Life after tranplant ? Anyone ?

[bowlingguy]

Hello, I have been asked to thikn about getting listed for transplant since i was 24, i am now 33 and just started the process of being listed. I have known many cystics in my life, both as good friends and some as just in house friends (hospital that is). I have seen roughly 3 good friends and 10 or so house friends get transplanted, all died within 3 years most closer to 1 year, and some had alot of problems during that year. Its odd cause my hospital is USC which has the #1 lung transplant surgen and they always tell me incredibly high survival rate numbers when i ask about them. But from my experiences all i see is the negative side. So I would love to hear more from cf'ers who are transplanted, maybe some indepth stories of how it changed your life etc etc...cuz In all reality I know when my time comes i want a transplant, but right now my confidence about it is very very low. Thanks in advance for all replies...

 

[Diane]

Hi Paul, I just thought you may want to take a look at this website, there are personal stories and all sorts of info on transplants, which may help you out. <img src="i/expressions/face-icon-small-smile.gif" border="0"> http://www.transplantbuddies.org/Diane 39 / cf / diabetes / b.cepacia

 

[bowlingguy]

great site diane thanks ill take time and read through it...

 

[RadChevy]

Paul, You have chosen a great center for your lung transplant.I am so sorry that you are only hearing the "bad" stories of lung tx, as that is not the case in most instances. I too when waiting for lungs, and again when my sister was waiting for lungs read only the "bad" stories. It seems the media is very intent on sharing the bad news and not getting the success out there.So I put an end to it. I had a book published of 265 stories of lung tx success. Then last June I started a web site for those both pre and post tx to share, learn and hear the experiences.Below is the info on both of those projects I took on and hope you will join us. I am now 6.5 years post tx, and my sister is 3 years. So we have both beaten the odds you have seen and there are many who are many more years out than my sister and I. I have a friend who is 17 years post lung tx!!! Please feel free to contact me if you like. luckylungsforjo@aol.comJoanne

 

[bowlingguy]

joanne thats amazing, 17 years? whoa from info i have gathered i was told 10 years is about the longest post tx, but 17 sounds amazing, maybe 10 was lobar, i dont rememeber, so im curious most the tx i have known the cfers of were usually lobar, some cataveric but higher percent were lobar, anyway u read any data saying which is more prown to rejection or infections? and you didnt post the address of the site u started, im interested in reading through it, thanks...

 

[RadChevy]

Paul,Ooops I forgot to put the site. One of the benefits of Prograf, one of my immune suppression drugs.http://groups.msn.com/TransplantSupportLungHeartLungHeartAs far as living lobar vs. cadeveric, being that you are listing at USC, you most likely do know more stories of living lobar. Dr. Vaughn Starnes is the creator of living lobar and the best at it. I am guessing he started that about 1990 or so. But lung tx was begun in 1987 approximately in the U.S. As to which type of tx is more successful. I have read that they are very close. I know for a time they were saying living lobar, but think the cadeveric have now balanced out to the same level. It really depends on so much. When you get your tx, how sick you were, did you work out to get in shape, what are the complications after, are you compliant. But I also have read that even if you have a rough start to post tx life, that is no indicator that it will be a bad time post tx. My immediate post tx time was not smooth sailing, but I am doing wonderful. I read many, many medical journals about the latest in lung tx, so try to keep up to date and share the info I learn.Take a look at the site, join the email group and ask away, and stop into chat any evening. Always there, and always chatting... or just hang out if you are alone in the chat room and someone is bound to show up. Below is more info about the site.Please don';t hesitate to ask any questions.JoanneJoanne M. SchumCystic FibrosisBi-lateral Lung Transplant RecipientSeptember 12, 1997University of North Carolina Hospitals Chapel HillResidence: Upstate New Yorkemail: luckylungsforjo@aol.comManager of: Transplant Support - Lung, Heart/Lung, Hearthttp://groups.msn.com/TransplantSupportLungHeartLungHeart"Taking Flight - Inspirational Stories of Lung Transplantation" Compiled by Joanne SchumAuthored by lung recipients around the worldhttp://www.trafford.com/robots/02-0497.htmlhttp://www.trafford.com/