Don't wait on Death

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littledebbie

New member
I love it, you are such the minority and you just totally gloss over that fact. It seems kind of easy to have such a positive" screw the predicitions" attitude when you are in your position. It's realistic planning and priotizing. Not a useless self centered pitty party for the morbidly inclined.

Facts are facts i have Cf - it's bad - I'm dying too dang young. Sometimes i want to talk about it, sometimes I have questions, people on here can relate...usually. Do we talk about it this much out in the world ...probably not, healthy people are rather uncomfortable with the death topic. So let us have this space with out the "rah rah cheer up little bucko, you might not die" speech. I am dying maybe not today maybe not tomorrow but eventually and I have to think about it becasue it does influence some of my decisions, that is reality. You are older than i will probably be although I'm prepared to be alive at your age if I'm so blessed, I am happy for you but please, I don't want to put on a happy face here and act like if I believe in fairies and clap my hands everything will be alright...it won't

Also, sometimes i think it's been my very awareness of my death that has caused me to appreciate my life so much, so if they go hand in hand for me than I will continue to think about my death.
 
L

littledebbie

New member
I love it, you are such the minority and you just totally gloss over that fact. It seems kind of easy to have such a positive" screw the predicitions" attitude when you are in your position. It's realistic planning and priotizing. Not a useless self centered pitty party for the morbidly inclined.

Facts are facts i have Cf - it's bad - I'm dying too dang young. Sometimes i want to talk about it, sometimes I have questions, people on here can relate...usually. Do we talk about it this much out in the world ...probably not, healthy people are rather uncomfortable with the death topic. So let us have this space with out the "rah rah cheer up little bucko, you might not die" speech. I am dying maybe not today maybe not tomorrow but eventually and I have to think about it becasue it does influence some of my decisions, that is reality. You are older than i will probably be although I'm prepared to be alive at your age if I'm so blessed, I am happy for you but please, I don't want to put on a happy face here and act like if I believe in fairies and clap my hands everything will be alright...it won't

Also, sometimes i think it's been my very awareness of my death that has caused me to appreciate my life so much, so if they go hand in hand for me than I will continue to think about my death.
 
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littledebbie

New member
well I'm 26, 5'1, 94lbs and my PFT's are in the 20% range. Should I start planning for my retirement? Investing in 20 year stocks? Planning my 50th b-day. Signing a home loan for 30 years? Or should i make sure my family knows my wishes about my funeral? Make sure dr.s have a copy of my DNR? There are real things to take care of, I can't stick my head in the sand and pretend this isn't happening. I'm an adult and this is happening to me i have things to take care of decisions to make. rah rah!
 
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littledebbie

New member
well I'm 26, 5'1, 94lbs and my PFT's are in the 20% range. Should I start planning for my retirement? Investing in 20 year stocks? Planning my 50th b-day. Signing a home loan for 30 years? Or should i make sure my family knows my wishes about my funeral? Make sure dr.s have a copy of my DNR? There are real things to take care of, I can't stick my head in the sand and pretend this isn't happening. I'm an adult and this is happening to me i have things to take care of decisions to make. rah rah!
 
A

anonymous

New member
I think the thing about the average age of death thing is that it is just statistics.

I mean, what do they do? Look over a 50 year period (1955-2005?), take the number of those diagnosed with CF and the number who died, age of death, and work the numbers. But the ability to diagnosis and the treatment options have changed dramatically in those 50 years. Folks are diagnosed now with CF who never would have been diagnosed before (thinking about my husband's grandmother who died in her 20's of "asthma" after being ill forever). TOBI and the vest have made an enormous difference for those with pseudomonas, etc.

Seems like in the last 50 years, CF has gone from a progressive terminal illness to a progressive chronic illness. Seems like some of you are "walking point" and will be the frist with CF to bounce grandchildren on your knee.

My husband's generation of folks with Marfan Syndrome was the first generation to become Marfan's grandparents. Surgeries, antibiotics, other stuff just kept coming on along so that the "average age of death" just kept moving just a tad ahead of his age. That always sort of weirded him out, but finally all he could do was live life to the fullest anf not waste a moment(which was his instinct anyway).

