Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Natalia, Congrats on getting listed. It is exciting and scarey at the same time. What center? If you ever have any questions about the wait, the surgery, recovery or anything about lung tx, do not hesitate to contact me. I also have a web site now that is called Transplant Support - Lung, Heart/Lung, Heart and there are resources and we have a chat room - which is very popular and also an email support group. Take a look when you get a chance http://groups.msn.com/TransplantSupportLungHeartLungHeart I am over 6 years post lung tx, and my sister is 3 years post lung tx. Both doing great. We feel very fortunate that we are alive and doing well and truly are grateful to our donor families. Take care Joanne Schum luckylungsforjo@... > > I got some encouraging news about lung transplants for me - it looks > like a serious go right now. I have been waiting for this a long time. > I am ready to have the process begin, and to have my new lungs within > the next 15-24 months. It's exciting and has made me really happy > today. Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 In a message dated 1/7/2004 5:27:54 PM Eastern Standard Time, boguslawska@... writes: > I'm not yet listed. My doctor just went through the protocol with me > and she is very positive for me. I have to get a little better to do > the tests at the transplant center. But she is pushing it, and that > makes me happy. > I have to gain some strength first. Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Natalia, Oh, okay. Now that does make a difference. Canada does list differently than the U.S. and the wait is shorter. Sorry for assuming you needed to approach it differently. I have a friend who was listed at Toronto just for 10 days and got his first call. It was a dry run, but it shows how fast the list works in Canada. Good luck with working out and gaining strength. My lung tx surgeon was trained by Dr. , as you know who is the " father " of lung tx. He is now in the states, but that is where he performed the first successful lung tx at Toronto General!! Joanne > Subj: Re: lung transplant > Date: 1/7/2004 6:47:53 PM Eastern Standard Time > From: boguslawska@... > Reply-to: cfparents > To: cfparents > Sent from the Internet > > > > I was told today that the wait at Toronto General is 6-8 months, and I > will be listed within another 6 months, depending on how the > 'interview' process goes. It's funny since I hear all types of numbers > also. > My doctor is Dr.Tullis. She's a world leader in CF, and works closely > with the transplant team. But you are right, I saw a doctor in > Hamilton (a smaller city in Southern Ontario) that had no idea about > the process. I would be stupid to leave the Toronto team - it's the > home of CF. > My lung function hit 32% when I was 'well'. Right now I do not know > what it is, but I'm guessing low 20's. I cannot function without > oxygen. the reason that they want me to wait, is that right now I am > too weak to do the 6 minute walking test, and too weak for a > transplant. The goal is for me to get to some sort of base-line. > Since I am getting a bit better every day, I still have that base-line > to reach. > My center is the Toronto General one. It's fantastic. Plus I live a > few minutes away from it, so it's god-sent. Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 In a message dated 1/7/2004 6:47:48 PM Eastern Standard Time, boguslawska@... writes: > Plus I live a > few minutes away from it, so it's god-sent. > Isn't it scary what we now consider LUCKY. Boy do standards/things change....... Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 What wonderful news. I wish for you that the time moves quickly and that you get some new lungs very soon. You are in our thoughts every day. Keep us posted and if you can't then we will wait to here from . He is a good brother and will keep us informed. Tina W. lung transplant I got some encouraging news about lung transplants for me - it looks like a serious go right now. I have been waiting for this a long time. I am ready to have the process begin, and to have my new lungs within the next 15-24 months. It's exciting and has made me really happy today. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 So are u getting eval'ed then? lung transplant I got some encouraging news about lung transplants for me - it looks like a serious go right now. I have been waiting for this a long time. I am ready to have the process begin, and to have my new lungs within the next 15-24 months. It's exciting and has made me really happy today. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 YES.YES.YES.. It is a great " GO " too Love & hugs, best wishes included! GrandmomBEv lung transplant I got some encouraging news about lung transplants for me - it looks like a serious go right now. I have been waiting for this a long time. I am ready to have the process begin, and to have my new lungs within the next 15-24 months. It's exciting and has made me really happy today. