Anyone Have A Lung Transplant?

I cant give a whole lot of advice on this, having never had a transplant myself.

I have had 2 friends who have had transplants and survived and are doing incredibly well with there lives. There has been a lot of advertising in the UK about organ donation, simply because those 2 people have decided to live there lives now, creating help for other people. They have made a charity to provide support and information to those on the list, or just wantng to know more about it.

I have also had a friend who died before transplant as she decided she was too scared of the aftercare. It was a heartbreaking decision for all of us. But it proves how tough it is, as I know more than anythng that she wanted to carry on living. She just didn't want any more trauma to go through.

I have grown up knowing that one day I'll definately need a transplant, but even knowing has not got me in the sligtest bit prepared. The thought of it still scares me, even though I have my 2 friends who are alive thanks to the gift of life. There is that fear, but then also the excitement that you're going to feel well for the first time since you can remember. It will no longer feel like a cheesegrater going up a down your lungs when you cough.

Transplant brings with it its own set of medication and trouble. But, not as much as CF causes.

See, transplant talk makes me babble lots, because I'm not that sure myself either. I guess one day I'm going to just have to deal with it. I probably will easily enough.

Have a look here:

http://www.intoto.org.uk/ 

This is a site with a forum specifically for while you are on the list. On it, are people who are going through the wait themselves and also those who have had a transplant and are there to give there experiances. It is ran by the people I know who have had a transplant, and they're a friendly bunch to my knowledge (not actualy used the forums myself yet.)

This isn't meant as a post to send you to them. But more info for you, so you have a wider access to support, while you're going through a difficult, scarey and exciting journey.

All the best

Gemma

Dear Shawn:  Thanks for taking the time to write to me - it's nice to talk to someone who is in the same position and knows what it's like to go through this.  You did answer some of my questions.  I do have a couple of more for you.  How did it feel when you woke up and you were on the ventilator?  Was it scary?  Did it feel strange?  How does it feel now to have lungs that work?  I to am on oxygen 24/7 at 4 liters and it's still hard to breathe.  My FEV's are at 19% and it's a struggle just to walk from room to room.  It's amazing how fast they found lungs for you.  I have been on the list since the beginning of December but since I'm so small (5', 120 lbs.) I need lungs from someone small.  My biggest regret about this whole thing is that some parent will have to lose their child for me to live - where is the justice in that?  Are you married?  If yes, how does your spouse cope with it?  I was married but my spouse couldn't handle it and walked out on me - but that's okay, it made me stronger for my two boys (13 and 10).  I hear your area of the world is really beautiful - never been there but maybe some day.  Don't worry about your computer skills because mine suck too.  I hunt and peck.  Hope I didn't babble on too much.  Hope to hear from you again.  TAKE CARE AND GOD BLESS!!!!

Vickie     

Dear Jodi-

 Thank you for your letter. I am really glad to hear from people in my boat!! Did they find your CF as a child? I was 27 and VERY SHOCKED. I was always told it was bronchitis or pnemonia. When they first told me I didn't know what to do or where to go. After I started getting sicker and needed O2 and more meds. and ALL that great stuff, my ex walked out. But that's all good now, I have two WONDERFUL boys who support me and help me out when needed. My oldest is 13 and youngest headed for 11. They are excited for me because they want me to be able to run and do things with them.

I'm glad that you found such a great husband. I decided to go back to the father of my kids, on and off for 19 years, thought he'd understand and be the BIGGEST supporter of them all but just told me he's leaving after my surgery. So another hits the road. Maybe I should write a song about it! (HAHA)

You know I was just at the Clinic today, yeah I live in the Cleve. area, and I met a lady who is 46 and going for her SECOND transplant. She is 10 years out but caught pneumonia and started to reject. She also told me about the transplant buddies. That's twice in one day so I'm going to check it out!!! Sorry if I'm babbling but it is so nice to hear about ADULTS having this. At first it seemed like all I heard about were young kids and it was depressing!! I know how you feel about needing small lungs, this is REALLY upsetting me.

Okay, I'm really going to stop talking now! Please responed if I haven't driven you crazy. Please take care of yourself and again THANK YOU for your time

Vickie