Dying...

[anonymous]

I'm sorry about the horrible title of this thread but I didnt really know wat else to call it. I'm 23 and have cf and i guess maybe i'm a little naive about the whole thing. i kinda always thought i was invincible and that there wasnt really ever a chance of me dying as young as i was expected to. now im not too well and have to look at the possibilities. what i actually want to know is this- how do most people with cf die? i mean, i know our health deteriorates slowly over time but do you usually know when its going to happen? is it slow or painful? are you normally in hospital waiting for it happen? what exactly happens? please dont sugarcoat this for me...i really need some answers and figure this is the best place to come. sorry for what i'm asking but im just at a stage where i need to know these things. thank you.

Tara, 23 w/cf, cfrd

 

[anonymous]

I'm sorry about the horrible title of this thread but I didnt really know wat else to call it. I'm 23 and have cf and i guess maybe i'm a little naive about the whole thing. i kinda always thought i was invincible and that there wasnt really ever a chance of me dying as young as i was expected to. now im not too well and have to look at the possibilities. what i actually want to know is this- how do most people with cf die? i mean, i know our health deteriorates slowly over time but do you usually know when its going to happen? is it slow or painful? are you normally in hospital waiting for it happen? what exactly happens? please dont sugarcoat this for me...i really need some answers and figure this is the best place to come. sorry for what i'm asking but im just at a stage where i need to know these things. thank you.

Tara, 23 w/cf, cfrd

 

[nocode]

Hi Tara.. I think that the questions you're asking here have been asked by all of us,to ourselves. I think the idea of dying is always very present in our lives, even if just in the back of our heads.. So trust me, you're not alone. I think the process differs from person to person. I know of one girl who had cf who had been in the hospital for a few weeks, then she got out and a few days later she died , driving her car! So you know, there isnt a rule.
You said you are getting worse now, but how bad is it? Me , for example, i think i have a mild case of the disease but when i get a cold i do get a lot worse, then i take care of it, with treatments and everything goes back to normal. Are you having an infection right now ,something that could be over soon, or is your health actually going down too much, progressively? I hope you're not getting too negative now because i do believe that if one is depressed or just too negative, his/her health will be affected by that.
Let me know how you are.
Vera

 

[nocode]

Hi Tara.. I think that the questions you're asking here have been asked by all of us,to ourselves. I think the idea of dying is always very present in our lives, even if just in the back of our heads.. So trust me, you're not alone. I think the process differs from person to person. I know of one girl who had cf who had been in the hospital for a few weeks, then she got out and a few days later she died , driving her car! So you know, there isnt a rule.
You said you are getting worse now, but how bad is it? Me , for example, i think i have a mild case of the disease but when i get a cold i do get a lot worse, then i take care of it, with treatments and everything goes back to normal. Are you having an infection right now ,something that could be over soon, or is your health actually going down too much, progressively? I hope you're not getting too negative now because i do believe that if one is depressed or just too negative, his/her health will be affected by that.
Let me know how you are.
Vera

 

[nocode]

I might as well share something i read once, even though i dont like talking about this.. To answer one of your questions.. I read once on a website (i dont remember which one now) that cf patients have a peaceful death. I think the worst could be the way to get there , the final stages. I'm so sorry for talking about this so bluntly , i meant to send this to Tara privately but it's not an option.

 

[nocode]

I might as well share something i read once, even though i dont like talking about this.. To answer one of your questions.. I read once on a website (i dont remember which one now) that cf patients have a peaceful death. I think the worst could be the way to get there , the final stages. I'm so sorry for talking about this so bluntly , i meant to send this to Tara privately but it's not an option.

 

[anonymous]

I can definitely answer this question. I was at the point of no return before my first transplant. I was found in my apt. in respiratory failure. I remember no pain at all and having no difficulty breathing. OF course I could not breathe well but my brain did not understand what was happening. Fortunately, I was transplanted two days later and was on Bipap until the transplant. I only had Bipap for a few days.

Risa

 

[anonymous]

I can definitely answer this question. I was at the point of no return before my first transplant. I was found in my apt. in respiratory failure. I remember no pain at all and having no difficulty breathing. OF course I could not breathe well but my brain did not understand what was happening. Fortunately, I was transplanted two days later and was on Bipap until the transplant. I only had Bipap for a few days.

Risa

 

[nocode]

Risa, what is Bipap? How do you feel presently?
Before you were found with respiratory failure, had you been feeling very bad the previous months,like you couldn't breath? Were you on oxygen? Sorry for the questions, reply only if you feel comfortable talking about it. Thanks.

 

[nocode]

Risa, what is Bipap? How do you feel presently?
Before you were found with respiratory failure, had you been feeling very bad the previous months,like you couldn't breath? Were you on oxygen? Sorry for the questions, reply only if you feel comfortable talking about it. Thanks.

 

[CowTown]

Tara, I've wondered how it actually happens too. I don't know.

 

[CowTown]

Tara, I've wondered how it actually happens too. I don't know.

 

[Allie]

AH death, the great taboo subject. I'll just tell you the truth as best I know it, as obviously it wasn't me doing the dying. I do think, as with every disease, it varies. You can't say "CF is a horrible way to die" or "CF is a great way to die". Liek cancer, I've heard horror stories and I've heard awesome ones.

In truth, the last few months of Ry's life were harder than the last few days of it. For everyone involved.

