Lung Transplant

I am a 24 year old Cf patient.  I am in the process of getting on the lung transplant list at UAB.  I don't know anyone who has been through this and could really use someone to talk to.  I would love to hear from anyone else who has dealt with or is still dealing with this issue.  You can e-mail me or post a reply on here.

Hi,

Congrats for getting listed at UAB.  I am not sure you live in the UAB area, but ask the center if they have a support group that you might be able to attend.  Most lung tx centers have this benefit as they realize the importance of pre and post lung tx patients, meeting, sharing, and learning the process from those who have been through it.

My lung tx was 7 years ago and my sister had hers 3 years ago. Both doing well, though I am in chronic rejection now, but still doing great.

I am not sure what type of concerns, or ideas, or future plans you might be thinking, but please feel free to email me anytime. 

[email protected]

Susan Burroughs who has CF had her tx at UAB about 5 years or so ago.  I think she is very beneficial in connecting with too.

I do have a web site that is for pre and post lung tx folks and a great place to get that inspiration and motivation you sometimes need. And the experiences of others is very emotional, while gives you a more realistic view of what is to come.  I have put the site info below.

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: [email protected]
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/

Lungs for Life Foundation
http://www.lungsforlife.org
Joanne's Bracelet, Transplant Awareness Bracelet, CF Awareness Bracelet
http://www.lungsforlife.org/other_ways/lfl_store.htm

 

I dont' really know what is going on with my body right now..I don't even know what I have. I live in New Mexico and I looked up Christy West and there wasn't anyone, is she married...? do you know what city she lives in? I hope you find your good friend.

Foxy,
Congratualtions!!! I'm not going to tell you that it's all going to be roses - because it's not. But I will tell you that you will be open to opportunities that are amazing:) My husband had a double lung 2 years ago and our lives have improved 10 fold. We have all the ups and downs but there are more ups than downs. If you (or your support system) want to e-mail us we will do our best to answer any questions that you have. If we can't answer a question we (more than likely) know transplant pt that can. "fox at bright ok dot net" (e-mail)
There are some awesome people on www.secondwind.com. Well there is one complainer - just ignore that one.

My wife was diagnosed with IPF about five years ago and finally had a single lung transplant on the 22 of November.  It came down to within a few days of her not making it but the many prayers finally came through.  We found that the ones who went to the support group meetings were either retired or looking for answers.  The best support we found were the people waiting to see the doctor.  Those were the ones who had been planted and had re-entered the main stream of society.  Many had been planted for a lot years and had gone back to work, therefore they had no time to attend the meetings.  My wife went from 10 ltrs. of oxygen at rest and 15-25 when moving across the room to no oxygen at all....  There really are ups and downs but the ups far out weigh the downs.  I am looking for more recent transplants to compare problems and joys with.