Don't wait on Death

[anonymous]

When I was diagnosed at 2, the doctors told my parents I'd never live to start kindergarten, then middle school, then high school...Here I am at almost 34 and still chugging along with a mild condition. Since 5th grade, I've only been in the hospital once (five years ago).

My boyfriend worries about my death age, from the cf literature out there, and I tell him if we were to plan our lives based on what some book or doctor told us, we might as well break up right then. He is always still amazed that I'm "alive" when the info he googled on cf stated that I should've died by now.

Great post Brad!

--Wallflower - 3yrs NWOD (not waiting on death)

 

[anonymous]

When I was diagnosed at 2, the doctors told my parents I'd never live to start kindergarten, then middle school, then high school...Here I am at almost 34 and still chugging along with a mild condition. Since 5th grade, I've only been in the hospital once (five years ago).

My boyfriend worries about my death age, from the cf literature out there, and I tell him if we were to plan our lives based on what some book or doctor told us, we might as well break up right then. He is always still amazed that I'm "alive" when the info he googled on cf stated that I should've died by now.

Great post Brad!

--Wallflower - 3yrs NWOD (not waiting on death)

 

[Faust]

On the other hand, I do think it's acceptable for a doctor to share the average lifespan # wise, from overall CF statistics with the patients parents. But also inform them that with proper care, diet, mental attitude, and mutation considered, your child doesn't have to fit into those longevity models. To me there isn't anything wrong with a doc saying "Well, 50% of CF's don't live to 30...BUT, that doesn't mean that will be the case for you, especially if you do your treatment/medications, eat right, exercise, and have a winning mental attitude".

 

[Faust]

On the other hand, I do think it's acceptable for a doctor to share the average lifespan # wise, from overall CF statistics with the patients parents. But also inform them that with proper care, diet, mental attitude, and mutation considered, your child doesn't have to fit into those longevity models. To me there isn't anything wrong with a doc saying "Well, 50% of CF's don't live to 30...BUT, that doesn't mean that will be the case for you, especially if you do your treatment/medications, eat right, exercise, and have a winning mental attitude".

 

[LouLou]

I've seen 7 different CF doctors throughout my life and Sean's quote is pretty much the attitude I've always seen/heard from them. On Allie's note: I found it helpful to understand more about the realities of how death occurs because if anything doctors have been so cheerful that they never seems appropriate to talk about stuff like how death in CF happens. I love this site. Really makes you think.

 

[LouLou]

I've seen 7 different CF doctors throughout my life and Sean's quote is pretty much the attitude I've always seen/heard from them. On Allie's note: I found it helpful to understand more about the realities of how death occurs because if anything doctors have been so cheerful that they never seems appropriate to talk about stuff like how death in CF happens. I love this site. Really makes you think.

 

[Lilith]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Allie</b></i><br>I hate when it turns into "If you talk about death, you're a negative nancy, etc" The odds of dying, of CF, younger than your peers is high. It's natural to be curious. I'd rather someone satisfied that than live in fear of it. I know there are people who agree iwth me but I doubt they'll speak up, so feel free to ream em if you choose.<hr></blockquote>

Not true, Allie. I'm with you. I used to live in fear of death because I didn't really understand it. Then I started researching different cultures and their take on it, and from that, I gained a lot of knowledge on many different subjects. Doctors don't purposely try to scare you when they tell you how long they predict your life will be. That's just what they can tell based on the information they have. They aren't doing it to be mean. Its better to 'prepare' than to be lied to and caught off guard. I would hate that the most.

And yes, I agree, just because some people talk about death doesn't mean their negative. It means that they're realists. Unless of course they're one of those annoying emo kids who whine about it. That's a different story <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Lilith]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Allie</b></i><br>I hate when it turns into "If you talk about death, you're a negative nancy, etc" The odds of dying, of CF, younger than your peers is high. It's natural to be curious. I'd rather someone satisfied that than live in fear of it. I know there are people who agree iwth me but I doubt they'll speak up, so feel free to ream em if you choose.<hr></blockquote>

Not true, Allie. I'm with you. I used to live in fear of death because I didn't really understand it. Then I started researching different cultures and their take on it, and from that, I gained a lot of knowledge on many different subjects. Doctors don't purposely try to scare you when they tell you how long they predict your life will be. That's just what they can tell based on the information they have. They aren't doing it to be mean. Its better to 'prepare' than to be lied to and caught off guard. I would hate that the most.