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 I got some encouraging news about lung transplants for me - it looks like a serious go right now. I have been waiting for this a long time. I am ready to have the process begin, and to have my new lungs within the next 15-24 months. It's exciting and has made me really happy today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 I was told today that the wait at Toronto General is 6-8 months, and I will be listed within another 6 months, depending on how the 'interview' process goes. It's funny since I hear all types of numbers also. My doctor is Dr.Tullis. She's a world leader in CF, and works closely with the transplant team. But you are right, I saw a doctor in Hamilton (a smaller city in Southern Ontario) that had no idea about the process. I would be stupid to leave the Toronto team - it's the home of CF. My lung function hit 32% when I was 'well'. Right now I do not know what it is, but I'm guessing low 20's. I cannot function without oxygen. the reason that they want me to wait, is that right now I am too weak to do the 6 minute walking test, and too weak for a transplant. The goal is for me to get to some sort of base-line. Since I am getting a bit better every day, I still have that base-line to reach. My center is the Toronto General one. It's fantastic. Plus I live a few minutes away from it, so it's god-sent. On Wednesday, January 7, 2004, at 05:53 PM, luckylungsforjo@... wrote: > Natalia, > > Thanks for explaining what step you are in. > Getting listed is a tiring and long process. I know when my CF doctor > told me > that I needed to look into lung tx, in June of 1994, I wanted to run > the > other way. But by the weeks end I was ready to start the process. I > did not get > listed until March of 1995. So that can alone take some time. > > Then the wait for lungs is about 2 to 3 years for a double lung tx.  > > How did your doctor come up with 15 to 24 months you would have lungs? > That > seems sort of short for a wait, and considering you are not listed > yet. Often > CF docs do not understand the whole process or how long it takes or > how the > waiting list truly works. Blood type and size matter a great deal. > > You said you need to build strength before you start for > evaluation.... how > so? I was 5'5 " and weighed a hefty 100 pounds when I got listed. My > FEV 1 was > 28%. > > Do you know what your FEV1 is? Most centers will evaluate a CF patient > when > they hit the magic 32% FEV1.  My reason for mentioning this is that > DO NOT > WAIT to gain weight, or get stronger, you will have plenty of time to > do that > while waiting for lungs. The time on the list is very important and > presently > the more time you have the better you are. So get listed, then work on > the body > more. They will most likely require you to work out to get your lungs, > heart, > bones and muscles in shape for the surgery, and it works to your > benefit as it > makes the recovery easier and faster. > > What center would you consider? I can tell you that there are a few > centers > with shorter waits. Cleveland Clinic, Duke University, Oschner - New > Orleans. > The others would have the longer waits. > > Joanne Schum > > > I'm not yet listed. My doctor just went through the protocol with me > > and she is very positive for me. I have to get a little better to do > > the tests at the transplant center. But she is pushing it, and that > > makes me happy. > > I have to gain some strength first. > > > > > Joanne M. Schum > > Cystic Fibrosis > Bi-lateral Lung Transplant Recipient > September 12, 1997 > University of North Carolina Hospitals Chapel Hill > Residence: Upstate New York > email: luckylungsforjo@... > Manager of: Transplant Support - Lung, Heart/Lung, Heart > http://groups.msn.com/TransplantSupportLungHeartLungHeart > > " Taking Flight - Inspirational Stories of Lung Transplantation " > Compiled by Joanne Schum > Authored by lung recipients around the world > http://www.trafford.com/robots/02-0497.html > http://www.trafford.com/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Natalia, I am glad that the wait is only 6-8 months. I wish that more people in the USA would sign up to be organ donors. People don't realise what a difference it makes. Congratulations! Gale > > > Natalia, > > > > Thanks for explaining what step you are in. > > Getting listed is a tiring and long process. I know when my CF doctor > > told me > > that I needed to look into lung tx, in June of 1994, I wanted to run > > the > > other way. But by the weeks end I was ready to start the process. I > > did not get > > listed until March of 1995. So that can alone take some time. > > > > Then the wait for lungs is about 2 to 3 years for a double lung tx.  > > > > How did your doctor come up with 15 to 24 months you would have lungs? > > That > > seems sort of short for a wait, and considering you are not listed > > yet. Often > > CF docs do not understand the whole process or how long it takes or > > how the > > waiting list truly works. Blood type and size matter a great deal. > > > > You said you need to build strength before you start for > > evaluation.... how > > so? I was 5'5 " and weighed a hefty 100 pounds when I got listed. My > > FEV 1 was > > 28%. > > > > Do you know what your FEV1 is? Most centers will evaluate a CF patient > > when > > they hit the magic 32% FEV1.  