My name is Annie and I am 17 years old. I have both cystic fibrosis and cystic fibrosis related diabetes. Tonight I was reading about CF just to educate myself and I read that the average life span for someone with CF is 32. When I read this I imidatly started to cry. I know I should have already known that but it came as a big shock. If that is true that means I only have 15 years left to live. I don't mean to depress but right now I am looking for any piece of hope that will make me feel better. I want to talk to adults who deal with CF every day because I am becoming one and I am scared for the future. Please help. Write back hear or you can e-mail me at Annie_Opatz@yahoo.comThank you so much for even taking the time to read this, I wish nothing but love and the best for you all, -Annie Opatz, Marin County, CA<img src="i/expressions/face-icon-small-confused.gif" border="0">
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- Thread starter anonymous
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Annie, my husband's 44 - hang in there! Don't let statistics scare you - there was a woman who lived in her 70's. We've met a man in his 60's. There are several people on here in their 40's - and this is just one message board. Let it motivate you to take care of yourself, even when you don't feel like it. Let your situation give you a mature perspective on what life is all about, what is truly important. Live your life to the fullest, and if CF info bothers you, only read it so often, and be glad for all the research and information - you are young enough that you'll see a lot of the research that goes on today really make a difference in your life .I'll pray for you today to have peace.Take care.
Hey Annie..Dont let stats get you down. Everyone with this disease is so different. I also know several CFers who are older than me. I am a 30 yr old female with it...as well as CF related diabetes...and other probs also related. You just have to be stronger than the disease. There is also a CF chat...that is great when you need to talk. If you would like the link I would be more than happy to give it to you. Stay strong...think positive! Take care and God Bless!Dea
averages mean nothing!!!! theres a chance that no one with CF has ever actually dropped dead at bang on 32 years old <img src="i/expressions/face-icon-small-wink.gif" border="0">realising your own mortality is a frightening thing, but the main thing is to look at it realistically. if you are 30 and doing well, theres no reason why in 5 years time you will still be loving life! i myself am having a few problems, and have a low FEV1 (35%) so have to be realistic and see that i am on a thin line and i need to take care of myself, or i could be in trouble very quickly. but nothing is set in stone. try not to waste time estimating how long youve got, enjoy the fact that you have now!! i know it sounds a lot easier than it is and believe me we all think about death! but dont waste time dwelling on it <img src="i/expressions/face-icon-small-smile.gif" border="0"> all the best.
Hi,I´m living in Germany,female, 41 years old and still alive...I go on vacation 2times a year, still have a fulltime job and hope to go on for some years more!Don´t waste your time with depressions, just live and try to realize as many of your dreams as possible, I think that´s the best way.Happy new year and good luckUli
hey,That number is scary but it is ONLY an average. I know a woman in her 60's with CF who has a son in his late 30's with CF. She has many relatives in their 60's and 70's with CF too! I also know a man in his 70's. there was a woman who used to post here who wasn't even diagnosed until she was in her 50's. That number has been supposed by many to be low because it is from the CFF who only takes their numbers from CF centers. There are a lot of OLDER People with CF who choose not to go to CF centers and just see regular pulmo docs. Really, 32 is just a number. A lot has to do with your mutations and how well you care for yourself. Take care and keep up with your treatments!Andrea
Hello Annie, I am a 32 year old woman who was just diagnosed with CF in September of 03. Of course this came as a shock to me. I too read the stats and saw the life expectancy and it scared me. Then I went to my first appointment with my CF team. They are great! Those stats are just that... stats... I have already met lots of people older than I who have CF. Keep you chin up kiddo! Everyone one with this disease is different. I'll keep you in my prayers. Try not to worry, I'm sure you will be fine.
