Your opinions please!

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anonymous

New member
Hello all,

I am a first time mom to a happy, healthy, 10 month old boy who happens to have CF. So far, so great. He did have PA once, but we were lucky his doctor caught it early and eradicated it. My question is this: I try so hard not to worry about the future and focus on just raising a great kid. But I am curious, do you feel like there has been much progress with CF (such a drugs, therapies) than when you were a baby? And do you realistically think there will be a cure? WHen I say cure, I guess I mean something to make CF more like diabetes or something, where it can be managed and the whole "life expectancy" aspect will be gone. Is this just wishful thinking on my part? You guys have been dealing with CF way longer than we have, and I was just curious as to what you think the future holds for new babies with this.

Thanks for your time,
Carrie
mom to Sam wCF
 
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Diane

New member
Hi Carrie ,
Your son was born at a time where you will see vast improvments in cf care and maintenance. When i was a child and diagnosed with cf the life expectancy was maybe 12 or so (if even that). Each year it went up, and now it is up in the mid 30's. As for a "cure" no they wont find a "cure" , but i do firmly believe there will be a treatment that will be like insulin to a diabetic. Keep one important thing in mind about life expectancy.... The cf life expectancy is in the mid to high 30's for patients born with cf, which is wonderful considering that NO-ONE, healthy children included ,is guaranteed to make it to that age. It's sad to say, but not all children will live that long even if they are born perfectly healthy, so try not to dwell on the life expectancy thing too much. My parents were told i wouldnt live to 5 when i was diagnosed, and i can only imagine how horrible it must have been for them to have that fact to sit and dwell on. Enjoy every moment you have with your little bundle of joy . <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Emily65Roses

New member
When I was born, my parents were told I had a 50/50 chance of seeing past 18. I am now 22 (doesn't sound like much to most people, but I think it's awesome), and the average is much higher than it used to be. I also might add... that I am not 22 and dying. I still have 70% of my lung function, so I'm doing pretty damn well for a 22 year old. Pulmozyme, one of the main CF meds, wasn't even out of the market until I was 9 or 10, so I had no nebs for the first almost decade of my life.

Babies born now are doing even better than us old CF farts because they have all the technology and meds right from the beginning. I am one of the most realistic people you will ever come across (to where most people call me a big fat negative nancy), so if I'm telling you your kid has pretty good chances, then you can bet it's a pretty fair assessment. I'm not just making it nice and rosy for you.

Oh, I should say this... don't live your life worrying about life expectancy. It's fruitless and will waste your energy. Just look into things getting better for Sam, and that he lives a full (I don't mean necessarily to live to be 80, but to not miss out on anything) and happy life. I don't want you to hope to see life expectancy completely disappear and then not have it happen. It may not. My mom was expecting a cure the whole time I was growing up, because they always said it was "right around the corner." 17 years later, and we're still not around that corner. So don't hang your hopes on that kind of stuff, it's too unreliable. You can hope that he have a fairly normal life, though. School, a job, a wife (or husband), kids, etc. That's not out of reach. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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blackchameleon

New member
gday Carrie, i like most people here around my age were given a
fairly bleak future with regards to life expectancy, about 10 my
mum and dad were told. im now 35 and have two great boys aged 9
& 7. i feel the future is very bright for kids diagnosed today
with cf-- i look at the huge advancements in treatment over 30
years and increase in life expectancy and see no logical reason why
it will stop. my advice is to trust your gut maternal instincts
with your sons treatment and encourage as much regular sport as
possible. my parents chose to avoid any contact other than
necessary with the cf community and not live a cf life, maybe
denial but my results speak for themselves! another one of my firm
beliefs is that if you have cf and live in a major city with alot
of smog and pollution you are stuffing your chances of as healthy a
life as possible, i grew up on farms in fresh country air and the
city kids generally always were sicker and died earlier than us
country kids, providing of course to keep regular appointments with
a cf specialist, which for us meant driving 7 or 8 hours to Sydney
3 or 4 times a year. hope this is encouraging and by the way, NEVER
give up hope for a cure for cf, just dont focus on it! besides all
that, you  will possibly enjoy little Sam even more so now you
are aware of his lifes struggles, wring every single drop of joy
out of life each and every day is my tip! cheers, Blackchameleon
 
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Scarlett81

New member
Hi and Welcome

As many others have said, I too was born with a bleak life expectancy. I was DX at 2 years old. They said I wouldn't be 10, then when I was they said I wouldn't be 16, then when I was they said 20, now here I am-healthier than I've ever been! According to statistics, I'll not make it past 40 or so. But who knows what else will come out to help us? Yes I feel alot has come out to help us live longer. The drugs that have mostly helped me are Hypertonic Saline which I inhale, Pulmozyme, TOBI, (all inhale) and new IV antibiotics too.