Which isn't to say that he didn't wonder about HOW he might die of Marfan's and try to find that out - to plan for last few years if nothing else. But finding out doesn't really help you plan. No one knows exactly what will get them and when. As I said in an earlier post. One day he was working the parallel bars- PFTs were excellent for him. The next day he had sepsis that they couldn't roll back.

Carpe diem!
Sieze the Day!!

-LisaV
 
A

anonymous

New member
I think the thing about the average age of death thing is that it is just statistics.

I mean, what do they do? Look over a 50 year period (1955-2005?), take the number of those diagnosed with CF and the number who died, age of death, and work the numbers. But the ability to diagnosis and the treatment options have changed dramatically in those 50 years. Folks are diagnosed now with CF who never would have been diagnosed before (thinking about my husband's grandmother who died in her 20's of "asthma" after being ill forever). TOBI and the vest have made an enormous difference for those with pseudomonas, etc.

Seems like in the last 50 years, CF has gone from a progressive terminal illness to a progressive chronic illness. Seems like some of you are "walking point" and will be the frist with CF to bounce grandchildren on your knee.

My husband's generation of folks with Marfan Syndrome was the first generation to become Marfan's grandparents. Surgeries, antibiotics, other stuff just kept coming on along so that the "average age of death" just kept moving just a tad ahead of his age. That always sort of weirded him out, but finally all he could do was live life to the fullest anf not waste a moment(which was his instinct anyway).

Which isn't to say that he didn't wonder about HOW he might die of Marfan's and try to find that out - to plan for last few years if nothing else. But finding out doesn't really help you plan. No one knows exactly what will get them and when. As I said in an earlier post. One day he was working the parallel bars- PFTs were excellent for him. The next day he had sepsis that they couldn't roll back.

Carpe diem!
Sieze the Day!!

-LisaV
 
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JBUCCA

New member
brad, you inspire me too, i think what you wrote was great,,, i also see alot of negativity of here sometimes but i guess people have to vent to someone!!! im not worried about death, everyday is a blessing and im not gonna dwell of dying ... you are my here for speaking your mind!!!!!
 
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JBUCCA

New member
brad, you inspire me too, i think what you wrote was great,,, i also see alot of negativity of here sometimes but i guess people have to vent to someone!!! im not worried about death, everyday is a blessing and im not gonna dwell of dying ... you are my here for speaking your mind!!!!!
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Seems like in the last 50 years, CF has gone from a progressive terminal illness to a progressive chronic illness. Seems like some of you are "walking point" and will be the frist with CF to bounce grandchildren on your knee.<hr></blockquote>

I disagree with this statement. Yes, we are living older - some of us are in our 40's and 50's - but the sad truth is, is that it is a terminal illness. Non of us will die of old age, we will all die of CF (other then Cancer, or being hit by a bus). Therefore - CF is a TERMINAL illness. It still terminates our lifes. Some of us are just lucky enough to live longer then others.
 
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thelizardqueen

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Seems like in the last 50 years, CF has gone from a progressive terminal illness to a progressive chronic illness. Seems like some of you are "walking point" and will be the frist with CF to bounce grandchildren on your knee.<hr></blockquote>

I disagree with this statement. Yes, we are living older - some of us are in our 40's and 50's - but the sad truth is, is that it is a terminal illness. Non of us will die of old age, we will all die of CF (other then Cancer, or being hit by a bus). Therefore - CF is a TERMINAL illness. It still terminates our lifes. Some of us are just lucky enough to live longer then others.
 
A

anonymous

New member
Hmmm....
Well, everyone's going to die of something...and when they say that someone dies of "old age" they're just saying that one or more of someone's systems quit. When the lungs quit, then it's respiratory failure. When the heart quits, it's cardia failure, Etc..

So I agree that you'll all die of CF (respiratory failure) unless you die of something else first.
The longer you live, the more chances of dying of something else.

