Heeeeeey all you CFers! I have a friend who's outlook is suffering pretty badly. I dunno what her health is in regard to percents, but Ive never seen her struggle with it aside from having a minor cough. Well, about a month and a half ago her boyfriend died, and with him, all of her plans for the future. She is getting/has gotten completely hopeless, and is basically giving up. From what Ive heard, the doctors say her life expectancy is somewhere around 25 years.I want to know about all of you. The Adults among CFers. The Lucky ones, the Rare ones, those who fight the good fight against an awesome opponent. As I understand it, some of you are lucky, all of you are rare, and most of you work hard for the time you werent expected to have.Any of you who are over 30, 35, 40, or older, or know someone who is, PLEASE post. I want something to give my young friend Hope. Please tell me your age, your secret to staying healthy so long, and how long the doctors said you had left when you were around 15. If you care to add how much longer you think, expect, or hope to have, that would be appreciated too.-------------------Dave21/m/SoCalCF SympathizerIf this thread reaches 10 replies, or 20, I askthat someone please email me a link to this threadat Boredomfiend@yahoo.com so that I can seethe results, because I may not make it back to this site on my own. Thank you very much. God bless
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Maximum Life Expectancy - please comment
- Thread starter anonymous
- Start date
hey now just because someone shows a 'minor cough' when you see them it doesnt mean they are fine. when i am out seeing my friends i look fine to them but as soon as i get home im a mess. they dont see any of the stuff i have to go through. only 1 friend has seen me at my worst and boy she was so upset at what was happening to me she cried. but at least she knows what i go through. other friends dont have a clue and wonder what im complaining bout when i say 'im sick today'. anyways, the oldest cf i personally knew died at about 45 i think? maybe older im not sure. i dont know what her secret was though. genes i guess, because she died a far while back and care in the 80's/early 90's in perth wasnt too crash hot.
serendipity730
New member
I know someone who is 36 w/CF.
AbsintheSorrow
New member
Seeing a minor cough doesn't really say anything about her condition. CFers can be pretty good about hiding it if we want to. But anyways...Well I'm only 20 right now, but I wanted to comment real quick. When I was born, in 1984, my parents were told I'd never graduate high school because I wouldn't live to see 18. I graduated in 02. I'm a college sophomore, and I'm going on 21 (in January) and doing pretty well. I mean I live with 3 or 4 infections permanently, but I expect to see at the very least 30. I mostly expect to see 40 too. So that's my two cents. <img src="i/expressions/rose.gif" border="0">
I know that appearances are deceiving, and Im not saying that she is fine. All im saying is that as far as outward symptoms, she only shows a minor cough.My sister has Chrones disease, another genetic-type disease except they are even less sure about carriers and causation. She would walk around with no more outward show than a hand on her stomach, when in fact she was in terrible pain and starving to death because she was unable to eat. I understand that my friend isnt fine. Believe me. I just want to help her.-----------------Dave21/m/SoCaliCF Sympathizer
AbsintheSorrow
New member
I know, I wasn't judging. Was just making a point in case you were unaware. <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/rose.gif" border="0">
Ok, here is my 2 cents worth of talk.... I have CF and was diagnosed at age 21, I am currently 48 and just doing fair. Been on disability for the past 8 years and I think that has been a big help in me staying alive. I do what I'm supposed to do, but I really think it's all in your genes of how severe you are. And here is one thing that really bugs me..... I don't consider myself LUCKY, I have cf and that stinks. Someone with NO cf is LUCKY!!!!