My reason for mentioning this is that > > DO NOT > > WAIT to gain weight, or get stronger, you will have plenty of time to > > do that > > while waiting for lungs. The time on the list is very important and > > presently > > the more time you have the better you are. So get listed, then work on > > the body > > more. They will most likely require you to work out to get your lungs, > > heart, > > bones and muscles in shape for the surgery, and it works to your > > benefit as it > > makes the recovery easier and faster. > > > > What center would you consider? I can tell you that there are a few > > centers > > with shorter waits. Cleveland Clinic, Duke University, Oschner - New > > Orleans. > > The others would have the longer waits. > > > > Joanne Schum > > > > > I'm not yet listed. My doctor just went through the protocol with me > > > and she is very positive for me. I have to get a little better to do > > > the tests at the transplant center. But she is pushing it, and that > > > makes me happy. > > > I have to gain some strength first. > > > > > > > > > > Joanne M. Schum > > > > Cystic Fibrosis > > Bi-lateral Lung Transplant Recipient > > September 12, 1997 > > University of North Carolina Hospitals Chapel Hill > > Residence: Upstate New York > > email: luckylungsforjo@a... > > Manager of: Transplant Support - Lung, Heart/Lung, Heart > > http://groups.msn.com/TransplantSupportLungHeartLungHeart > > > > " Taking Flight - Inspirational Stories of Lung Transplantation " > > Compiled by Joanne Schum > > Authored by lung recipients around the world > > http://www.trafford.com/robots/02-0497.html > > http://www.trafford.com/ > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 to be honest with you I don't know why there is such a considerable difference between Canada and the States? And I don't think it's the same everywhere in Canada, I think Toronto is particular. It makes me sad that it's not the same everywhere. It should be. On Wednesday, January 7, 2004, at 09:04 PM, danieleverettharris wrote: > Natalia, > I am glad that the wait is only 6-8 months. I wish that more people > in the USA would sign up to be organ donors. People don't realise > what a difference it makes. > > Congratulations! > Gale > > > > > > > Natalia, > > > > > > Thanks for explaining what step you are in. > > > Getting listed is a tiring and long process. I know when my CF > doctor > > > told me > > > that I needed to look into lung tx, in June of 1994, I wanted to > run > > > the > > > other way. But by the weeks end I was ready to start the > process. I > > > did not get > > > listed until March of 1995. So that can alone take some time. > > > > > > Then the wait for lungs is about 2 to 3 years for a double lung > tx.  > > > > > > How did your doctor come up with 15 to 24 months you would have > lungs? > > > That > > > seems sort of short for a wait, and considering you are not > listed > > > yet. Often > > > CF docs do not understand the whole process or how long it takes > or > > > how the > > > waiting list truly works. Blood type and size matter a great > deal. > > > > > > You said you need to build strength before you start for > > > evaluation.... how > > > so? I was 5'5 " and weighed a hefty 100 pounds when I got > listed. My > > > FEV 1 was > > > 28%. > > > > > > Do you know what your FEV1 is? Most centers will evaluate a CF > patient > > > when > > > they hit the magic 32% FEV1.  My reason for mentioning this is > that > > > DO NOT > > > WAIT to gain weight, or get stronger, you will have plenty of > time to > > > do that > > > while waiting for lungs. The time on the list is very important > and > > > presently > > > the more time you have the better you are. So get listed, then > work on > > > the body > > > more. They will most likely require you to work out to get your > lungs, > > > heart, > > > bones and muscles in shape for the surgery, and it works to your > > > benefit as it > > > makes the recovery easier and faster. > > > > > > What center would you consider? I can tell you that there are a > few > > > centers > > > with shorter waits. Cleveland Clinic, Duke University, Oschner - > New > > > Orleans. > > > The others would have the longer waits. > > > > > > Joanne Schum > > > > > > > I'm not yet listed. My doctor just went through the protocol > with me > > > > and she is very positive for me. I have to get a little better > to do > > > > the tests at the transplant center. But she is pushing it, and > that > > > > makes me happy. > > > > I have to gain some strength first. > > > > > > > > > > > > > > > Joanne M. Schum > > > > > > Cystic Fibrosis > > > Bi-lateral Lung Transplant Recipient > > > September 12, 1997 > > > University of North Carolina Hospitals Chapel Hill > > > Residence: Upstate New York > > > email: luckylungsforjo@a... > > > Manager of: Transplant Support - Lung, Heart/Lung, Heart > > > http://groups.msn.com/TransplantSupportLungHeartLungHeart > > > > > > " Taking Flight - Inspirational Stories of Lung Transplantation " > > > Compiled by Joanne Schum > > > Authored by lung recipients around the world > > > http://www.trafford.com/robots/02-0497.html > > > http://www.trafford.com/ > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Natalia, UNOS is the organization in the states that organizes and keeps the waiting list for all organs moving. UNOS has a board of directors and surgeons and other medical professionals