I say this with a slight smile, because on a COPD board that my husband posted to (which has older posters), their general goal is to live long enough with their COPD that they'll die of something else.

Of course, you have to watch what you're asking for on this one.

My husband had a mega scare 7 months ago. They were sure he had pancreatic cancer from all signs except the biopsy.
When they went in for the biopsy it came back negative.
I think he thought that (all things considered), he'd rather die of bronchiectasis than pancreatic cancer.

And my thought on "terminal" is that if you don't qualify for hospice, then you're not any more terminal than anyone else.

Golly, this is a maudlin topic.

FYI just to lighten things up by thinking of the impossible.
My parents wanted to die simultaenously right after completing the New York Times crossword puzzle. (Actually, they wanted to die simultaenously when they were younger -- right after something else.) Doesn't work like that.

-lisav
 
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anonymous

New member
Hmmm....
Well, everyone's going to die of something...and when they say that someone dies of "old age" they're just saying that one or more of someone's systems quit. When the lungs quit, then it's respiratory failure. When the heart quits, it's cardia failure, Etc..

So I agree that you'll all die of CF (respiratory failure) unless you die of something else first.
The longer you live, the more chances of dying of something else.

I say this with a slight smile, because on a COPD board that my husband posted to (which has older posters), their general goal is to live long enough with their COPD that they'll die of something else.

Of course, you have to watch what you're asking for on this one.

My husband had a mega scare 7 months ago. They were sure he had pancreatic cancer from all signs except the biopsy.
When they went in for the biopsy it came back negative.
I think he thought that (all things considered), he'd rather die of bronchiectasis than pancreatic cancer.

And my thought on "terminal" is that if you don't qualify for hospice, then you're not any more terminal than anyone else.

Golly, this is a maudlin topic.

FYI just to lighten things up by thinking of the impossible.
My parents wanted to die simultaenously right after completing the New York Times crossword puzzle. (Actually, they wanted to die simultaenously when they were younger -- right after something else.) Doesn't work like that.

-lisav
 
A

anonymous

New member
meant to say

"when they say that someone dies of "old age" they're just saying that one or more of someone's systems quit"--but the person and their system was "old".

What is old now anyway?
Folks are living till their 90s. (My parents did)
Average life expectency is still around 72 (I think).
Does this mean 72 is old?
Since they are talking about average life expectency when they say 72, would we say that someone with a chronic illness who dies at 71 would have had a terminal illness?
I'm thinking that if you live long enough to see your kids grownup (if you'd had kids), that should be "good enough" to say your illness was more chronic than terminal.

Heck
Life is terminal
-lisav
 
A

anonymous

New member
meant to say

"when they say that someone dies of "old age" they're just saying that one or more of someone's systems quit"--but the person and their system was "old".

What is old now anyway?
Folks are living till their 90s. (My parents did)
Average life expectency is still around 72 (I think).
Does this mean 72 is old?
Since they are talking about average life expectency when they say 72, would we say that someone with a chronic illness who dies at 71 would have had a terminal illness?
I'm thinking that if you live long enough to see your kids grownup (if you'd had kids), that should be "good enough" to say your illness was more chronic than terminal.

Heck
Life is terminal
-lisav
 
B

Brad

New member
Dear Debbie

I am sorry if I offended You in any way. I understand how You feel.

When I was 29, I was in very bad shape, my pfs were in the low 30's I was in the hospital
that year more than I was out,I didn't think I had much time left.
I was in for a lavage to try andclear many bugs , they all seemed to be in my left lung, it also turned out
I developed legonella, This had my left lung full of infection, I went thru, months of IV's
I went from 210 to 142 is like 3 months. During one of the Lavages( Lung Wash ) my heart stopped 3 times, 6 days later
I awoke in the ICU with some strange round burn markes on my left side and chest.
After about 4 years of fighting the germs, in and out of the hospital, (20times ) I agreed to have my
left lung removed. My pft's have been getting better over the years, the right lung has expanded some giving me more air Vol.