I know people in there 50s. One lady just got a transplant at 50 and is going strong now. I know several in there 40s and 30s with their own families. The lady in her 50s has her first grandchild even. So the life expectancies they give us are jsut guesses really. There are no excat age that says we will croak as soon as we turn that age. I hate it when they say "well its unlikly this child will live past 18" when the kid is only 2 or something to where they give an expectancy so far in the future they have no idea what will happen between thenn and the future. If that makes any sense. Anyway tell your friend to ignore what the docs tell her about her life expectancy because no one really knows for sure. And she is the one to decide what will happen in her life. She should make the best of it. Thats how you beat the odds. Even if they happen to be right its quality not guantity. So the question she has to ask her self is should i have fun and be happy for the time i have here, or should i be miserable and sad for the time i have, how ever long or short it maybe. We all have to ask that many times.AB
AbsintheSorrow
New member
To the 48 year old poster with CF... just wanted to put in a real quick comment. When CFers or non-CFers call you lucky, we are not meaning to offend, I'm sure. Obviously, no one with CF is lucky. But if you weren't diagnosed until 21, and you are currently 48, then you're doing better than most of us. So, sure, you're not lucky, but think of the 5 and 6 year old children who die from it. I think it's just a matter of comparison that you get called lucky, you know? Don't take it offensively... take it more as we're envious. <img src="i/expressions/rose.gif" border="0">
NoDayButToday
New member
I personally am 15, and are doing OK. The oldest CFer I personally knew was 41ish when they died. But I've heard of CFers who have grandchildren! If your friend is down about CF, maybe try to get a hold of the CF Roundtable newsletter (if it still exists?) It's a newsletter for adults with CF and has many people (w. CF) in their 30s and beyond who contribute... I don't read it, but have heard of it. Also, even though I'm not "lucky" to have CF, the fact that I wasn't expected to come home from the hospital as a baby makes me feel "lucky" for every single day I have. I refuse to live my life waiting for my death. But that's just me.
NoDayButToday
New member
I have to agree with Emily on that one. Someone I know with CF died this past week at 21, the age at which you were diagnosed... so if someone calls you lucky, they don't mean to insult you, or make you feel bad. You are just luckier than some of us others w/ CF.
Dave,I will be 30 in January I was diagnosed when I was 22 and if you want to give your friend some advice. The best way to take care of herself is to lead an active life. She needs to exercise and stay fit. For a lot of people (not all) CF effects the lungs, and I think everbody knows that the best way to take of your lungs is it to get cardiovasculour exercise. Since this is a friend of yours, try and help her stay active. Ask her to go for a brisk walk or go for a bike ride, If she can handle it go jogging or play tennis.Dave 29 w/cf
Hi,I'm 43 with CF. I'm doing fairly well. I have 2 children and I stay at home to take care of them and the household duties. I was diagnosed at 10 years old. My sister also had CF, but passed away when she was 19. I don't know why I'm doing as well as I am. I do know that drinking lots of water has helped me a lot. I started doing that in my early 20's and still do. I plan on being around to see my kids graduate from high school and hopefully get married. That's a long time because my youngest is only 6!!!I think your friend is grieving right now and it's going to take some time for her to get over her loss. Hopefully she will pull through and start fighting against CF again. Stay by her side and don't let her give up.Tammy 43wcf
Hi Dave, I am 39 years old and was diagnosed at 3 years old. My parents were told i wouldnt survive to see age 5. Your friend is going thru a terrible loss and its understandable that she would feel like giving up. Thank God she has a great friend like you that wants to help her in any way you can. <img src="i/expressions/face-icon-small-smile.gif" border="0"> My mother told me about 2 years ago that she felt i was cheated in life by having cf. I told her to let me get back to her on that because i wasnt sure exactly how i felt about it and didnt want to give her the wrong response. After thinking about it , i told her i was not cheated, i was blessed. 21 years ago a friend of mine died of cf at age 15.... 4 days before his 16th birthday. HE was cheated. I feel i am blessed, because i had hopes and dreams ,and got to accomplish them, i have a good family, and good friends. I may not have the options that perfectly healthy people do, but i make the most of what i can do. I thank God every day i am still here and able to do things. I love life !! Encourage your friend to try to stay positive, and live on to remember her boyfriend. He would not want her to give up. Try to get her active as soon as you can. Activity is very important to those of us with cf, and it may even help boost her spirits. A walk in a park would do wonders for her in many ways. I lived a long time worrying about death and being depressed about it, then watched perfectly healthy people go before me and came to realize, that God makes these decisions, not us, and not doctors. I hope you can get your friend out and about and as time goes by she may begin to heal and start having the desire to go on. She needs time to recover from her loss, and like i said, thank God she has a friend like you.. <img src="i/expressions/face-icon-small-smile.gif" border="0">~ Diane 39 cf / diabetes / b.cepacia
Hello. My name is Monique and I am 39 with CF and diabetes. I also have 4 of my own children. My oldest is going to be 12 and I have triplets who will turn 9 in 2 weeks. We have to take of ourselves and do what is expected of us to live a long life. When we do our part, our lives are in God's control if we live for him. I do believe that our genes play a big part of it. I've been healthy most of my life and worked most of it. I've been on disability for the past 7 years now. CF is a progressive disease, but how it progresses can have a lot to do with us.God bless you and I hope to talk to you all soon!Monique