are consulted for the rules and how it works. Hearts and livers are allocated according to " who is sickist " . Presently lungs are allocated according to time on the list, and then of course blood type and size. So time matters in the states. Our wait would appear to be longer, now that I look at Canadian system. We are listed at 32%, if we want. Most centers may see that at 32% you are approximately at a life expectancy of 2 years. But I know that Canada waits to list you until you are lower in your FEV1 so the wait may appear not to be so long. There is however discussion at UNOS and its medical professionals that the lungs need to be distributed differently. They would like a system similar to the heart and livers, but not identical. It is still in the works, but will be voted on this summer or fall. I think whatever works best for each country is the best way to go. I am not sure the % of donorship there is in Canada. I am sure that plays a large role also. Since my lung tx, I do a great deal of speaking for my local organ procurement agency. I have learned a great deal about all organ, tissue, eye, bone donation. Amazing stuff. Joanne Schum luckylungsforjo@... > to be honest with you I don't know why there is such a considerable > difference between Canada and the States? And I don't think it's the > same everywhere in Canada, I think Toronto is particular. It makes me > sad that it's not the same everywhere. It should be. Joanne M. Schum Cystic Fibrosis Bi-lateral Lung Transplant Recipient September 12, 1997 University of North Carolina Hospitals Chapel Hill Residence: Upstate New York email: luckylungsforjo@... Manager of: Transplant Support - Lung, Heart/Lung, Heart http://groups.msn.com/TransplantSupportLungHeartLungHeart " Taking Flight - Inspirational Stories of Lung Transplantation " Compiled by Joanne Schum Authored by lung recipients around the world http://www.trafford.com/robots/02-0497.html http://www.trafford.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Good question Patty !Maggie 64 IPF-3/07-TX Subject: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 5:52 AM To all of you who are or have been listed for a lung transplant I am curious about something: Can you be listed in more than one place, and if so do you have to go throught the entire evaluation process at each place you list?I always thought there was just one list nationwide, but after reading the posts I realize I really don't understant the process at all. Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Patti You are listed with a transplant center and, yes, you may be listed in more than one place if you can reach more than one place in the required time. You may have to go through some or all of the process at each place. The person I know who was listed at UTSW (University of Texas Southwestern) and UTSA (University of Texas San ) did not. UTSA did accept most of what was done at UTSA. Now, each center has its own rules. Some may also not want to double list you. > > > To all of you who are or have been listed for a lung transplant I am > curious about something: > > Can you be listed in more than one place, and if so do you have to go > throught the entire evaluation process at each place you list? > I always thought there was just one list nationwide, but after reading > the posts I realize I really don't understant the process at all. > > Patti Indianapolis IPF 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Bruce, Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. So much to learn! Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 yes you can be listed at multiple places, don't know about the process at each place i am registered at one place, they have gone to the Midwest and New England to bring back organs there is a national registry that oversees everything if you are considering a transplant, contact UNOS, they have all of the info for organ transplants they also have free materials, you just have to pay shipping and handling, minimal fee compared to the data that you receive from them especially important is the booklet that explains the Lung Allocation Score -- LAS usually the window for lungs is 6 hours, and Penn wants it's candidates to be within a two hour drive yet there is someone from Texas who arranged for air transport to a transplant center when her lung became available you also need to consult with a transplant team at a transplant center for more specific information Penn used to have a cut off age of 65, last year they upped it to 70 there was a lady at Penn from New Orleans, after Katrina, she moved to Philly to wait for her lungs, not sure how long she waited, but she got her lungs last winter Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 8:52 AM To all of you who are or have been listed for a lung transplant I am curious about something: Can you be listed in more than one place, and if so do you have to go throught the entire evaluation process at each place you list?I always thought there was just one list nationwide, but after reading the posts I realize I really don't understant the process at all. Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Joyce....thank you I am going to the UNOS website right now. Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Patti No, it is by region. Organs are transported. > > Bruce, > Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. > So much to learn! > > Patti Indianapolis IPF 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 the reality is that there is a central place that determines where the organs will go it also looks at location regarding lungs because of the limited "window" for lungs compared to kidneys, it compares the closest place with the organ to the place where the LAC score is highest then it also looks at blood type and I was told size my transplant doc talks about my need for a small pair of lungs all of the time there is someone who wrote about receiving a pair of lungs that were too big and the surgeons cut or trimmed the lungs to make them fit i think her transplant was about 6 years prior to her post don't remember if it was this site or the transplant site it also depends on your LAC, there is a lot of data that goes into to determining your LAC if you go into the unos web site, you can get a rough estimate of your score by plugging in some of the data that you know the transplant team plugs in all of the data needed the show about transplants -- Three Rivers -- had its pros and cons -- some things i found realistic, but lots of stuff was very unrealistic just from what i have learned via the transplant team, etc one of the things that i found interesting, was after coming off of the plane with the organ, they got stuck in a traffic jam from the airport to the hospital the best part of that episode for me was when the lung inflated -- that brought tears to my eyes-- happy tears the other thing i like about the show if the PR that Gift of Life is getting check out their web site too and if possible, get involved with them it's very exciting being around organ recipients and getting to know some of the donor families Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 10:44 AM Bruce, Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. So much to learn! Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 I work with a lady whose parents are organ transporters.  They travel all over to collect organs and deliver to somewhere else.  But there is a time frame issue and that's where the coordination team does their job.  Wherever they send them to pick up, they have to deliver within a certain distance to keep the organs viable. Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough.....Subject: Re: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 11:28 AM  Patti No, it is by region. Organs are transported. > > Bruce, > Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. > So much to learn! > > Patti Indianapolis IPF 2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Roxanne tell your coworker that I thank her parents for the wonderful job that they are doing i never really thought about the people who drive around or fly to pick up the organs i know part of the transplant team goes to check out the organ prior to taking it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 11:33 AM I work with a lady whose parents are organ transporters. They travel all over to collect organs and deliver to somewhere else. But there is a time frame issue and that's where the coordination team does their job. Wherever they send them to pick up, they have to deliver within a certain distance to keep the organs viable. Roxanne, 59, South Carolina2006 Asthma/ PF2008 PF/ Sarcoidosis/ GerdI pray you enough..... From: Bruce <brucemoreland@ gmail.com>Subject: Re: Lung TransplantTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 11:28 AM PattiNo, it is by region. Organs are transported.>> Bruce,> Interesting stats! So if you are listed at one center then the lungswould only have been donated directly in that hospital? In other wordsthere are no transplant teams that go from one place to another to pickup lungs for transplant like they do with heart transplants. If that isthe case, could a person in critical condition at one hospital diewaiting when in fact someone not nearly as bad off could receive lungsbecause they came available where they were listed? Perhaps I havewatched too much TV where you see the team taking a plane across the USto pick up organs and then return within hours for translation.> So much to learn!>> Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 so where do you plug in your data on the site Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009 To: Breathe-Support Sent: Sat, January 2, 2010 10:32:20 AMSubject: Re: Re: Lung Transplant the reality is that there is a central place that determines where the organs will go it also looks at location regarding lungs because of the limited "window" for lungs compared to kidneys, it compares the closest place with the organ to the place where the LAC score is highest then it also looks at blood type and I was told size my transplant doc talks about my need for a small pair of lungs all of the time there is someone who wrote about receiving a pair of lungs that were too big and the surgeons cut or trimmed the lungs to make them fit i think her transplant was about 6 years prior to her post don't remember if it was this site or the transplant site it also depends on your LAC, there is a lot of data that goes into to