Dying...

[anonymous]

Hello Nocode

Bipap was for my retention of Carbon dixoide that I was building up in my lungs because of the lung disease. My heart was getting bigger as in cor pulmonale *end stage CF* I was on a transplant list and the Bipap helped to drive out the Co2 it helped a lot. I had it for a few days. Some people stay on it for a while but it really works. Mostly my problem was severe panic attacks caused from the Co2 retainer that I was at the time. If I did not have the panic attacks it would not have been bad at all. I did four therapies a day with a therapist plus used the vest afterward and stayed ok until my oxygen fell off at night and that is when I went into respiratory failure. I RECOMMEND everyone who is on oxygen to take special tape that can be put on the body to keep the oxygen on. For my second transplant ten years later, I used the tape one piece on each side around my nose and it kept the oxygen on at all times at bedtime. I had the tape off in the day time.

I am feeling great after going through the second transplant. The first transplant I was out in ten days and the second was a lot more difficult but once I got out of the hospital I was back to the same ole Risa. I had eight very healthy years after the first transplant and the last year and a half was not so bad. it was much easier than cf. If I needed another transplant i would do it again. I hope that is not necessary for many long years. I plan on taking great care of myself.

Actually, I can say I felt no pain in the last days waiting for my first transplant. When it came down to it all I lost my fear which took away the panic attacks. I guess I work great under pressure. pardon the pun

Many people focus on the future so much that they forget about the present and that is what causes so much anxiety. I had a respiratory therapist tell me to Enjoy the moment when I was very sick. At first I thought she was crazy but found her words to be quite meaningful. I actually tried to enjoy the moments when people rubbed my back or gave me massages and felt that moment was so great. Once I yelled out to my nurse "enjoy the moment" Her hair looked like it turned white for that moment. I scared her. Some moments I will never forget

Take care of yourself and live in the moment when you can
Risa

 

[anonymous]

Hello Nocode

Bipap was for my retention of Carbon dixoide that I was building up in my lungs because of the lung disease. My heart was getting bigger as in cor pulmonale *end stage CF* I was on a transplant list and the Bipap helped to drive out the Co2 it helped a lot. I had it for a few days. Some people stay on it for a while but it really works. Mostly my problem was severe panic attacks caused from the Co2 retainer that I was at the time. If I did not have the panic attacks it would not have been bad at all. I did four therapies a day with a therapist plus used the vest afterward and stayed ok until my oxygen fell off at night and that is when I went into respiratory failure. I RECOMMEND everyone who is on oxygen to take special tape that can be put on the body to keep the oxygen on. For my second transplant ten years later, I used the tape one piece on each side around my nose and it kept the oxygen on at all times at bedtime. I had the tape off in the day time.

I am feeling great after going through the second transplant. The first transplant I was out in ten days and the second was a lot more difficult but once I got out of the hospital I was back to the same ole Risa. I had eight very healthy years after the first transplant and the last year and a half was not so bad. it was much easier than cf. If I needed another transplant i would do it again. I hope that is not necessary for many long years. I plan on taking great care of myself.

Actually, I can say I felt no pain in the last days waiting for my first transplant. When it came down to it all I lost my fear which took away the panic attacks. I guess I work great under pressure. pardon the pun

Many people focus on the future so much that they forget about the present and that is what causes so much anxiety. I had a respiratory therapist tell me to Enjoy the moment when I was very sick. At first I thought she was crazy but found her words to be quite meaningful. I actually tried to enjoy the moments when people rubbed my back or gave me massages and felt that moment was so great. Once I yelled out to my nurse "enjoy the moment" Her hair looked like it turned white for that moment. I scared her. Some moments I will never forget

Take care of yourself and live in the moment when you can
Risa

 

[momofjosh]

I just lost my son one month ago. He was afraid of suffocating. But that is not how it was at all. Like others have said the last few weeks he was quite sick. But the last 6 days he was on hospice at home with lots of family around him. He was also in and out of conciousness. We promised him we would do everything we could to keep him comfortable and out of pain. I really don't think he knew much of what was going on during that time. He would wake up and be sort of confused, but he would want to hug us and he kept telling us he loved us. When he actually died it was not bad at all. He just stopped breathing, no gasping for air or nothing. I know death is hard to think about... but whenever it may come for you- enjoy every minute you can right now and tell the people close to you how you feel. I can't imagine how you feel except what I heard from my son. Try not to dwell on the end too much...just enjoy whatever is left of your life the best you can! I feel for you. I wish you all the best.
momofjosh

 

[momofjosh]

I just lost my son one month ago. He was afraid of suffocating. But that is not how it was at all. Like others have said the last few weeks he was quite sick. But the last 6 days he was on hospice at home with lots of family around him. He was also in and out of conciousness. We promised him we would do everything we could to keep him comfortable and out of pain. I really don't think he knew much of what was going on during that time. He would wake up and be sort of confused, but he would want to hug us and he kept telling us he loved us. When he actually died it was not bad at all. He just stopped breathing, no gasping for air or nothing. I know death is hard to think about... but whenever it may come for you- enjoy every minute you can right now and tell the people close to you how you feel. I can't imagine how you feel except what I heard from my son. Try not to dwell on the end too much...just enjoy whatever is left of your life the best you can! I feel for you. I wish you all the best.
momofjosh

 

[DebbieC]

I had the Co2 Poisening twice ( this past August and in October) Both times I just so happened to be out of town at music festivals with my best friend. The first time, we were driving from San Francisco to Colorado (she had to do all the driving). I kept passing out, and I was so scared to go to sleep. I was so weak, I couldn't even stand up, and I was getting these TERRIBLE headaches. When I got to the ER at home my O2 stat was at 68! I was in for 3 weeks. The next time,we were in Vegas. I had to rent a wheelchair from the hotel, and by the flight home I knew it was happening again and I went back for another 3 weeks.

