CFers and hospital admissions

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anonymous

New member
Hi All,

I was wondering if any cfers were yet to have a hospital admission I am 27 years old my lung function is always 100% or more I was diagnosed with diabetes in 2002 which is well controlled. My doctor always says how lucky I am which kind of worries me in that I am on borrowed time until things go downhill whcih I am hoping they do not for a very long time!

My next appoinmtent I want to find out my gene mutation etc as I wonder if the mutation you have depends on severity of CF?

Does anyone know much about this. Is there website that lists all of the mutations etc

I live in Melbourne Australia too by the way.

Hope to hear from someone soon.

I am taking creon at the moment and tobi through nebuliser 4 weeks on 4 weeks off plus roaccutane tablets (acne drug)for acne but am nearly finished with that.)
 
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WinAce

New member
Hope you hear from someone, too. This isn't that common, however. From what I could tell last time I looked, there is no known association between specific CF mutation and severity of illness, so they're looking at modifier genes (unrelated ones) which might affect that, instead.

As an aside, IMO, anyone who tells a CF patient--regardless of the severity of their disease--how "lucky" they are should be taken out and slapped, repeatedly. A *doctor* who does it, who really should know better, should be slapped with a wet fish a few more times. Heh. I'd class it in the same area of ill-thought out comments as "You're so lucky that rapist didn't kill you" and "Good thing only <i>one</i> of your sons died in that car accident."
 
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EB24

New member
<blockquote>Quote<br><hr><i>As an aside, IMO, anyone who tells a CF patient--regardless of the severity of their disease--how "lucky" they are should be taken out and slapped, repeatedly. A *doctor* who does it, who really should know better, should be slapped with a wet fish a few more times. Heh. I'd class it in the same area of ill-thought out comments as "You're so lucky that rapist didn't kill you" and "Good thing only <i>one</i> of your sons died in that car accident."<hr></blockquote>


Although that is pretty harsh, I have to agree. Some people show no tact when talking about illness.
 
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anonymous

New member
I disagree, the doctor says she's lucky, she is! She's 27 with 100% lung function. She could be really ill by now and she's not. Winace you said yourself, that her situation isn't all that common amongst people with cf. Sure, she's not lucky in having the disease, but put in context she could be a whole lot worse off! Look on the bright side of things!

Sue.
 
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Purplelungs

New member
I have heard of several cfers not needing hospital visits for several years....thats why some dont get diagnosed till late in life. I wont say one way or the other what will happen because no one knows. Some go down slowly from the start. Some dont have problems at all then start going down slowly. Some dont have problems and then they get really sick from a virus or really anything and go down hill pretty fast. Its such a wide range of things that can happen. The best thing to do is keep up what your doing to keep your self healthy....enjoy everyday because you dont know the future.

About winaces comment it depends on how you take it. If you take it yes she has cf and yes she is lucky to not have problems except diabetes so far. Or I think the way winace took it was like....well real luck would be not having cf at all. *shurg* it just depends on how you take the statement, both are right.
 
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S

New member
i feel lucky for the lack of severity of my cf, there is nothing wrong with feeling that way. i don't have the digestion issues, have had about a dozen sinus surgeries, but haven't had any problems now for 6 or 7 years, am in the hospital a few times a year, etc. i shouldn't feel lucky knowing how much worse it could be? whatever!
 
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johnstockton

New member
thanks to everyone who posted it is appreciated I am a male by the way nota female. I took the docs comments into a positive light and wasnt offended at all but points and opinions taken from all sides

thanks to all for replying, this is a really inforamtive site for someone like me who deos not know or have nay relationships with other cf'ers.

thanks again
 
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johnstockton

New member
thanks to everyone who posted it is appreciated I am a male by the way not a female. I took the docs comments into a positive light and wasnt offended at all but points and opinions taken from all sides

thanks to all for replying, this is a really informative site for someone like me who does not know or have nay relationships with other cf'ers.

thanks again
apologies for posting twice too!!!
 
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stevehof

New member
I'm with WinAce on the point of being told I that I'm "Lucky" I'm 57 years old and even though my FEV1 is still a decent 55%, I haven't felt receptive to being told that I'm lucky concerning my CF at anytime in my life. Here's the story I tell the hapless doctor, RT or nurse who, with all good intentions I'm sure, tells me I'm a lucky CF'r.

