never get sick

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vance

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">

I am thirty years old and have CF. I have never met anyone else with this condition. Lately I have been reading stories about all of the different ailments that those with CF have and can get. I never get sick, except for a cold every now and then. The only medication that I take are digestive enzymes. Am I an excepton to the rule??????
 
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JazzysMom

New member
Yes you are the exception & a younger age would not allow many of the problems to arise yet. I am glad to hear you are doing so well (although I will admit a part of me is envious) & I wish that continues for a long time!
 
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Diane

New member
Vance, all i can say is enjoy it while you got it !! I used to be like that, till i was about 32. Then Cepacia found its ugly way in. You are very lucky, i hope you know that and cherish every second of it <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
Geeeeeeezzzzz i am sooo envious and wish i were still like you.
 
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anonymous

New member
Vance
Do you happen to know what mutations you have? Maybe your mutations are known for not having much lung involvement? I don't know if there is such a thing, but am a bit curious.
 
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65rosessamurai

Guest
Hi Vance, Welcome to the Forum.

Just wanted to let you know, you're not the only one with the exceptions to the rule, but a rare species, just as I. I'm a 40 year old male with CF, and live in Japan. I've actually gone about 12 years without enzymes (mostly cause the ex suckered me in to beliving what I was taking was an equivalent--I couldn't read the label!)

For a long time, I was able to keep my health up, but fear it is slowly catching up to me, unless I can find out what it was keeping my lungs healthy. My digestive system had been a problem off and on, and as a child, I did have frequent lung infections, but was only admitted for the problem at the age of 18, probably because the oral antibiotics had become too resistive, and they needed an antibiotic that would really "zap" the "buggers".

My opinion is that as long as you can maintain your health and keep your lungs active, you may go on a long time before any maintanence is needed. But, don't ignore your health! (sometimes having that mild of cf has some cf'rs question the diagnosis, but I'm sure, like me, you've got all the sympoms.)

Good luck, and I'll be seeing you on the forum!

(P.S. for those wondering what my mutations are, I was in Japan when they discovered the gene, so I am unable to get a gene test, as long as I'm living in Japan.)
 
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anonymous

New member
I'd say you are an exception. But hey don't worry about it and enjoy it!

My lung function is still good and all but I do have a lot of problems...sometimes I can go 5 or 6 months with no infection flareups or antibiotics and other times like lately I spend more time on antibiotics than off. I've probably spent atleast two months on either Levaquin or Cipro since late summer.
 
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anonymous

New member
Hi Vance
You are an exception, but there are others. I am 28 and I have never been "sick" either - as in needing hospitalization or tune-ups. Just the random cold or sinus infection. I take enzymes and use an inhaler twice a day and that's it. I also have one healthy 6 year old and another on the way - but what I've learned from coming to this site is that you can't be too grateful for your good health. A lot of people's health does change with age - but if you're made it to 30 healthy you're already ahead of the game. My uncle has CF and is still doing great at 53 (he did have a tx about 7 years a go - but to make it to 45 without needed one was pretty good). Also, I don't remember both of my mutations, I know I have one mutation of Delta f508 - the common Cf gene, but the other I was told, though a known mutation, is know for milder cases - so you might look into finding out your mutations just to see if genetics is whats helping keep you healthy.
 
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thelizardqueen

New member
I'm in the same boat as you vance for the most part. I've only ever had two hospital stays for my lungs in my life. Once when I was 16 for a lung infection, and 3 years ago for an embolization. I only take digestive enzymes along with my vitamins. I have CFRD - but that has nothing to do with my lungs. I'm 24 years old, and I get the odd cold once and awhile. I've never taken sulfa based drugs - which I've been told are the "big gun" medications. I'm perfectly fine with taking Tobi once and awhile when I do get sick. So I know that I am an exception to the rule. My oxygen levels are usually 97-99, my pfts are usually around 87%. I consider myself to be very healthy for the most part. And very lucky.
 
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anonymous

New member
My daughter is 20 with CF and battled with a lot of Staph infections until about 13 when we found that her heart was functioning at 29%. She was put on heart meds and within a year stopped getting infections. Since then she's had Pseudomonas once and very few infections, and was last hospitalized when she was 14. Now all she take are enzymes and asthma meds.

It has just been myself and her since she was 4 and I've never fussed about germs, friends etc. without being reckless. When she was at school we had to walk 3 km to school and back come rain or sunshine. Her moto is: believe that you are stronger than the CF.

Her half/cousin also became so well at the age of 18 that she didn't need enzymes and thought she didn't have CF at all (even though a blood test had been done!). Then she started smoking and living a very rough life, and ended up dying at 21.

Hope you stay well for a long, long time.

Joanne - mom of Monique 20wcf - South Africa
 
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JazzysMom

New member
Joanne: Are you originally from South Africa? I cant remember if you addressed this ?? in the past or not so please forgive me if you did.
 
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anonymous

New member
Hi Melissa

Yes I am from and reside in South Africa. Things are a lot different for us here, the Public health system doesn't provide for expensive meds like Tobi and very seldom have place in the hospital for admissions. Unless you can afford the top of the range health insurance which will pay for expensive treatments. My best freind at the clinic is an African, her daughter is 12wcf but really battles, she also has very little time to give physio because she leaves for work at 5.00am and returns home at 6.30pm(she's also a single parent).

great to chat
keep well

Joanne, mom of Monique 20wcf
 
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Cutecurlz

Guest
I am a 37 yr old female with CF, and I too never get sick, except for the odd cold and I too only take my enzymes. so you are not the only one.
 
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anonymous

New member
Hey Vance. ME TOO! I'm a 23 year old female, only taking enzymes, and I also seldom get sick. The "average" adult gets sick twice a year, and I'm holding up at about once a year. I think it's very odd. My PFT's aren't terrific, and I cough like the dickens, but I never seem to get sick. Weird isn't it?
 
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