death and end times

anonymous

New member
I was wondering how does a cf person feel physically when he gets close to death? Other than chronic dyspnea, what are the clinical signs indicating that death is close? Besides, is it true that most cfers die during their sleep?
 

Faust

New member
From what i've seen and heard (i've been around several that have died), they start retaining their oxygen, and it puts them in la la land and basically puts them into a form of hallucination land. It does something to their brain. I guess it could be described as the same situation as when someone is being eaten alive by an animal. It's natures way of taking us out of the situation so our deaths are more peaceful. But I have witnessed atleast one death where that wasn't the case, and the person was quite miserable till the end. So I guess it has a good deal to do with the persons body chemistry and just what areas are way bad off.


If I get that bad, i'm going to try and come up with a creative and funny way to kill myself, so i'll atleast make the news. Screw that whole end time suffering crap. I had a very close CF friend who didn't want to deal with it either. He was VERY bad off, congested heart failure, looked like a concentration camp prisoner, the whole 9 yards. He had someone close to him give him a large overdose of morphine. Regretably I wasn't there for it, which he really wanted me to be. I was there all the time before that, it was just bad timing that I wasn't there. I did say goodbye to him before I left the last time I left his house (a day or two before he did it to himself), but he really wanted me there to hold his hand when he died, and i'll regret that for the rest of my life.
 

Allie

New member
I don't know what you mean by 'close'. months, weeks, days, hours? Never having had CF myself, I can't say for sure how he felt, but in the days before he died, Ry complained mainly of shortness of breath, which we kept controlled fairly well with drugs. And he was absolutely exhausted, and slept a lot more than usual. We could tell it was getting closer when he started to get confused when he was awake because of the low oxygen. In the hours before he died, the main things I noticed were really, really strange breathing patterns, shallow to deep fast to slow, and every so often he'd pause for a while, and when he did come to it'd only be for a few minutes. And it was obvious that the congestion in his lungs was building up, as he'd lost the strength to cough, and lips got quite blue.

He was unconsious when he died, but I wouldn't say he was asleep. I'm pretty sure he could hear me and had an understanding of everything. If I didn't answer your question right, let me know or e-mail or Im me.

Edit: SeanDavis, do you mean retaining carbon dioxide? also known as repiratory acidosis, yes, that's usually what happens. And it makes them drowsy, restless, confused etc. Also makes their heart pound like crazy.
 

thelizardqueen

New member
Does that mean that CF people die by suffocating to death? That really scares me. I think I'd rather be hopped up on something then go through that. Death scares me.
 

Emily65Roses

New member
Sometimes it's not really suffocating so much as it's carbon dioxide poisoning. And that's just like going to sleep/ passing out.
 

Allie

New member
Like Emily said, it's not nearly as graphic as it sounds. And modern medicine has a lot of nice drugs that help tremendously. It doesn't have to be completely miserable. It's sometimes a matter of how good your end of life care is.
 

Faust

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>thelizardqueen</b></i><br>Does that mean that CF people die by suffocating to death? That really scares me. I think I'd rather be hopped up on something then go through that. Death scares me.<hr></blockquote>


Yeah to some extent, in the end, we *ALL* suffocate. Some get excess carbon dioxide in their system, and go into la la land. And others that are still being sufferable, get extreme hardcore drugs given to them where they will trip Balls, and end their days in an old pink floyd album. What my one friend did opened my eyes, and then some. Regardless if you are of a christian denomination or not, there is only so much personal torture that you should be expected to take. I know the whole "Unpardonable sin" criteria...But if im suffering so much, and find a way to end my suffering, if that means that by the christian dogma im just as punishable as hitler, and other horrible lifeforms, than thats not a god that I want to follow. An intelligent god would realive you took as much punishment as you could stand, and wanted to end the rest of your punishment. If that decision makes me equal with Hitler (meaning the "unpardonable sin", and i'm just as bad for trying to relieve my suffering), than I don't want to follow a god like that. And if that means i'm just as qualified to be in hell, as the same monsters in our time, than even more so...A god like that doesn't deserve to have followers.


As I Have told others, I am very healthy now, but eventually it will by my turn to deal with this utmost horrible way to die (because the pharmaceutical industry isn't going to save me or anyone else anytime soon), when I get to the point where I can barely breathe, barely have sex, and can barely move, sorry...I'm goung to off myself. If that makes me as equal with the monsters of our times, and I am viewed the same way in the after life, then by all means view me that way, because to me it makes zero sense, and I refuse to follow a god that is that ignorant.
 

kybert

New member
id say most do die during their sleep, considering when death is near they sleep almost non stop and only have a minute or 2 awake every so often. dont worry lizardqueen, it doesnt feel like someone is smothering you with a pillow or holding you underwater and as allie said there are alot of drugs to help with the process.
 
L

luke

Guest
I know many would prefer die while sleeping....I always thought I can control my body so unless I am unconscious due to hypercapnia I have a strong feeling I will be fighting until the very end.


luke
 

JazzysMom

New member
This idea scares me a bit from my experience with my epilepsy. During one seizure (which in the past always happen when I am asleep) I felt like I wanted to wake up & couldnt. I fought & fought (or at least that is what it felt like) & I couldnt move, open my eyes or talk. It was like my brain was dreaming yet not. That is what I imagine it to be like when one is unconcious. You can hear, you can sense but you cant respond. I am not comfortable with that..........of course whatever it is it is & I dont walk around worrying about something out of my control.
 

ihatecf

New member
Hey Melissa, I used to go through this in the past. I know what you feel. Sean Davis part of my mind tell me you are true. However, I trust God and I know he would judge us fairly.
 

Allie

New member
It wasn't nearly as horrific (from my perspective) as I thought it would be. I suppose, since you die of respiratory failure, you could call it suffocation, but it didn't seem like that. It was like he just didn't really care how he was breathing anymore. Granted, I think the morphine helped, but it wasn't a horrible rage against the light to the bitter end. He seemed quite calm and 'okay' with the entire thing in the hours before he died. I think the fact that he was at home, in familiar surroundings also eased his anxiety.

A day or so before he died, he talked to me about feeling 'disconnected' from the whole thing. He couldn't explain it to me, just said it was a strange sensation of not really being in the moment. So maybe you don't even feel it like we all think, maybe your body totally takes you out of the situation.

But like Melissa said, why run around worrying baout it all day if you can't really change it? all you can do is talk to your family about what kind of care you want regarding the end of your life, which I highly, highly, recommend.
 
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