Your child in very licky to have been born now!! He has a tremendously high chance at looking at a normal life expectancy with all the new things that are coming out, and what will comeout is his lifetime.

If I could give you one piece of advice it would be-the success of a patient with cf can very much be determined by their doctor and "cf team" caring for them. I can not stress enough hoe important I feel it is to be with a cf specilaist center. Of course there are many good pulmonologists, and good doctors. Some patients prefer that. But the bottom line is-usually cf centers have the newest information the soonest, the newest drugs, ect. Its alot of work to manage cf so you'll stay healthy and live long. Growing up, going to a cf center meant driving 2 hours to Philadelphia every few months. But it was worth it. I'm 23 and they said I woudl't be!

Best wishes to you, and use this site as a resource. You'll find lots of good info here.
 
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folione

New member
I'm a parent of a 3 year old boy with CF. We all find our own ways of coping with the worries so I won't tell you not to worry. But what I will tell you is that our son has been healthier in his 3 years than every single one of his playmates. I attribute it to sticking with his CF treatment routines from day-1, to vigilant handwashing/sanitation routines for our household, to our not being shy about telling other people to stop smoking or to wash their hands, and to his being a strong little guy.

It's hard to put the whole life-expectancy thing out of mind, but the thing that allows me to not fret about it is that the current number that gets quoted is based entirely on people who died and is a median. Half of the CF patients in the CF database are older than that number and alive at any one time. I like to think that being alive and doing the treatments and having a life are the important things to focus on.
 
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EnergyGal

New member
Hello Cf Mommy

I think you have received amazing advice. If you stick around and read every day here you will learn so much and eventually your mind will come to a better understanding of what CF is all about. We are all different in every aspect cf patient to CF parent. This is an invaluable website with very wise people who have been down the road that you are traveling on.
 
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Hughett

New member
I have to put a ditto on Risa's comment.  I am a new parent of
a almost 2 month old with CF.  This site has been so helpful
to my wife and I.  When we had questions all we had to do was
ask and we got lots of replies from these wonderful people.  I
am glad to meet you and hope all goes well with your little one.
 
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Jade

Guest
I was born in 78 and back then the meds were awful...threw up that liquid stuff every time. Later they put me on tablet meds which were far better. Every few years they seem to come out with something a little better. Nowadays with the net to do research and great drug improvements I'm confident you're child will have plenty of options later in life.

"<i>I try so hard not to worry about the future and focus on just raising a great kid"</i>
That's just as important as all the treatments combined.<img src="i/expressions/heart.gif" border="0">
 
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thefrogprincess

New member
Hi! And welcome to the board, I'm glad you found us.

I remember being a kid and watching on the news that they had found the CF gene and I remember thinking "Now we're on a roll!" What an exciting time we are in if you have to have CF. When the CF Foundation was started about 50 years ago most CF kids didn't live to go to elementary school. Now look at us! We're thriving, and living longer and longer. CF used to be thought of as a childhood disease, now adult clinics are popping up all over and they are making new discoveries all the time. With the advances in gene therapy and genetics I really feel that a cure is on the horizon, maybe not tomorrow, but I think that my living to see it is a real possibility.

My parents never bought in to the whole life expectancy thing much, I remember a doctor saying we'd be lucky to graduate high school. Now I am almost 25 and never even been hospitalized. The fact is, its just a number. I could be killed in a car accident tomorrow, or I could die an terribly old lady.
 
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izemmom

New member
This was a great thread! Thanks for posting your question Carrie! And thank you to all of you who responded. It is good advice - all of it!
 
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