And yes, I agree, just because some people talk about death doesn't mean their negative. It means that they're realists. Unless of course they're one of those annoying emo kids who whine about it. That's a different story <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EnergyGal]

Hello Brad

I am very happy for you that you are doing so well. You are a great example for those who are young who have CF. I am 46 because I had a double lung transplant. I do not remember being told about how sick I was when I was young but I knew just by breathing and coughing that I did not feel healthy and I knew that CF was a disease and how many serious diseases are curable? So I grew up with some fear but I used the fear to live more fully and took better care of myself because of the fear.

I would just want to add one thing that is a little off tangent but I feel this is important for some of the young people. Yesterday CF and science appeared bleak. Today I feel there is a greater handle on life for a person with cf however if a doctor tells a patient that they need a transplant that should not be taking lightly. Today with transplantation if a patient waits too long because they do not believe their doctor then that patient will lose their opportunity to be transplanted (in some cases) even with the new allocation system. I am talking about myself. I had a doctor tell me that I should get evaluated and instead, I went to more CF doctors and when I started to believe them, I got very sick and I started to feel the effects of declinning health as I could not bounce back like I did in the past. So there comes a time when we all need to listen to the doctors. I do believe you are absolutely corrrect in everything you say but just wanted to add a fine line in here since I walked the transplant life.

Thank you
Risa

 

[EnergyGal]

Hello Brad

I am very happy for you that you are doing so well. You are a great example for those who are young who have CF. I am 46 because I had a double lung transplant. I do not remember being told about how sick I was when I was young but I knew just by breathing and coughing that I did not feel healthy and I knew that CF was a disease and how many serious diseases are curable? So I grew up with some fear but I used the fear to live more fully and took better care of myself because of the fear.

I would just want to add one thing that is a little off tangent but I feel this is important for some of the young people. Yesterday CF and science appeared bleak. Today I feel there is a greater handle on life for a person with cf however if a doctor tells a patient that they need a transplant that should not be taking lightly. Today with transplantation if a patient waits too long because they do not believe their doctor then that patient will lose their opportunity to be transplanted (in some cases) even with the new allocation system. I am talking about myself. I had a doctor tell me that I should get evaluated and instead, I went to more CF doctors and when I started to believe them, I got very sick and I started to feel the effects of declinning health as I could not bounce back like I did in the past. So there comes a time when we all need to listen to the doctors. I do believe you are absolutely corrrect in everything you say but just wanted to add a fine line in here since I walked the transplant life.

Thank you
Risa

 

[JazzysMom]

I dont think its healthy to not discuss death whether you have CF or not. Death is as much a part of life as birth is yet no one usually is skeptacle about discussing that. Statistically CFers die at a younger age. Its a fact. It does vary from person to person. I dont agree with doctor coming right out & saying, You wont live to your teens etc. I do think they have to reinforce that CF is life shortening & eventually fatal, BUT that the average lifespan is whatever it is at that time AND that varies so much that we have to look at you on an INDIVIDUAL basis. My husband thinks I "enjoy" speaking about death because I do frequent the topic often. He has overheard me discussing things with my daughter etc. I told him its not that I "enjoy" it, but I am not scared of it nor do I want my/our daughter to be so either. I think it helps everyone to handle it better when we lose someone. I wish death would have been discussed more openly when my Dad was alive then MAYBE his death wouldnt have been so hard on me. I mean I would still miss him, but I would have been more able to adapt I think.