Doc, I'm stuck down in this flooding river of sh-t. The sh-t is currently only up to my waist but some of my friends are up to their necks and many others have drowned already. There is really nothing I can do to save any of my friends or myself for that matter. I'm stuck here and the sh-t is always rising in flood. And you, doctor, are up safely on the bank of the river telling me how lucky I am..:^)
 
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BaylorCrew07

New member
It seems as though this thread as kind of wrapped up, but I thought I'd throw in my 2 cents anyway. <img src="i/expressions/face-icon-small-smile.gif" border="0"> As far as gene mutations, I haven't found anything directly correlating mutations to the severity of the disease; however, on my genetics report it says that one of my mutations is a known "mild mutation" or something to that effect. I can't remember the exact wording; sry, but I do know that it includes the word mild. I was diagnosed late (age 20) and also have not had digestive problems; and finally to answer your question - no hospital admissions here as of yet.

Debra
 
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WinAce

New member
Stevehof... I was actually thinking of that exact analogy, which I'd read somewhere before (possibly this very board), when I wrote what I did! Did you invent it, or find it elsewhere, before, and say "Hah, that's great!" ? Kudos! <img src="i/expressions/face-icon-small-happy.gif" border="0">

Of course, I wouldn't really slap anyone who said a person with CF was "lucky." For one thing, I don't carry around a wet fish, most of the time. I would be strongly tempted to encourage them not to say it in future, though. While potentially technically true, someone healthy saying it betrays a marvellous lack of tact. It's like an obese Westerner commenting how those living in poverty are "comparatively well-fed" compared to their equivalents in third-world countries: Technically true, but stupid to point out nevertheless.
 
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stevehof

New member
WinAce, I am the original author of the 'River or lake of Sh-t "Lucky" CF'r analogy. I first posted it on 'Cystic List' which was around 4-8? years ago. I don't know if that forum is still active or not. Due to conflicts between members, there was a split and another forum was started at 'ConCol' or some similarly spelled name. I quit posting to CF forums after all that drama...:^)
 
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Justyoda739

New member
Hey, I'm new to this. I'am an 18yr old male that has Cf, of course. When I was little, I was in and outta the hospital up until I was 3. After that,I never had a symptom of CF. I was fine up until I was 16. Ever since that I was in the hospital 4 times. The last time I was admitted was last November. I had my G-Tube removed a day ago, and I'm wondering if my health will go down hill from here? I mean ever since being admitted to the hospital the first time in 13 yrs, I feel like my body is kinda dying off, because I noticed I couldn't do anything like I used to anymore. Like run a mile without stopping, now It's like I can't even run a quarter of a mile w/o stopping, and that's even after I came outta the hospital, and I wuz all cleared up? I don't get it nemore. I have a girlfriend that I love with all my heart, and I want to marry when I get older. I want to spend every waking moment with her, but I dunno if I'll live long enough to marry her. I would like to kno if my health is gonna go downhill from here? Please if anyone knows how I am feeling please comment. Thank you all for listening to what I have to say tonight.

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

New member
Doesn't sound good, Justyoda....

But take heart in the important things. <a target=new class=ftalternatingbarlinklarge href="http://users.rcn.com/rostmd/winace/poetry/playwright_view.htm">Like love</a>, which everyone should find at least once. Don't let illness hold you back from marrying or doing anything else you can and want to, within reason of course. Also, don't give a damn about statistics, or fears, if at all possible (no one could blame you for having them, after all). If it's in any way under your control, think about it, though--you may as well live under the assumption that you're going to live for a long time, without a steep decline. The worst thing that could happen is finding out you won't... deal with that, if it occurs (there might still be options). And having a positive attitude will increase your chances. Whereas, if you conclude you're hosed, you'll lower your chances of survival just by being sad more than you absolutely need to be.

I know how you're feeling. You have my sympathies. :\
 
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anonymous

New member
Our daughter's physician told us there is some association between genetic mutations and severity of disease with the exception of pulmonary status. States that you are considered to have a "mild" case only if you are pancreatic sufficient. So far studies have not shown a correlation between mutations and pulmonary severity. Here are a couple of sites you may want to check out that list some of the mutations considered to be severe (i.e. delta F508) and why.

www.childsdoc.org/fall97/cf/cf.asp
www.lch.ucl.ac.uk/cgms/cfgtp00.htm
www.utoronto.ca/kids/cystic.htm
 
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anonymous

New member
Hi thanks for that info I will check out those sites when i get the time that way I can prepare for my 101 questions at my next doctor appointment

thanks again from downunder!!!
 
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