I was reading a previous post on someone who asked about information about tx's. The conversation turned somewhat into a "whether to have a tx or not" discussion. My FEV is around the 50's so my thinking is that I won't have one when the time comes because I choose quality of life over quantity. BUT, when the time comes, who knows what I will think? It's true that on these chats we will only hear the good story's because the ones with bad story's have died. I want to let you post tx people know that hearing your success stories has opened my eyes to the option of having a tx if the time comes. THANK you sooooo much, your experiences are invaluable to me and other cf's. No one understands a cf but another cf, we all wear the same shoes. When I'm at 25 or 30 FEV and at tx time, maybe I will still choose quality over quantity of life. I won't know until I'm there, and I do know of people who are at tx stage, who choose not to have tx, and I don't think that they are choosing death, or giving up. It's their right to choose to have a transplant or not, that's called being an American. 37 with cf
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To have a lung tx or not?
- Thread starter anonymous
- Start date
Transplant is such an individual thing, and I'm sure when the time comes you will make the right desicion for yourself.I can't agree with your statement more, "that no one understands a CF like another CF"I have said those lines more than once, and after a transplant, no one understands you more than someone thats been through the same process......To me, we are all bonded , maybe not by blood, but by the same disease that make us "us"...Good luck with whatever you choose....
"...I will never have to make this decision..."Then why weigh in on it? Why don't you just skip over to the HIV message board and tell them like it is- even though you don't have HIV, but maybe you know someone who does....Maybe someone over there won't think you've just wasted their time and yours....
Anonymous~Drea has a daughter with CF and is very knowledgable when it comes to the disease. Because CF effects one of the most important people in her life I am sure she has thought about transplants before. If you choose to dismiss all the opinions of the parents and families of CFers (especially Drea's) then you are missing out!Emm
Hi, Quality of life is so important to all of us with CF. And lung transplant does give that also.I know when I was pre tx, I thought that I had a good quality of life and was managing fine. It is not until I got new lungs that I realized that I was being deceived by those CF lungs. Over the years I had compensated, adjusted my life to accomodate my lung health. I worked less, played less, traveled less, and lived less. But it was gradual and I just compensated. Part of this due to the fact that I was fighting CF and not going to let it get me.When I got my new lungs, I then realized what a change it was and that my quality of life was now truly a quality life.So with new lungs you do get more "time" on the earth - as in quantity, but also you get "quality" of life.Lung transplant is truly not for everyone who has CF. It is a personal decision. Those that have the success generally like to share the good news of it.. if you can catch them for a minute. If you did not have success, yes you cannot share that, but I find that newspapers often only report the sad news and not the good stuff. I guess how i feel is that we all know bad things happen, not a real difficult thing to imagine, but we need to be reassured that good things with lung transplant do happen also.Hope this gets posted. I was again banned from posting at my other email.... ???Joanne
Hi Joanne,I am so glad for you that your transplant has been a successful one! I am an almost 30 yr old female with CF (my birthday is the 27th of this month). Right now, my lung function is good. It tends to stay around 80%. Little less right now as I'm just getting over a small infection. I am not at a time where I need a transplant....but I want to say that I have read so many success stories that it makes me less scared if that time should come for me. I have a 5 yr old daughter and I know that I would have a transplant just to be able to spend more time with her! There is not even a doubt in my mind! There are risks to any kind of surgery like a transplant.....but you have to look at the positive side of things...I've always believed that!Again congrats on your successful story!Dea
Something my doctor told me a long time ago, is that if a patient was unsure whether to have a tx or not, she encouraged them to go through the workup because the always decided in then end that they wanted one. It too thought when I was healthier that I would not do it because of all the things I heard about it, however, when the time came, I started talking to people that had been through it and got a very different view of it. Something that a nurse told me about a year before tx was addressed with me is that there had been a young man who had gone through tx, and after about a year was going through chronic rejection. By then it was obvious that he didn't have much time left and the nurse asked him if he were to do it again knowing what he knew now, would he choose to do it again. His answer was 'Yes, because that year was just so worth it'. For me the worst case senario is not death, but being the 1 in 5 who is worse off after 5 years than before they started. I too chose quality of quantity... with a transplant and taking that gamble. Living sick was just no fun, and when you get closer to transplant you will be given a questionaire evaluating your quality of life. It is when your quality is shot that it is time. Certainly, not everyone goes through transplant but I think you are doing the right thing... talking to others who have been there.If you have any questions, please feel free to contact me at heidi@ydl.net.Good luck.Heididbl lung tx 5/2002PS.. you have plenty of time to think about it.