 

[JazzysMom]

I dont think its healthy to not discuss death whether you have CF or not. Death is as much a part of life as birth is yet no one usually is skeptacle about discussing that. Statistically CFers die at a younger age. Its a fact. It does vary from person to person. I dont agree with doctor coming right out & saying, You wont live to your teens etc. I do think they have to reinforce that CF is life shortening & eventually fatal, BUT that the average lifespan is whatever it is at that time AND that varies so much that we have to look at you on an INDIVIDUAL basis. My husband thinks I "enjoy" speaking about death because I do frequent the topic often. He has overheard me discussing things with my daughter etc. I told him its not that I "enjoy" it, but I am not scared of it nor do I want my/our daughter to be so either. I think it helps everyone to handle it better when we lose someone. I wish death would have been discussed more openly when my Dad was alive then MAYBE his death wouldnt have been so hard on me. I mean I would still miss him, but I would have been more able to adapt I think.

 

[anonymous]

Hi all,

I think there is also a positive aspect about "thinking of death" as long as you are not "frightenend to death" because of that.
For me it means that I live my life now, that I do what I like to (like travelling a lot) now, because I don´t know how long I will be able to do so.
Of course everyone can get suddenly sick or die by accident, but most healthy people don´t want to think about that. So they say "I have to work all day, no time for fun and vacation, I will do that later when I have earned enough money" and when something happens to them, they say "why me, now I can´t do all the things I wanted too" and have never lived their dreams...
A friend of mine died by accident in his midthirties, he had so many plans, but waited too long...
So my thinking always was that I have to work to have money for my living, not that work is all my life until I´m too old to travel. Now I had to stop working, because it was getting too hard, but I don´t miss it. I have less money now, so I will probably not be able to travel as much as before, but I can say that I have already seen more than most people do in their whole (long or short) life and I think I wouldn´t have done this with a "normal" life expectancy.

Uli,43,Germany

 

[anonymous]

Hi all,

I think there is also a positive aspect about "thinking of death" as long as you are not "frightenend to death" because of that.
For me it means that I live my life now, that I do what I like to (like travelling a lot) now, because I don´t know how long I will be able to do so.
Of course everyone can get suddenly sick or die by accident, but most healthy people don´t want to think about that. So they say "I have to work all day, no time for fun and vacation, I will do that later when I have earned enough money" and when something happens to them, they say "why me, now I can´t do all the things I wanted too" and have never lived their dreams...
A friend of mine died by accident in his midthirties, he had so many plans, but waited too long...
So my thinking always was that I have to work to have money for my living, not that work is all my life until I´m too old to travel. Now I had to stop working, because it was getting too hard, but I don´t miss it. I have less money now, so I will probably not be able to travel as much as before, but I can say that I have already seen more than most people do in their whole (long or short) life and I think I wouldn´t have done this with a "normal" life expectancy.

Uli,43,Germany

 

[anonymous]

Just read your messages. You are amazing people! I am constantly worrying about the future at the moment, can't help it. My daughter is only 2 years old, but whenever I am having a bad day, I just have a read to try and cheer me up and make me strong again. Just hope my daughter turns out to be just as amazing as all you guys.

Charlotte<img src="i/expressions/oxygen.gif" border="0">

 

[anonymous]

Just read your messages. You are amazing people! I am constantly worrying about the future at the moment, can't help it. My daughter is only 2 years old, but whenever I am having a bad day, I just have a read to try and cheer me up and make me strong again. Just hope my daughter turns out to be just as amazing as all you guys.

Charlotte<img src="i/expressions/oxygen.gif" border="0">

 

[gsplover]

I think the key to survival is to accept the challenge. Keep fighting. Don't let the fight get you. You do not need to have CF to live by these words. One day a friend of mine found out her granddaughter was diagnosised with CF. She had a niece with it and also knew myself and my friend Neil who passed 4/2005 (God rest is soul). She looked at the positive side of things. She said "at least my granddaughter will be intelligent, strong, passionate and special." Everyday, I accept the challenge.

 

[gsplover]

I think the key to survival is to accept the challenge. Keep fighting. Don't let the fight get you. You do not need to have CF to live by these words. One day a friend of mine found out her granddaughter was diagnosised with CF. She had a niece with it and also knew myself and my friend Neil who passed 4/2005 (God rest is soul). She looked at the positive side of things. She said "at least my granddaughter will be intelligent, strong, passionate and special." Everyday, I accept the challenge.

