Lung Transplant question
- Thread starter anonymous
- Start date
Emily65Roses
New member
But you can have a lot of similar problems because after a tx, you're on immuno-suppressants. Therefore, your lungs can be susceptable to things like pseudomonas, which we are well acquianted with. So, the last poster is right, the CF can't invade your new lungs because they don't have your CF DNA... but you can still have similar problems, depending on how your particular case goes.
Chronic rejection can also slowly destroy them, lowering lung function and eventually putting you back on oxygen. So don't believe the hype; transplant is not a cure-all. It's just the risky-as-hell, problem-laden, last-resort treatment that, if successful, could make you feel healthy (in comparison to what you feel like now) for years, and otherwise might kill you quicker than you'd die from the CF itself.
I
IG
Guest
You're right transplant is not a cure-all and I'm not sure about other centers but mine made it quite clear that I'd just be switching one evil for another. Unfortunately in the end it wasn't really a choice for me but a necessity to survive.
I
IG
Guest
Jen,
How do you feel since your tx?
Absolutely amazing. It's been a very good experience for me. I know others can say the same, and others can disagree. It just depends on the person.
What problems have you experience, if any?
Problems, I've definitely had my share. I had some rejection for the first few months (not chronic thank goodness). After a few months they changed one of my medications and I haven't had any problems with that since. I happen to be allergic to Cyclosporin (an anti-rejection medication) so the first time they put me on that I had seizures. Also I was recently hospitalized because they found a spot on my lung, they biopsied it, couldn't figure out what was wrong, so just removed the whole spot. Turns out it was an infection. So even though I'm doing very very well, and my FEV's have been like 113% I've still had problems. Like I said before, trading one evil for another. Though for me this evil (transplant) has been less... well... evil.
And, knowing what you know now are you glad you did it? Thanks for your input.
Yes, definitely. I had my doubts right before surgery, unfortunately at that point I wasn't going to allow myself to turn my back on something like this. It turned out to be the best decision that I've ever made. If you have any more questions feel free to email me, my address should be in my CF profile thing.
Jen
How do you feel since your tx?
Absolutely amazing. It's been a very good experience for me. I know others can say the same, and others can disagree. It just depends on the person.
What problems have you experience, if any?
Problems, I've definitely had my share. I had some rejection for the first few months (not chronic thank goodness). After a few months they changed one of my medications and I haven't had any problems with that since. I happen to be allergic to Cyclosporin (an anti-rejection medication) so the first time they put me on that I had seizures. Also I was recently hospitalized because they found a spot on my lung, they biopsied it, couldn't figure out what was wrong, so just removed the whole spot. Turns out it was an infection. So even though I'm doing very very well, and my FEV's have been like 113% I've still had problems. Like I said before, trading one evil for another. Though for me this evil (transplant) has been less... well... evil.
And, knowing what you know now are you glad you did it? Thanks for your input.
Yes, definitely. I had my doubts right before surgery, unfortunately at that point I wasn't going to allow myself to turn my back on something like this. It turned out to be the best decision that I've ever made. If you have any more questions feel free to email me, my address should be in my CF profile thing.
Jen
Hi all,
I know this is a silly question and I should probably know the answer, but I haven't looked that far into my son's future yet. How does life expectancy look after a transplant? Is it increased by several years? Also, what is the success rate of those with transplants? Isn't there always the chance of the body rejecting new lungs? Sorry I'm so misinformed about all this...
I know this is a silly question and I should probably know the answer, but I haven't looked that far into my son's future yet. How does life expectancy look after a transplant? Is it increased by several years? Also, what is the success rate of those with transplants? Isn't there always the chance of the body rejecting new lungs? Sorry I'm so misinformed about all this...
Hi all,
I know this is a silly question and I should probably know the answer, but I haven't looked that far into my son's future yet. How does life expectancy look after a transplant? Is it increased by several years? Also, what is the success rate of those with transplants? Isn't there always the chance of the body rejecting new lungs? Sorry to be so ignorant...
Carey
I know this is a silly question and I should probably know the answer, but I haven't looked that far into my son's future yet. How does life expectancy look after a transplant? Is it increased by several years? Also, what is the success rate of those with transplants? Isn't there always the chance of the body rejecting new lungs? Sorry to be so ignorant...
Carey
I
IG
Guest
Ah I don't know the life expectancy thing, sorry. I honestly don't want to know it. I figure the longer I don't know it the better off I am. I also don't know the success rate of transplants either. I guess I should ask you to clarify the question. The rate of successful transplants performed? In that case... I still don't know. Sorry. There is always a risk of rejection though. Usually it's more common to have some form of rejection within the first 6 months afterwards, since the body is adjusting to the meds and all that. Though there are a few types of rejection. Not all of them are instantly fatal.
Stats: 50% of people are alive after 7years. 70% are alive after 1 year. Note that these stats is with regard to people who have had a transplant 7years ago (if you get what I mean) so the success rates are getting better each year. Therfore for somebody getting a transplant today that % could rise to like 55%. These stats are from an English transplant centre. Also, they say that CF recipiants tend to do better then non CF recipiants (because they're used to doing treatments 24/7 as ooposed to somebody who is not) Shamrock, x
NoDayButToday
New member
Candice-- if you still do not want to know the life expectancies for post-tx patients, don't look at the two posts previous to mine <img src="i/expressions/face-icon-small-wink.gif" border="0">
I
IG
Guest
I noticed 
if I see anything like that I usually just skip over them.
I take my quote seriously <img src="i/expressions/face-icon-small-smile.gif" border="0">
I don't live life by age expectancy; I'd just end up dying when I'm told to, instead of dying when I'm supposed to.
if I see anything like that I usually just skip over them.I take my quote seriously <img src="i/expressions/face-icon-small-smile.gif" border="0">
I don't live life by age expectancy; I'd just end up dying when I'm told to, instead of dying when I'm supposed to.
I don't live life by age expectancy; I'd just end up dying when I'm told to, instead of dying when I'm supposed to.
Good for you, Candace. As it should be! Sounds like you're living life to its fullest. To everyone else - thanks for the info. You guys are great. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Carey
Good for you, Candace. As it should be! Sounds like you're living life to its fullest. To everyone else - thanks for the info. You guys are great. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Carey