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lung x question
- Thread starter anonymous
- Start date
AbsintheSorrow
New member
I haven't been there yet myself. And I haven't a clue. But it couldn't hurt to bring it up and ask.
Debbie,I can tell you that from what I know, the transplant centers won't even see you until your FEV1 is 30 or less. If this is the case, by all means, mention it to your Dr. He/she really should have mentioned it already if your FEV1 is 30 unless they feel that there are circumstances that may make it harder for transplant (b cepacia, uncontrolled diabetes (possibly), etc) and they should mention if they are not considering transplant, why.Maybe you're too healthy, that's always good to hear! Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
does anyone here think that 30% is too low for the cut off point? i mean people at 30% are so weak and have had the stuffing knocked out of them, its just so dangerous below 30%, or even below 50%! its amazing how they pull through. personally, i feel to have a higher success rate the cut off point should be raised to 40%.
I agree that people shouldnt be put off of a list just because their fev1 is too high. I believe each individual is different...and docs of all people should know that by now. I thing going by numbers can be risky. Two people can have the same lung function and feel totally different. Just my opinion!Dea
I think that 30% is a good cut off point, but that it should eventually boil down to each situation specifically. The only reason I say that is because I have an FEV1 of 39% (just did pft's yesterday), and I just went running, as I do everyday. I am not weak or anything, and I can tell you I would be pretty freaked out if my doc was suggesting me for a transplant. I think that 30 is a good number because you can guarantee that in the majority of those cases, people are pretty sick, you go any higher than 30, and sometimes it is just the mystery of CF...like why are my pft's so low, yet i feel healthy. A transplant is not an easy thing to deal with....i am amazed sometimes when people will ask my parents ( i dont think they have the gall to say it to me)..."why doesnt she jsut get a transplant'. Ha! if they only knew....
yeah doing transplants on an individual basis sounds good. im 58% at the moment yet i cant do anything that requires effort/strength. it annoys me that id have to wait until 30% to be able to get a transplant because ill be pretty damn bad by then, considering im bad now and im 58%, which is considered good to some.
slightly worried at how people seem to be talking about Tx as if they have had to wait all their lives till they can FINALLY get on the list. transplant is not fun. it is not safe, it is not always successful. that is why there is a 30% boundry. the mortality rate has to be estimated at 2 years before you can get on the Tx list, to make the huge risks of Tx worthwhile. those of us who havent reached that stage yet are the lucky ones; i was nearly there myself last year and luckily i am still hanging on in there away from assessment. and i am GLAD! thats a good thing!! dont wish transplant upon yourself people!!! there are many fantastic stories we hear about on these boards, but there are hundreds that dont succeed; its not an easy way out of CF.
no one is wanting a transplant, and no one thinks its an easy way out. we are just discussing individual cut off points as some peoples condition varies greatly from others. part of the reason why transplants arent successful IS because some people are too far gone because their bodies have been affected more by cf. as someone said, they are 39% and feeling fine, but im 58% and can hardly do anything, so how is someone who gets affected more suppose to wait until 30%? do you get me? dont try and make us feel like ungrateful whingers, we all want to be well, and we also dont want to be compared to others who have quite different symptoms. besides, its just a discussion.Kylie
i never said anyone was whinging!!! far from it!!! i was just pointing out that i was concerned as to what i thought some people were inferring! exactly as you say, this is a discussion, that was my point of view and contribution in the discussion.please dont be so agressive in your response, if you read mine again it was a concern not a critisism or accusation. i found your response a little hostile and so will assume you read hostility in mine; if you did i appologise profusely. in england, criteria for lung Tx is certainly not only based on lung function. i agree with you that this would be a daft assessment, it is also based on oxygen levels etc. as i stated i think the doctor has to be convinced that the likelyhood of you surviving 2 years is less than 50%. but of course the problem with this is that this is just one persons prediction, so not very accurate!!!hopefully you are not able to read anything unfriendly into this response, and i am able to continue joining the discussion <img src="i/expressions/face-icon-small-smile.gif" border="0">
