Hi, I'm not responding with an answer, but my son Benjamin is in a very similar situation. He's trying to decide what he wants. He's so fed up with painful medical treatments that he's not sure he even wants a transplant because he's been warned about how difficult it is. I'll be watching this discussion as though I were the one asking in the first place. Have you bee to be evaluated yet?

Hi, I had a double lung transplant eight years ago and not once have I regretted my decision to go through with it. It was a difficult decision to make (to have the transplant) because they say you exchange one set of problems for another, but what I deal with now in no way compares to what I dealt with before my surgery. I can't give you advice on the wait or the evaluation you have to do because I didn't have time to wait on a list so I had what they call a 'living lobar' transplant where two friends of mine each donated one lobe (of their 5) to replace my sick lungs. I have had a great 8 years, have been back to work full-time for 7 of those years (I'm a 1st grade school teacher) and I also adopted a little girl from Russia 6 years ago. Life has been good.

I have been through the complete evaluation and all the numerous tests. I am just waiting to hear how the "presentation" of me goes, and for the official decision to list me on UNOS.

I can't tell you about a lung transplant but I can tell you about a heart transplant.Number one is if your doctors recommendation that you consider a transplant chances are they mean it.They don't put you on the list for no apparent reason.Besides being put on the list for transplant may take years before you actually get one.Or in your case two.The way I looked at it was wether or not I wanted to live or die.When my general practioner and a cardiologist told me to get my affairs in order. That convinced me. I had my transplant in Feb.07.After waiting 3 years,Today I am as healthy and strong as I've ever been.I do not regret my decision for one minuet.Sure it was difficult at first but plan "B" really sucked.I chose life.Greg G

I am new to this group but my daughter was diagnosed with PPH at 10. She was listed right away and received a double lung transplant at 11. The first year was rough. Now she is 17. Finding boys is not a problem. She is a flyer on the cheerleading squad and a second degree black belt in karate beating much larger men nationally!! I don't mean it to sound all rosy because you do exchange one set of problems for another. When I read about the bone marrow testing that in the near future may make antirejection drugs a thing of the past if we could have waited I wish we did. We couldn't and neithor Victoria or I regret a thing. I am happy to answer any questions you have.

I cannot answer from the point of view of being transplanted, but I can tell you that I am on the national wait list for a double lung transplant. It was a tough decision for me. So tough, I had to make it twice. I was listed in the early 90's and chickened out, made myself "inactive" and re-listed again in 2003. I will tell you this, don't wait til you are at death's door to go on that list, they told me the wait would be 2 to 2 1/2 years to find a match...that was 5 years ago on April 18th, 2008. I am doing well waiting, I cannot work though and I wear oxygen 24 hours a day 2L at rest and 4L to exercise. It is a big decision and you do trade your problems now for a different set of problems, but everyone I know that is post will tell you it's worth it. I'm going for it! I will say if your Transplant Center offers Support Group Meetings that cover a wide range of topics that pertain to the transplant issues that come, I would attend the meetings, they can be very helpful.

My son had two double lung transplants. One at age 11 in 2000, and one at age 14 in 2004. He had rejection the first time, and then he passed away 10 months after his 2nd transplant because of infection (multi-resistant pseudomonas). We don't regret the transplants because we gave him every chance possible to live and be happy. Before the first transplant he was only oxygen-dependent at night and he was walking around (slower than most) and was basically happy. I sometimes wonder if we did it too early, but realistically his PFT was only 28% so he could have gotten sick at any time and not pulled through. The second time he was on the ventilator for 33 days literally clinging to life and the doctors were amazed he hung on, got the transplant, and did great until the infection set in. Ideally, the transplant shouldn't be done too early, and of course, can't be done too late. I said all this to say, pray about it and listen to your inner voice, and also to your doctors about when to get listed. Also, I wouldn't read too much about all the different patients' stories because it can be scary. Take one day at a time and pray that you are one of the blessed ones that will do great!