hi my name is kerrie. i am studying CF as part of my college course - Diploma in Child Care. I was just wondering if there were any activities that you were unable to do. If so, did your school tutors adapt them so that you wasnt discluded?? I no that I havent got CF but i know how stressful life can be as i like to study these sort of things in depth, and plus i volunteer for MENCAP. I dont no if you have heard of them, if not its where i along with approx 40 other students care for children from 7years up to 18 years who have various disabilities - both mental and physical, and some children have CF. So i do know quite alot about it! I know this is easy for me to say, but make the most of your life, go out and do all those things you have always wanted to do, do it like ur fighting against CF and that you are going to win!! You have all my support in life and i hope all goes well for you!! Well if you or anyone else who has read this can help me then please get back to me by mailing me at: kerriewalpole85@aol.com. Thanx
Annie - my husband lived to 44 with CF, diabetes and several other problems. He lived a very active, full life because of his positive attitude, will to live and good sense of humor. My sister-in-law is 45 and still doing well. She also has a very positive outlook on life. You are young and will see advances and hopefully a cure in your lifetime.
Hi Annie and everyone. A little math lesson (groans from the audience): According to the CF Foundation website, the MEDIAN (not the average) life expectancy for CF is 33.4 years. All that figure means is that half of the CF population die before they are 33.4 (but it could be at 2, 5, 7, 19, 32, whatever) and that half die after they are 33.4 (for example at 34, 35, 65, 55, 75, etc). This median tells us nothing about how old they were when they died. Statistics are very misleading and they don't always give us a clear picture.I am 39 and still chugging away!!!!!!I get depressed thinking about my mortality, too; I think it's just one of those issues we must learn to deal with, not pretend it's not there and not acknowledge or repress it. I didn't think about these things till I was in my 30s, and wish very much that I had grappled with them in my teens and 20s as you will be able to do. Sometimes it can take a long time to really come to terms with this reality - of our eventual mortality - and I think this acceptance is a first step in understanding why its so important to take care of our health now.-Laura, California
HI,My name is Misty and I have a son who is 2 and was diagnosed with CF at 3mo of age. At first I was very depressed and sad after hearing the life exspectantcy. But talking with the Cf nurse and Doc's at Cardinal Glennon Children's Hospital I have felt alot better they give me hope a lot of hope and they are very helpful and caring. I call then alot ( and I do mean alot) just to ask questions and I thinks thats great that they know so much and are so helpful. So I guess what I am trying to say is Hang in there we all have are bad days. Just remember that if we get depressed and give up we are letting the disease win. Email me at anytime.Take care and God BlessMisty stags406@ctnet.net<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/light.gif" border="0"><img src="i/expressions/lips.gif" border="0"><img src="i/expressions/face-icon-small-mad.gif" border="0"><img src="i/expressions/moon.gif" border="0"><img src="i/expressions/musicnote.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/rose.gif" border="0">
Hey AnnieMy name is michelle and i lost my brother to cystic fribrosis in april of last year. I encourage you to not be discouraged by the statistics. please please keep healthy this can help you alot. My brother spent alot of the last year of his life in hospital and during this time he wrote poerty about his life with cf. I dont have a copy of the poem on me as i am away from home just now but i will send you a copy. Please please keep im touch i will be praying for god to bless you with good health. my email address is chelle40683@yahoo.comtake care for now love michelle
I am in the same boat as you! Listen. I believe this. The expectancy 10 years ago was alot lower. The expactancy will grow as you continue to live. By the time you are 26, It could be 47 and so on. Alos to consider, the science world is growing smarter with computers and medicine. Breakthroughs are happening and they are moving closer to a cure every day. I am 18 with CF and cf related diabetes. I believe God will help us. I do not accept the desease. I WILL DEFEAT IT. I try to promise myself to exercise to overcome cf. at 14,15 years old, My doctor said, when i was at 35% lung capacity, that i would not get to 50% again. I took the summer biking and rolerblading. My lungs got to 60%! Only you know what you are capible of. Not the doctors. If you want to live to 60,70 then do it. Nobody is stopping you unless you listen to doctors and statictics. If you listen to them about dieing early then you dont have hope. I am in class right now and i have to go. E-Mail me at andieollie@hotmail.com or is it andieollie@yahoo.com. Not sure. try both. bye.