Just my 2 cents. I can't believe that people are going by numbers to how they live life. My FEV1 is at 45% and I do just as much as my friends who don't even know what an FEV1 is. I walk 1 mile a day five days a week and I exercise the best I can for as long as I can daily. I'm also 30 and if I went by numbers to rule my life then I will be dead in two years because I will be 32. I will never live my life by numbers. I feel that when my time is up when I have finally filled God's will then I shall pass on from this life to the next which will be in Heaven. I do believe that if all your going to do is complain about how hard life is with CF, then do something about it. I mean exercise and don't say you can't. The person who says they can't will never do anything. Take life by the horns so to speak force yourself to live. We only get this life for so long and we all need to show that CF is not going to take us down. Fight with every thing you got. I also wanted to add that when I'm sick and feel like the I can't do anything, I get myself outside if weather is ok and sit and think about getting well. I refuse to let CF kill me but if it does at least I fought with every thing I have to survive for years and not just sat there until death complaining and bitching. Melissa 30 yrs old plaining to get to 60 one day at a time
AbsintheSorrow
New member
I just want to put in my own two cents as well. Melissa, you have to remember... most people come here because no one healthy relates to us. So we come here specifically to ask questions and get feedback and talk to other CFers in order to have someone to relate to. A lot of the people here that come to ask about stuff, and complain about other stuff probably live lives that are far from what they seem. I tend to ask stuff and complain about stuff on this forum, and in my life (within reasonable means of course), I do what I want. I live the way I want, etc etc. I just wanted to point out that we don't have many places to go in which to talk to other CFers. So it may seem like we're all whining here... but that's because a lot of us are doing almost all of our complaining here and nowhere else.
AbsintheSorrow
New member
You swear you're 43? Because you're acting like you're about 10. I would just like to point out a few things. You may be living to 43 which is awesome, and good for you. But there are still many people who die before they reach 20. You may be doing well, but there are people worse off. Just like there are people with diseases way worse than CF, there are CFers way worse off than you. And I hope you were talking to another EMILY because I don't recall saying anything that would make you point out that there are others who need lungs too. I'm aware of that. I'd just like to say that this forum is a good outlet for people who need to talk every now and again, especially to other CFers. And I will leave you by saying that you are acting like a jackass child.
hey everyone. Names Ryan. Im 15. I dont have CF. but im very good friends with Em. Ive known her for about a year and maby 8 months. Obviously I got to know quite a bit about CF. even did my genetics project on it. Now Im not claiming to be any sort of expert. far from it. I still have a lot to learn. But then again, Melissa and Mr/Mrs 43 it seems like you 2 still have alittle more to learn too. atleast about other CFers. As far as CF goes you 2 appear to have gotten it pretty easy. well others dont have it so easy. Cases can range from almost as healthy as people with out to you have no hope of living more than a year(not literally but you get the idea) . alot of people here also need some one that has the disease to maby help them out. get some one elses perspective on it that they couldnt get anywhere else. so personally i think any one of you has the right to complain here because you have people that know what your going through and can help more than someone with out can. so try being alittle more understanding. you seem to be lucky, but others arent as much. And please dont reply to me unless you have something that isnt childish and insulting to say to me or any one else. we are all entitled to our opinions. just dont be so harsh about it. That aside im happy that you 2 live so well. Congrats on making it to 43, and congrats on be so healthy at 30.
I'm sorry for starting such a mess. I wasn't trying to be rude or any thing. I was just trying to tell every one what works for me when I feel down about having or fighting CF. I didn't want to over step and make people mad. I apologize to all for my post. I was hoping that maybe I could give hope to a few that are having a hard time with there lungs being so low in FEV1. I didn't want to be blasted for what I said, and once again I'm sorry.Melissa 30