I remember my pulmonologist always saying that after age 18 many CF patients hit a rapid decline. I'm almost 20, and while I haven't necessarily taken a huge hit as far as CF I've noticed that I am a tiny bit worse for wear than I was a few years ago. I'm just wondering when/how I'll start to go downhill. I know everyone is different etc etc but am wondering what the general consensus is around here. When did you notice a decline, or worsening of your CF? Can you describe it? How fast was the onset? How severe has it gotten in whatever period of time?
When did you start to decline?
- Thread starter SaraNoH
- Start date
Twistofchaos
New member
To me the 18 year thing sounds like a strange thing to say or atleast seriously outdated. We're all too different for that. Some will just stay reasonably healthy into their 40's while others need new lungs when they're 15.
Absolutely no point in getting hung up on any random numbers. It's like the life expectancy thing. It scares the hell out of people, does much more harm than good and in the end it's just completely meaningless for the individual.
But for me coincidentally ~18 was indeed an age where I went into decline. But it had more to do with getting to an age where CF was getting very confrontational, impossible to avoid, seeing what it would mean for my life and a crappy home situation. So I got severely depressed, started neglecting treatments, stopped eating right and dropped into the 40%'s in a relatively short time. And a little further down into the 30%'s in the years following. Took me till about 6 years ago to get to a point where I can say I grew mentally and physically strong enough to be able to put my decline to a halt and feel confident in who, what and where I am. But there are times I wish I could change the past. Who doesn't. So I'm working on it in my basement but I still need some parts.
Absolutely no point in getting hung up on any random numbers. It's like the life expectancy thing. It scares the hell out of people, does much more harm than good and in the end it's just completely meaningless for the individual.
But for me coincidentally ~18 was indeed an age where I went into decline. But it had more to do with getting to an age where CF was getting very confrontational, impossible to avoid, seeing what it would mean for my life and a crappy home situation. So I got severely depressed, started neglecting treatments, stopped eating right and dropped into the 40%'s in a relatively short time. And a little further down into the 30%'s in the years following. Took me till about 6 years ago to get to a point where I can say I grew mentally and physically strong enough to be able to put my decline to a halt and feel confident in who, what and where I am. But there are times I wish I could change the past. Who doesn't. So I'm working on it in my basement but I still need some parts.
CrisDopher
New member
Yeah, different courses for different horses. My first permanent drops in lung function didn't come until I was in grad school in my late 20's. They declined slowly and steadily after that, despite becoming a runner. Real decline has only been in the last three or four years and I'm now at 19% FEV1. I'm 41 and on the transplant list. Hoping to make it to 42 before I get so bad I'm at the top of the list and get new lungs. I feel I owe it to my family, and to the unknown poor soul who will be generously giving me the gift of life at the end of theirs, to keep on fighting for what lung function I can get and to stay active and otherwise healthy.
when you quit getting regular VIGOROUS exercise you will probably start to go downhill although it may take a while for you to realize it. You are still so young that it is a shame to have you worry about going down hill. Just live life to the fullest that you possibly can and you will be far ahead of most people.
beautifulsoul
Super Moderator
I agree with what the other people have said, it depends specifically on the person. There are thousands of CF mutations and many other factors involved in each individual. I've never heard of the "18 year old rapid decline" as a true known fact. Like twistofchaos mentioned, that seems a bit outdated to me. I thought I did hear/read something last year about the CF population being over 50% adults.
In my personal opinion, 18 is obviously when you're an official adult and no one can no longer force or tell you what to do, even for your health. (nagging or demanding parents;sometimes) I know some teenagers slack off treatments, meds or enzymes. Therefore, if you slack off for so long then it would make sense that your health would decline.
And then, of course many of us are thrown a series of unfortunate events for no reason at all. I was transplanted at the young age of 15.
In my personal opinion, 18 is obviously when you're an official adult and no one can no longer force or tell you what to do, even for your health. (nagging or demanding parents;sometimes) I know some teenagers slack off treatments, meds or enzymes. Therefore, if you slack off for so long then it would make sense that your health would decline.
And then, of course many of us are thrown a series of unfortunate events for no reason at all. I was transplanted at the young age of 15.
M
moxie1
Guest
What a ridiculous thing for a doctor to say to you. As everyone else has said, each patient is different and there are no hard and fast rules in cf.
Just stay compliant with your treatments, make sure you exercise and forget what the doctor told you!
Just stay compliant with your treatments, make sure you exercise and forget what the doctor told you!
Guys, I know. I know that every patient is different and that numbers mean nothing. Hell, I'm a huge advocate of the idea to screw the whole average life expectancy thing because it's an average and averages mean nothing in huge numbers. It's not like on my 18th birthday I said, "Well, guess shit will hit the fan now." I'm just wondering how everyone else is getting along. My/the doctors statement was just for a point of reference.
It is so hard to convey what you actually mean over the internet.... From now on I'm just going to ask questions point blank without any background info.
It is so hard to convey what you actually mean over the internet.... From now on I'm just going to ask questions point blank without any background info.
L
lifeisgood729
Guest
Sara, when I was in high school, I'd always been extremely healthy and knew very little about my disease, so I wrote a paper about it for a science class. I interviewed my doctor, and when he told me that once I cultured pseudomonas I could expect to be hospitalized at least once a year, I began to dread that day. A few years later, when I cultured pseudomonas in college, I thought for sure my life was over and the decline was starting. What a horrible feeling. Fast forward almost 30 years, and I've had a teaching career and I have a great family with my husband and 3 kids. Sure there have been times when my health is tough and I need IV treatments every few months. But then I've gone several years without IV. It was nothing like my doctor's prediction and nothing like what I feared was about to happen.