But when he got sick again right after coming out of the hospital, and made a desicion to stay at home under hospice care, things were actually a lot easier. He decided to stop his treatments so he could catch a break from them for once in his life. We had him on different drugs, and eventually morphine, to relieve breathlesness and any pain he might have been in. We just kept him on the couch at the center of the family, and stayed with him, talked to him, all that good family stuff. Over the days, he just drifted in and out of consiousness, more out than in as the days went on. And then, 5 days after he had stopped his treatments, he died very quietly in my arms. It wasn't rough at all.


If I skipped anything you want to know, let me know.

Edited to add: Tara, if you have any other questions you don't comfortable asking here (or anyone for that matter) you can Email me at RyAllieAhava@yahoo.com

 

[Allie]

AH death, the great taboo subject. I'll just tell you the truth as best I know it, as obviously it wasn't me doing the dying. I do think, as with every disease, it varies. You can't say "CF is a horrible way to die" or "CF is a great way to die". Liek cancer, I've heard horror stories and I've heard awesome ones.

In truth, the last few months of Ry's life were harder than the last few days of it. For everyone involved.

But when he got sick again right after coming out of the hospital, and made a desicion to stay at home under hospice care, things were actually a lot easier. He decided to stop his treatments so he could catch a break from them for once in his life. We had him on different drugs, and eventually morphine, to relieve breathlesness and any pain he might have been in. We just kept him on the couch at the center of the family, and stayed with him, talked to him, all that good family stuff. Over the days, he just drifted in and out of consiousness, more out than in as the days went on. And then, 5 days after he had stopped his treatments, he died very quietly in my arms. It wasn't rough at all.


If I skipped anything you want to know, let me know.

Edited to add: Tara, if you have any other questions you don't comfortable asking here (or anyone for that matter) you can Email me at RyAllieAhava@yahoo.com

 

[Faust]

There are three ways to die with CF. Two are slow and one is faster. The best way to go is what sounds like what happened to Ry, which sounds like heart failure. Basically your heart can't take all the stress and struggling to breath with all the fluid in the lungs and stuff and just gives out. I've heard of others who have a weird breathing attack and go into respiratory arrest and die that way. And then there is the very crappy way in my opinion, which is you lay there and get worse and worse and you are on a ventilator, mostly aware of your suffering that is taking place, and due to the ventilator and the medications you can't speak or write to communicate. The last way takes a while, and is probably the worst way to go. Either way is crappy and there isn't a real quick way like getting hit by a bus, so you will be aware of your situation in general and be either hallucinating due to oxygen loss and pain medications.


3 general ways, 2 really suck, 1 still sucks but not as bad as the other two.

 

[Faust]

There are three ways to die with CF. Two are slow and one is faster. The best way to go is what sounds like what happened to Ry, which sounds like heart failure. Basically your heart can't take all the stress and struggling to breath with all the fluid in the lungs and stuff and just gives out. I've heard of others who have a weird breathing attack and go into respiratory arrest and die that way. And then there is the very crappy way in my opinion, which is you lay there and get worse and worse and you are on a ventilator, mostly aware of your suffering that is taking place, and due to the ventilator and the medications you can't speak or write to communicate. The last way takes a while, and is probably the worst way to go. Either way is crappy and there isn't a real quick way like getting hit by a bus, so you will be aware of your situation in general and be either hallucinating due to oxygen loss and pain medications.


3 general ways, 2 really suck, 1 still sucks but not as bad as the other two.

 

[anonymous]

Hi Tara,

My husband (32yr old) passed away last year. The final weeks and days were way worse than the actual death. Mentally and physically he was spent. For me, the weeks of watching him struggle were worse than being there when he died. Even that horrible night I was amazed at how peaceful the experience was. He did not seem to be in distress or pain.
Thank you Risa for your reply, it was comforting to hear from you that you don't remember any pain- it helps to here that.

Melissa

 

[anonymous]

Hi Tara,

My husband (32yr old) passed away last year. The final weeks and days were way worse than the actual death. Mentally and physically he was spent. For me, the weeks of watching him struggle were worse than being there when he died. Even that horrible night I was amazed at how peaceful the experience was. He did not seem to be in distress or pain.
Thank you Risa for your reply, it was comforting to hear from you that you don't remember any pain- it helps to here that.

Melissa

 

[Faust]

If I ever get near that stage of extremely hating being alive, I fully plan on having someone else take my life. I refuse to sit there and feel miserable and die in that way. Since Kevorkian is locked up, i'll have to be creative and do something like have 5 of my real close friends all have a syringe, 4 of which are filled with saline, and one is filled with enough morphine to drop an elephant (just like the old electric chair executions). That way noone knows who actually put me down, and if they get caught somehow, it would be easier legally to muddy any convictions. My one older CF friend died similar to this, and it worked out fine.

 

[Faust]

If I ever get near that stage of extremely hating being alive, I fully plan on having someone else take my life. I refuse to sit there and feel miserable and die in that way. Since Kevorkian is locked up, i'll have to be creative and do something like have 5 of my real close friends all have a syringe, 4 of which are filled with saline, and one is filled with enough morphine to drop an elephant (just like the old electric chair executions). That way noone knows who actually put me down, and if they get caught somehow, it would be easier legally to muddy any convictions. My one older CF friend died similar to this, and it worked out fine.