I remember my dad sitting by my hospital bed telling me I was dying. I argued with him because I honestly didn't FEEL all that bad except for the headaches. I dozed off alot and I kept repeating myself, and I would wake up suddenly. I was terrified to go to sleep. They kept giving me paing meds and I didn't want to take them because I guess I didn't want to loose control. I got my whole transplant evaluation done while I was in and got listed in December. Whew!

 

[DebbieC]

I had the Co2 Poisening twice ( this past August and in October) Both times I just so happened to be out of town at music festivals with my best friend. The first time, we were driving from San Francisco to Colorado (she had to do all the driving). I kept passing out, and I was so scared to go to sleep. I was so weak, I couldn't even stand up, and I was getting these TERRIBLE headaches. When I got to the ER at home my O2 stat was at 68! I was in for 3 weeks. The next time,we were in Vegas. I had to rent a wheelchair from the hotel, and by the flight home I knew it was happening again and I went back for another 3 weeks.

I remember my dad sitting by my hospital bed telling me I was dying. I argued with him because I honestly didn't FEEL all that bad except for the headaches. I dozed off alot and I kept repeating myself, and I would wake up suddenly. I was terrified to go to sleep. They kept giving me paing meds and I didn't want to take them because I guess I didn't want to loose control. I got my whole transplant evaluation done while I was in and got listed in December. Whew!

 

[EB24]

SeanDavis, just to add a couple of ways, here is what I told could happen to me. Now keep in mind, I have had bleeds so that is a part of it. 1. I could have a major bleed and die due to loss of blood. 2. I and am sure most of you cough extremely hard. I was told that one of these could bring on a heart attack and /or stroke.
So there are more than the three ways. I am sure there are even more, but just remember, we could walk outside and get hit by a truck, slip on ice and break your neck, anything. We never know.

 

[EB24]

SeanDavis, just to add a couple of ways, here is what I told could happen to me. Now keep in mind, I have had bleeds so that is a part of it. 1. I could have a major bleed and die due to loss of blood. 2. I and am sure most of you cough extremely hard. I was told that one of these could bring on a heart attack and /or stroke.
So there are more than the three ways. I am sure there are even more, but just remember, we could walk outside and get hit by a truck, slip on ice and break your neck, anything. We never know.

 

[CowTown]

How often do any of you think about death? It seems to cross my mind in some form several times a week I'd say. I imagine if I didn't have CF, it wouldn't cross my mind so frequently. I don't know.

 

[CowTown]

How often do any of you think about death? It seems to cross my mind in some form several times a week I'd say. I imagine if I didn't have CF, it wouldn't cross my mind so frequently. I don't know.

 

[coltsfan715]

Hey there,
This is something I have thought about in length before. Mainly to myself because I figured it would freak my family and friends out if I talked about it to them. I always figured that I would basically slowly suffocate over a prolonged period of time, but I never really asked about it or anything like that. I try not to think about how it will happen to much cause it scares me. When I do think of death/dying it isn't so much how it will happen as when it will happen and how do you know when it is coming - if that makes sense.

Lindsey

 

[coltsfan715]

Hey there,
This is something I have thought about in length before. Mainly to myself because I figured it would freak my family and friends out if I talked about it to them. I always figured that I would basically slowly suffocate over a prolonged period of time, but I never really asked about it or anything like that. I try not to think about how it will happen to much cause it scares me. When I do think of death/dying it isn't so much how it will happen as when it will happen and how do you know when it is coming - if that makes sense.

Lindsey

 

[Allie]

I know it crossed Ry's mind often. he asked our friend Tanya about it a few times. For him, he had to know what was going on. How it was all going to go. He liked to be informed.

Not all people are the same though, there are some people that ask questions, and some prefer not to think about it.

 

[Allie]

I know it crossed Ry's mind often. he asked our friend Tanya about it a few times. For him, he had to know what was going on. How it was all going to go. He liked to be informed.

Not all people are the same though, there are some people that ask questions, and some prefer not to think about it.

 

[Faust]

More people besides cystics/terminally ill people need to think of their potential deaths A LOT more often. Maybe if they thought about it more, they would be nicer to others and be more willing to help others and not be so self centered. Or atleast not do real stupid stuff.

 

[Faust]

More people besides cystics/terminally ill people need to think of their potential deaths A LOT more often. Maybe if they thought about it more, they would be nicer to others and be more willing to help others and not be so self centered. Or atleast not do real stupid stuff.

 

[DebbieC]

Or at least find happiness and have more zest for life!!

 

[DebbieC]

Or at least find happiness and have more zest for life!!

 

[Allie]

Or maybe it wouldn't be such a social taboo, and people would talk about it and be less afraid of it. People spend their whole lives being afraid of death like children on their way to dentist.

 

[Allie]

Or maybe it wouldn't be such a social taboo, and people would talk about it and be less afraid of it. People spend their whole lives being afraid of death like children on their way to dentist.