Like you said, you already know that everybody's course of disease is different. But living with the fear of decline is probably something most of us have in common. It's still something I struggle with, but realistically I know that the fear serves no good purpose. I find it's best to focus not on when the decline might happen, but how I live my days before that time.
Martha
45 w/CF, mom to 3 kids with no CF.
Like you said, you already know that everybody's course of disease is different. But living with the fear of decline is probably something most of us have in common. It's still something I struggle with, but realistically I know that the fear serves no good purpose. I find it's best to focus not on when the decline might happen, but how I live my days before that time.
Martha
45 w/CF, mom to 3 kids with no CF.
As previouly stated everyone is different. Exercise to the max. and being compliant with neb. rx has helped me; even when I don't feel like exercising I still exercise.
When doing neb. rx try to get as much mucous up and out as possible, do not rush through just to say that you have done your rx.
Have a great day!!
When doing neb. rx try to get as much mucous up and out as possible, do not rush through just to say that you have done your rx.
Have a great day!!
LookingforPeace
New member
Lifeisgood - I just want to say THANK you for your post. I'm having a difficult time right now, mentally. I feel paralyzed with fear of the future after losing my brother to CF. Your words were much needed.
lilmac1177
New member
ok so! shame on me that i do not exercise regularly, or even close to it, and for that i'm sure i will pay the price one way or the other. i know i could be MUCH healthier if i would exercise. that being said, i am 35 yo w/ baseline FEV1 of about 45%; weight about 105 (just hit triple digits for first time EVER in late 2012!); frequency of IV courses has been as much as three times per year down to once every year or two; diagnosed w/ CFRD in 2006; so far i've not had any kind of pneumothorax, lung collapse, or even so much as having to be on home O2; i did have my first (and only thus far) bronchoscopy and embolization in July 2011. i hope that's the basics you're asking for, if you want to know anything else just ask 
i believe i've done pretty well for myself so far but, again, i often wonder just HOW much healthier i would be if i would get on the exercise ball!
i believe i've done pretty well for myself so far but, again, i often wonder just HOW much healthier i would be if i would get on the exercise ball!
athletixbc
New member
I wasn't even diagnosed until I was 20, and I lived for several years after that without noticing much of a difference. My first decline severe enough to warrant an inpatient hospital stay was at age 27, and since then I've averaged about two inpatient hospital stays a year. I went on home oxygen and had to scale back on some of the sports I played when I was 33. I'm now 37 and I'm being considered for transplant soon, probably within the next two to three years. I believe I held things off until 27 because I was always very active, playing many sports and doing a ton of exercise in my youth and even into my 20's. Had I been more sedentary, I probably would have declined sooner.
azdesertrat
New member
I didn't really 'Hit The Wall' until I was around 39- almost 40.
When I did, it was a very rapid decline.
I went from working between 45 to 65 hrs. a week to not being able to work in around 1.5 years.
If I would have known I was going to live this long, I would have taken better care of myself!
Word to the wise: You're still young & in good shape. Please take care of your body.
It may not be much, but its all ya got!
You may go a lot longer than I did without 'Hitting The wall' if you take good care of yourself.
All our best to you in your fight....
When I did, it was a very rapid decline.
I went from working between 45 to 65 hrs. a week to not being able to work in around 1.5 years.
If I would have known I was going to live this long, I would have taken better care of myself!
Word to the wise: You're still young & in good shape. Please take care of your body.
It may not be much, but its all ya got!
You may go a lot longer than I did without 'Hitting The wall' if you take good care of yourself.
All our best to you in your fight....
JustaCFmom
New member
Go For It!
Oh, try pushing yourself a little bit and you may be surprised!
My kids are "atypical" but I see how much being active impacts those numbers! I made an excell file of my kids PFT results and that visual feedback is very encouraging. We can really impact our health for good (or for bad) if we want.
Good luck and take care.
Oh, try pushing yourself a little bit and you may be surprised! My kids are "atypical" but I see how much being active impacts those numbers! I made an excell file of my kids PFT results and that visual feedback is very encouraging. We can really impact our health for good (or for bad) if we want.
Good luck and take care.
ok so! shame on me that i do not exercise regularly, or even close to it, and for that i'm sure i will pay the price one way or the other. i know i could be MUCH healthier if i would exercise. that being said, i am 35 yo w/ baseline FEV1 of about 45%; weight about 105 (just hit triple digits for first time EVER in late 2012!); frequency of IV courses has been as much as three times per year down to once every year or two; diagnosed w/ CFRD in 2006; so far i've not had any kind of pneumothorax, lung collapse, or even so much as having to be on home O2; i did have my first (and only thus far) bronchoscopy and embolization in July 2011. i hope that's the basics you're asking for, if you want to know anything else just ask
i believe i've done pretty well for myself so far but, again, i often wonder just HOW much healthier i would be if i would get on the exercise ball!
My first and only (so far, thankfully) rapid decline came the first year I was out of college, so 22 years old. I was average 85% FVE1 in school and within one year of being in the workforce I had dropped to low mid 60% FEV1. I was incredibly active in sports and exercising all through high school and in college which kept me healthy. Going from an active lifestyle to working 50hrs a week in a high stress work environment and not exercising regularly took a toll on me. Fortunately my doctor was very candid with me and told me that if I kept it up I'd be dead in no time and she recommended that I quit my job. So I did. Now I work 35 hours a week in a relatively low stress environment and exercise regularly. I was never able to recover the lost lung function but at least I have maintained the low 60% FEV1 for 12 years now.