determining your LAC if you go into the unos web site, you can get a rough estimate of your score by plugging in some of the data that you know the transplant team plugs in all of the data needed the show about transplants -- Three Rivers -- had its pros and cons -- some things i found realistic, but lots of stuff was very unrealistic just from what i have learned via the transplant team, etc one of the things that i found interesting, was after coming off of the plane with the organ, they got stuck in a traffic jam from the airport to the hospital the best part of that episode for me was when the lung inflated -- that brought tears to my eyes-- happy tears the other thing i like about the show if the PR that Gift of Life is getting check out their web site too and if possible, get involved with them it's very exciting being around organ recipients and getting to know some of the donor families Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Patti <napa73 (AT) comcast (DOT) net>Subject: Re: Lung TransplantTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:44 AM Bruce, Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. So much to learn! Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 you have to explore the site, it's been a long time since i have done it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Lung TransplantTo: Breathe-Support Date: Saturday, January 2, 2010, 12:12 PM so where do you plug in your data on the site Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009 From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 10:32:20 AMSubject: Re: Re: Lung Transplant the reality is that there is a central place that determines where the organs will go it also looks at location regarding lungs because of the limited "window" for lungs compared to kidneys, it compares the closest place with the organ to the place where the LAC score is highest then it also looks at blood type and I was told size my transplant doc talks about my need for a small pair of lungs all of the time there is someone who wrote about receiving a pair of lungs that were too big and the surgeons cut or trimmed the lungs to make them fit i think her transplant was about 6 years prior to her post don't remember if it was this site or the transplant site it also depends on your LAC, there is a lot of data that goes into to determining your LAC if you go into the unos web site, you can get a rough estimate of your score by plugging in some of the data that you know the transplant team plugs in all of the data needed the show about transplants -- Three Rivers -- had its pros and cons -- some things i found realistic, but lots of stuff was very unrealistic just from what i have learned via the transplant team, etc one of the things that i found interesting, was after coming off of the plane with the organ, they got stuck in a traffic jam from the airport to the hospital the best part of that episode for me was when the lung inflated -- that brought tears to my eyes-- happy tears the other thing i like about the show if the PR that Gift of Life is getting check out their web site too and if possible, get involved with them it's very exciting being around organ recipients and getting to know some of the donor families Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Patti <napa73 (AT) comcast (DOT) net>Subject: Re: Lung TransplantTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 10:44 AM Bruce, Interesting stats! So if you are listed at one center then the lungs would only have been donated directly in that hospital? In other words there are no transplant teams that go from one place to another to pick up lungs for transplant like they do with heart transplants. If that is the case, could a person in critical condition at one hospital die waiting when in fact someone not nearly as bad off could receive lungs because they came available where they were listed? Perhaps I have watched too much TV where you see the team taking a plane across the US to pick up organs and then return within hours for translation. So much to learn! Patti Indianapolis IPF 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Well thanks Pink, I will.  I tell her all the time that when my time comes I'm going to be picky......Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd I pray you enough..... From: Bruce <brucemoreland@ gmail.com>Subject: Re: Lung TransplantTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 2, 2010, 11:28 AM  PattiNo, it is by region. Organs are transported.>> Bruce,> Interesting stats! So if you are listed at one center then the lungswould only have been donated directly in that hospital? In other wordsthere are no transplant teams that go from one place to another to pickup lungs for transplant like they do with heart transplants. If that isthe case, could a person in critical condition at one hospital diewaiting when in fact someone not nearly as bad off could receive lungsbecause they came available where they were listed? Perhaps I havewatched too much TV where you see the team taking a plane across the USto pick up organs and then return within hours for translation.> So much to learn!>> Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
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