Life Without CF

[Lance2020x]

Life without CF? Yeah. I've thought about that.<br>
You know whats interesting? I've though about the fact of, with as
much as we take care of ourselves, and some of us, when we're
REALLY healthy have PFT's of a normal person. If we just woke up
without CF, would be be like superhumans? Aside from CF related
sickness, I NEVER get sick.<br>
<br>
I know exactly what you mean, and I also know what
<strong>Rutgersnyy</strong> means.<br>
When I'm healthy, I just kind of forget that I have CF. But then
somedays when I'm on inhalers and all kind of crap I just get
really, really worn out. I just start to get really tired of
medications.<br>
<br>
But I just have to figure, heck, there are SO many people worse off
than me. I've been dancing since I was 7 years old, and I'm more
physically fit than most non-CFers.<br>
<br>
But I do agree, I think that CFers are so far emotionally ahead of
most people who haven't faced the thought of death their whole
lives.<br>
Maybe so many other peoples problems DO seem trivial in comparison
to some of ours. But like I tell people who know about my CF (I
don't let many people know, I don't want to be looked at
differently). You may THINK that your problems are trivial to mine,
but what I've been through has trained me to be able to handle
more. So your problems are just as stressing as mine, becuase you
just haven't been through the same things. So your worse problems
are just different than mine, not less important.<br>
<br>
Okay sorry, it's late, I'm just typing out my thoughts. But I'm
afraid I've ended up babbling.<br>

 

[Wipeout]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

i think there is a big difference between 90% FEV1 and 25% FEV1....mindsets cant even possibly be the same</end quote></div>

Yes, I absolutely agree. The test of one's character comes about when adversity piles in.

It is nice to hear that Rutgersnyy has a positive outlook, but the declaration he/she is the antithesis of the first poster is an assertion that <i>may</i> be a bit insensitive or perhaps misses some of the nuance of the initial post. ihatecf SEEMED to be touching on some philosophical issues surrounding how one values their own life, and the health they have been given, as well as how retrospection changes this understanding. I did not read it as a particulary negative offering, rather as one of introspection.

For what it's worth (not much probably), when I was 23 I barely knew I had CF either. But I did know that there were MANY other children half my age that spent more time in the joint (hospital) than out, and that others my age were making very difficult decisions about their own death.

Having said all this, I DO hope the best for Rutgersnyy - may he/she indeed not die from CF. I have the same optimistic wish for all of the rest of us.

 

[Wipeout]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

i think there is a big difference between 90% FEV1 and 25% FEV1....mindsets cant even possibly be the same</end quote></div>

Yes, I absolutely agree. The test of one's character comes about when adversity piles in.

It is nice to hear that Rutgersnyy has a positive outlook, but the declaration he/she is the antithesis of the first poster is an assertion that <i>may</i> be a bit insensitive or perhaps misses some of the nuance of the initial post. ihatecf SEEMED to be touching on some philosophical issues surrounding how one values their own life, and the health they have been given, as well as how retrospection changes this understanding. I did not read it as a particulary negative offering, rather as one of introspection.

For what it's worth (not much probably), when I was 23 I barely knew I had CF either. But I did know that there were MANY other children half my age that spent more time in the joint (hospital) than out, and that others my age were making very difficult decisions about their own death.

Having said all this, I DO hope the best for Rutgersnyy - may he/she indeed not die from CF. I have the same optimistic wish for all of the rest of us.

 

[Wipeout]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

i think there is a big difference between 90% FEV1 and 25% FEV1....mindsets cant even possibly be the same</end quote></div>

Yes, I absolutely agree. The test of one's character comes about when adversity piles in.

It is nice to hear that Rutgersnyy has a positive outlook, but the declaration he/she is the antithesis of the first poster is an assertion that <i>may</i> be a bit insensitive or perhaps misses some of the nuance of the initial post. ihatecf SEEMED to be touching on some philosophical issues surrounding how one values their own life, and the health they have been given, as well as how retrospection changes this understanding. I did not read it as a particulary negative offering, rather as one of introspection.

For what it's worth (not much probably), when I was 23 I barely knew I had CF either. But I did know that there were MANY other children half my age that spent more time in the joint (hospital) than out, and that others my age were making very difficult decisions about their own death.

Having said all this, I DO hope the best for Rutgersnyy - may he/she indeed not die from CF. I have the same optimistic wish for all of the rest of us.

