NOT fun, unlessyou like sticking a garden hose down your throatfor half an hour (well, it felt like one)!Sorry, I can't answer your other question. I sent apost asking if any others were listed for transplant,but got no response. In all fairness, I got onboard about the same time as some bombshellshit the grieving group.How much oxygen are you on? I dread the nextincrease (although I can tell it's coming) becauseit's going to rule out my portable Helios. Right nowI'm on continuous 4 LPM at rest & at night, 6-8 withactivity. I REALLY still try stay active - I get outquite a bit, although it takes a lot out of me. Mycough is unproductive, and I do NOT need to spendthe summer in the awful Texas heat and ozone, butthat's what I'll do since I can't get too far away fromthe transplant center (also a teaching hospital). Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Pink Joyce IPF 3/06 Pennslvania It's here! Your new message!Get new email alerts with the free Yahoo! Toolbar. Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Hi Pink.. Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up " thanks Leanne Storch wrote: Hi Joyce, Lentz is from Arizona and the other is from Minnesota - the Minnesota is the one that's listed. Leanne Joyce T Rosenberg wrote: Are there two nancy's. Is so, which one is listed for transplant? pink Leanne Storch wrote: Hi Gwynne and , I'm not listed yet.....however, I did go through the lung transplant evaluation. They brought my case up for review and then said I had to do a few things and then they would bring me up for review again. My understanding is that I'm not sick enough, but , I find it interesting that you are only on 2 liters and 4 at exertion. Do you have other things going on that pushed your case up? I find it interesting the different " critieria " hospitals are looking for. I had a friend in Washington who wasn't too sick and he was transplanted over a year ago and doing very well. Part of me feels like you do Gwynne, let's get this over with and then wait, I'm not ready and I'm not even listed yet. Good luck to both of you - I hope you get called soon. Please be sure to let us know. Leanne Gwynne Keyland wrote: , We were listed just weeks apart! When were you diagnosed? Do you know your transplant score (lung allocation score)? Mine's 37. I was listed for transplant March 8, 2007, at the Univ. of Texas Southwestern/St. in Dallas. It's weird, because I live in Ft. Worth, which is Region 3. But my lung will have to come from Region 4, where UT Southwestern & my doc are. For a while we worried that my GERD would keep me from being listed, but the most recent esophagram showed great improvement since adding Metoclopramide (Reglan) to my Nexium. The esophagrams I've had were no big deal - I just had to drink some gunk while they adjusted me on an x-ray table, from standing to a prone position...certainly not painful. A few other tests, like a stomach motility study, was NOT fun, unless you like sticking a garden hose down your throat for half an hour (well, it felt like one)! Sorry, I can't answer your other question. I sent a post asking if any others were listed for transplant, but got no response. In all fairness, I got on board about the same time as some bombshells hit the grieving group. How much oxygen are you on? I dread the next increase (although I can tell it's coming) because it's going to rule out my portable Helios. Right now I'm on continuous 4 LPM at rest & at night, 6-8 with activity. I REALLY still try stay active - I get out quite a bit, although it takes a lot out of me. My cough is unproductive, and I do NOT need to spend the summer in the awful Texas heat and ozone, but that's what I'll do since I can't get too far away from the transplant center (also a teaching hospital). Yahoo! oneSearch: Finally, mobile search that gives answers <http://us.rd.yahoo.com/evt=48252/*http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC> , not web links. Pink Joyce IPF 3/06 Pennslvania It's here! Your new message! Get new email alerts <http://us.rd.yahoo.com/evt=49938/*http://tools.search.yahoo.com/toolbar/features/mail/> with the free You snooze, you lose. Get messages ASAP with AutoCheck <http://us.rd.yahoo.com/evt=47959/*http://advision.webevents.yahoo.com/mailbeta/newmail_html.html> in the all-new Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
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