 

[CowTown]

I wanted to add after seeing all of these replies, that feeling the burden of death at times, is the nature of this beast. I find it much easier not thinking about CF and death when I'm feeling great and my PFTs are at a pretty number. It's a tough thing to stay strong and think "heck these doctors don't know anything about my longevity" when you feel your own health drop or your numbers drop. It's just a tough thing mentally to deal with sometimes. No reason to stay in those bad thoughts forever, but it could be a hurdle or phase to get over so that you then feel free to be worry-free. It just depends on where someone is emotionally and mentally at the time of telling someone to lighten up. Sure, everyone needs to lighten up if they're too heavy, but that comes with time. Time after dealing and healing emotionally. I suppose I feel guilty of sounding negative lately on this forum. And it's true I've been in a slump and need to get out of it, which is what I am trying to do by venting. That's why I came here in the first place, to hopefully find inspiration so that I can get back on the road again, excersise and get my numbers back up. Decemeber my doc gave me another time line, he said I have 10 years until I will need a transplant as long as my PFT numbers stay where they are right now. That's a lot of info to take in, put into the appropriate place in your brain, get over it (is that really possible? I don't know.) and then start to prove them wrong...again. I think for some people to not concern themselves with dying is a wonderful thing, and maybe difficult for others if they're facing immediate issues. One person may feel great, may have just hit a super high PFT able to run a marathon etc, and the next person might not feel so great. For the second person, it could be very difficult to forget all the negative stuff in the charts, especially when they *feel* bad. I would imagine most people wouldn't want to feel bothered by all this health stuff because it's a burden, but is it really that easy? It's a nice goal for sure, but everyone deserves the space to feel bad on days. Otherwise that's denying them of feeling and only allowing for *happy* days. Life is filled with happy, sad, thrilling, exciting, confusing, painful, care-free, hilarious days, and a whole bunch of other stuff. Our lives have space and time for all of those. Of course the best ones are the happy ones and everyone wants those. Just a thought.

 

[CowTown]

I wanted to add after seeing all of these replies, that feeling the burden of death at times, is the nature of this beast. I find it much easier not thinking about CF and death when I'm feeling great and my PFTs are at a pretty number. It's a tough thing to stay strong and think "heck these doctors don't know anything about my longevity" when you feel your own health drop or your numbers drop. It's just a tough thing mentally to deal with sometimes. No reason to stay in those bad thoughts forever, but it could be a hurdle or phase to get over so that you then feel free to be worry-free. It just depends on where someone is emotionally and mentally at the time of telling someone to lighten up. Sure, everyone needs to lighten up if they're too heavy, but that comes with time. Time after dealing and healing emotionally. I suppose I feel guilty of sounding negative lately on this forum. And it's true I've been in a slump and need to get out of it, which is what I am trying to do by venting. That's why I came here in the first place, to hopefully find inspiration so that I can get back on the road again, excersise and get my numbers back up. Decemeber my doc gave me another time line, he said I have 10 years until I will need a transplant as long as my PFT numbers stay where they are right now. That's a lot of info to take in, put into the appropriate place in your brain, get over it (is that really possible? I don't know.) and then start to prove them wrong...again. I think for some people to not concern themselves with dying is a wonderful thing, and maybe difficult for others if they're facing immediate issues. One person may feel great, may have just hit a super high PFT able to run a marathon etc, and the next person might not feel so great. For the second person, it could be very difficult to forget all the negative stuff in the charts, especially when they *feel* bad. I would imagine most people wouldn't want to feel bothered by all this health stuff because it's a burden, but is it really that easy? It's a nice goal for sure, but everyone deserves the space to feel bad on days. Otherwise that's denying them of feeling and only allowing for *happy* days. Life is filled with happy, sad, thrilling, exciting, confusing, painful, care-free, hilarious days, and a whole bunch of other stuff. Our lives have space and time for all of those. Of course the best ones are the happy ones and everyone wants those. Just a thought.