Hello!my name is Diana and i am from Romania,I have cf diabetes.I was diagnosed at 7 years and I have been well until 4 years ago wen I went in hospital for my first IV treatment wich ended up with me having an anafilactic shock,I`ve lost conciosnes and collapsed this went on for 2half an hour unttil I was brought back to life.Since then I have never been the same,I am scared of everything and especially of IV treatment.I have an infection right now and in case it needs IV treatment I am terrified of going into hospital and i can not control my fears,from that very brave girl not frightend of a anything I have awalking fear barometer and I am driving my self and my mum crazy.I really dont know what to do! If any one has been through this please give some advice,I will be very grateful! Wish you all lots of HEALTH!U
Hey Annie,My doctor's have told me that if you take care of yourself, do meds and therapies and work on weight gain and sustaining the weight that I should live past the median life expectancy. I have 75-80 % lung function right now and I'm 19 yrs. old and was preliminarily diagnosed at 10 days old due to intestinal blockage, formally diagnosed at 3 months after sweat test. Yea mortality is a frightening thing to realise, but it provided me with an insight in High School that others mny age didn't. The normal, cocky, I'm an invincible teenager and I was able to see things clearly and for what they were. Also if your a religious person, like myself, than you have a God you believe in to fall back on when you are depressed about your human mortality. I'll admit its hard to live life to the fullest each day when your know that you will die at an age possibly younger than your peers but just try to take advantage of your life now and always know there is hope out there.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Hello!my name is Diana and i am from Romania,I have cf diabetes.I was diagnosed at 7 years and I have been well until 4 years ago wen I went in hospital for my first IV treatment wich ended up with me having an anafilactic shock,I`ve lost conciosnes and collapsed this went on for 2half an hour unttil I was brought back to life.Since then I have never been the same,I am scared of everything and especially of IV treatment.I have an infection right now and in case it needs IV treatment I am terrified of going into hospital and i can not control my fears,from that very brave girl not frightend of a anything I have awalking fear barometer and I am driving my self and my mum crazy.I really dont know what to do! If any one has been through this please give some advice,I will be very grateful! Wish you all lots of HEALTH!U<hr></blockquote>Hi Diana, I wanted to let you know .... i know the fear you are talking about. I had a very bad experience with hemoptysis a year and a 1/2 ago, and it left me with panic attacks due to post traumatic stress. ( which is what it sounds like you have) My doctor put me on Zoloft and it has helped GREATLY . Going thru a bad experience like you have makes things very hard for you, because eventually you will probably have to go on iv antibiotics at some point in your life. You would benefit getting some type of help now , before you have to go on iv's. Talk to your doctor about it. It may make a world of difference in your life. good luck <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane
Annie, try to look towards the future as something promising. When I was diagnosed with CF at 18 months, my parents were given a life expectancy of my late teens. I am now 31 and going strong. You've already reached that mark as well and I'm sure you will make it alot longer. It's all on how you look at life and how you take care of yourself. These days, I am still playing ice hockey as I have since I was 4 years old as well as going to the gym 3 days a week and going on vacation as often as I can with my wife of 8 years. My brother, who also has CF and is going to be 29 at the end of the month, also plays hockey. We have been always been very active in sports and excercise. Our doctor's have continued to encouraged us to keep it up as it will only help keep our lungs as healthy as they can be. Like everyone else has seemed to have mentioned, these stats are exactly what they are, STATS. Don't look at them as though as soon as you hit the age of 30, that thats the end. Take your life one day at a time and live it to the fullest. I know its easier said than done and I myself still think about it alot as well. Its part of having a disease like this, knowing that one day it may take your life from you. You're young and you still have a long life ahead of you.SMG31 y/o male w/CF from RI
i remember when i was about 15, i saw a "video" thingy about CF on tv. this beautiful young woman [who has CF] was talking about life expectancy. she said that "when i was 4 years old, life expectancy was 5 years. when i was 15, it was 16. when i was 20, it was 21. now i'm 27, and life expectancy is 28. i'm always one year behind and i know i'll always be". something like that, the message of course was, the life expectancy keeps growing.by the time your reach age 32, it would be 60. by the time you reach 60, it would be 120, the age of moses <img src="i/expressions/face-icon-small-smile.gif" border="0"> Lois, 21, CF, Israelboys_dont_cry_1982@yahoo.com