So I do know a little about looking death in the eye.....
All I am saying is Dont wait on or dwell on it, and Just Live the Best You can.........
 
B

Brad

New member
Dear Debbie

I am sorry if I offended You in any way. I understand how You feel.

When I was 29, I was in very bad shape, my pfs were in the low 30's I was in the hospital
that year more than I was out,I didn't think I had much time left.
I was in for a lavage to try andclear many bugs , they all seemed to be in my left lung, it also turned out
I developed legonella, This had my left lung full of infection, I went thru, months of IV's
I went from 210 to 142 is like 3 months. During one of the Lavages( Lung Wash ) my heart stopped 3 times, 6 days later
I awoke in the ICU with some strange round burn markes on my left side and chest.
After about 4 years of fighting the germs, in and out of the hospital, (20times ) I agreed to have my
left lung removed. My pft's have been getting better over the years, the right lung has expanded some giving me more air Vol.

So I do know a little about looking death in the eye.....
All I am saying is Dont wait on or dwell on it, and Just Live the Best You can.........
 
L

littledebbie

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Brad</b></i><br>
It pisses me off when I hear Young people with Cf worried about death those damn

doctors cause a lot of pain and worry for no Good reason, <hr></blockquote>

This was the only part that got under my skin <img src="i/expressions/face-icon-small-happy.gif" border="0"> and I did understand where you were coming from, but it's not exactly for "no good reason". I also, think of all places we should feel comfortable to voice our thoughts on dying it should be here. Most of us on here in the "adult" section realize we have already beaten a lot of the odds but that doesn't keep us from thinking about the inneviatable from time to time and I just don't think anyone should feel like they are somehow not really living to their fullest becasue they occasionally think about their death.

However, i do apprecaite your sentiment that Dr.'s certainly don't know everything/ have all the answeres/ or the ability to see the future with their magic charts. You are 100% correct in that. They don't know how long we will be lucky enough to dodge bad bugs or how our bodies will handle them when/if we get them. So we might as well live our lifes as best we can with our thoughts towards living...working so hard to stay alive only to become obsessed with dying is an irony we can do without.

I just think the death topic shows up on the forum more often then any of us discuss in "real" life becasue of the unique comraderie that we can't find elsewhere. So while you are right, I also wanted to balance it with... if you do want to talk about it (death), think about it, ask questions about it, the forum is a good place to do it, because people here get it, without thinking you are suicidal or something.

At any rate Brad, no hard feelings on this from me, I think the forum is big enough for both of us and even think we will find oursleves on the same side of many a topic <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
L

littledebbie

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Brad</b></i><br>
It pisses me off when I hear Young people with Cf worried about death those damn

doctors cause a lot of pain and worry for no Good reason, <hr></blockquote>

This was the only part that got under my skin <img src="i/expressions/face-icon-small-happy.gif" border="0"> and I did understand where you were coming from, but it's not exactly for "no good reason". I also, think of all places we should feel comfortable to voice our thoughts on dying it should be here. Most of us on here in the "adult" section realize we have already beaten a lot of the odds but that doesn't keep us from thinking about the inneviatable from time to time and I just don't think anyone should feel like they are somehow not really living to their fullest becasue they occasionally think about their death.

However, i do apprecaite your sentiment that Dr.'s certainly don't know everything/ have all the answeres/ or the ability to see the future with their magic charts. You are 100% correct in that. They don't know how long we will be lucky enough to dodge bad bugs or how our bodies will handle them when/if we get them. So we might as well live our lifes as best we can with our thoughts towards living...working so hard to stay alive only to become obsessed with dying is an irony we can do without.

I just think the death topic shows up on the forum more often then any of us discuss in "real" life becasue of the unique comraderie that we can't find elsewhere. So while you are right, I also wanted to balance it with... if you do want to talk about it (death), think about it, ask questions about it, the forum is a good place to do it, because people here get it, without thinking you are suicidal or something.

At any rate Brad, no hard feelings on this from me, I think the forum is big enough for both of us and even think we will find oursleves on the same side of many a topic <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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