Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 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 Wow, Congrats on getting listed. 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 Good news! Our thoughts will be with you and keep us posted! It is exciting and sounds real positive. Good luck & stay happy. Debbie 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'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. On Wednesday, January 7, 2004, at 05:15 PM, luckylungsforjo@... wrote: > 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...
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