 

[anonymous]

Well, I was diagnosed at birth and never sick until I was 18 years old with a collapsed lung. The first pseudomonas infection was at 21. I never did a breathing treatment till I was 21 years old and only required enzymes and vitamins. Through high school I unloaded freight trucks by hand, rode a bicycle 30+ miles a day and lifted weights on a regular basis, and went to college. I rarely read posts on CF sites but do sometimes like to hear how other people cope. The post from the healthy guy reminds me of myself years ago. I used to not be able to understand how some CF patients always seemed down and quite honestly I thought they were not very dedicated to their health and that was the problem. However, in the past 3 years my eyes have, unfortunately, been opened up to what a cruel disease it can be and the devastation it can cause in a short amount of time.

I have been hospitalized at least 3 times a year for the past 10+ years and never really complained much, actually I was happy to go in and come out feeling so much better. However, the progression of the disease for me is turning into more hospitalizations with less than stellar results at the end on 2 weeks of aggressive therapy. I have had to quit working earlier this year and as of last week I am requiring oxygen most of the time. Truthfully, a transplant is coming soon probably. I am involved in pulmonary rehab and exercise as much as possible. I am not one to quit and will fight to the bitter end, but in defense of people that are having a hard time coping and seem depressed. They have every right to feel that way. Until your FEV1 drops below ~25% you cannot understand just how much pain can be caused when gasping for air.

This disease is a wild one because there are young, old, healthy, and extremely ill. It seems to affect us all a little different but CF has one viscious tool that none of us can escape which it TIME. Good luck to all and take care of yourselves.

 

[anonymous]

Well, I was diagnosed at birth and never sick until I was 18 years old with a collapsed lung. The first pseudomonas infection was at 21. I never did a breathing treatment till I was 21 years old and only required enzymes and vitamins. Through high school I unloaded freight trucks by hand, rode a bicycle 30+ miles a day and lifted weights on a regular basis, and went to college. I rarely read posts on CF sites but do sometimes like to hear how other people cope. The post from the healthy guy reminds me of myself years ago. I used to not be able to understand how some CF patients always seemed down and quite honestly I thought they were not very dedicated to their health and that was the problem. However, in the past 3 years my eyes have, unfortunately, been opened up to what a cruel disease it can be and the devastation it can cause in a short amount of time.

I have been hospitalized at least 3 times a year for the past 10+ years and never really complained much, actually I was happy to go in and come out feeling so much better. However, the progression of the disease for me is turning into more hospitalizations with less than stellar results at the end on 2 weeks of aggressive therapy. I have had to quit working earlier this year and as of last week I am requiring oxygen most of the time. Truthfully, a transplant is coming soon probably. I am involved in pulmonary rehab and exercise as much as possible. I am not one to quit and will fight to the bitter end, but in defense of people that are having a hard time coping and seem depressed. They have every right to feel that way. Until your FEV1 drops below ~25% you cannot understand just how much pain can be caused when gasping for air.

This disease is a wild one because there are young, old, healthy, and extremely ill. It seems to affect us all a little different but CF has one viscious tool that none of us can escape which it TIME. Good luck to all and take care of yourselves.

 

[anonymous]

Well, I was diagnosed at birth and never sick until I was 18 years old with a collapsed lung. The first pseudomonas infection was at 21. I never did a breathing treatment till I was 21 years old and only required enzymes and vitamins. Through high school I unloaded freight trucks by hand, rode a bicycle 30+ miles a day and lifted weights on a regular basis, and went to college. I rarely read posts on CF sites but do sometimes like to hear how other people cope. The post from the healthy guy reminds me of myself years ago. I used to not be able to understand how some CF patients always seemed down and quite honestly I thought they were not very dedicated to their health and that was the problem. However, in the past 3 years my eyes have, unfortunately, been opened up to what a cruel disease it can be and the devastation it can cause in a short amount of time.

I have been hospitalized at least 3 times a year for the past 10+ years and never really complained much, actually I was happy to go in and come out feeling so much better. However, the progression of the disease for me is turning into more hospitalizations with less than stellar results at the end on 2 weeks of aggressive therapy. I have had to quit working earlier this year and as of last week I am requiring oxygen most of the time. Truthfully, a transplant is coming soon probably. I am involved in pulmonary rehab and exercise as much as possible. I am not one to quit and will fight to the bitter end, but in defense of people that are having a hard time coping and seem depressed. They have every right to feel that way. Until your FEV1 drops below ~25% you cannot understand just how much pain can be caused when gasping for air.

This disease is a wild one because there are young, old, healthy, and extremely ill. It seems to affect us all a little different but CF has one viscious tool that none of us can escape which it TIME. Good luck to all and take care of yourselves.