Waking Up

NYCLawGirl

New member
Hey guys,

I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up from surgery. I know that there will be chest tubes and a breathing tube, but as I've never really experienced either of those before I don't really know what to expect from them.

I guess I'm just asking for some experiences, even though I realize it's a little different for everyone. How did you FEEL post-surgery? How long were you on the vent, and were you awake for any of that? How many days was it before you could remember/think clearly? What's the one thing you would advise someone pre-tx to be prepared for afterward -- the one thing you really wish you'd known ahead of time? Did your lungs feel better than your old CF versions right away or did it take a while to really feel like you could breathe again?

Thanks so much, guys. I feel like a sponge right now -- I just want to absorb as many stories and as much information as I possibly can so that I have some idea of what to expect from a FEELINGS perspective, rather than just a clinical one.

Piper
 

NYCLawGirl

New member
Hey guys,

I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up from surgery. I know that there will be chest tubes and a breathing tube, but as I've never really experienced either of those before I don't really know what to expect from them.

I guess I'm just asking for some experiences, even though I realize it's a little different for everyone. How did you FEEL post-surgery? How long were you on the vent, and were you awake for any of that? How many days was it before you could remember/think clearly? What's the one thing you would advise someone pre-tx to be prepared for afterward -- the one thing you really wish you'd known ahead of time? Did your lungs feel better than your old CF versions right away or did it take a while to really feel like you could breathe again?

Thanks so much, guys. I feel like a sponge right now -- I just want to absorb as many stories and as much information as I possibly can so that I have some idea of what to expect from a FEELINGS perspective, rather than just a clinical one.

Piper
 

NYCLawGirl

New member
Hey guys,

I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up from surgery. I know that there will be chest tubes and a breathing tube, but as I've never really experienced either of those before I don't really know what to expect from them.

I guess I'm just asking for some experiences, even though I realize it's a little different for everyone. How did you FEEL post-surgery? How long were you on the vent, and were you awake for any of that? How many days was it before you could remember/think clearly? What's the one thing you would advise someone pre-tx to be prepared for afterward -- the one thing you really wish you'd known ahead of time? Did your lungs feel better than your old CF versions right away or did it take a while to really feel like you could breathe again?

Thanks so much, guys. I feel like a sponge right now -- I just want to absorb as many stories and as much information as I possibly can so that I have some idea of what to expect from a FEELINGS perspective, rather than just a clinical one.

Piper
 

NYCLawGirl

New member
Hey guys,

I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up from surgery. I know that there will be chest tubes and a breathing tube, but as I've never really experienced either of those before I don't really know what to expect from them.

I guess I'm just asking for some experiences, even though I realize it's a little different for everyone. How did you FEEL post-surgery? How long were you on the vent, and were you awake for any of that? How many days was it before you could remember/think clearly? What's the one thing you would advise someone pre-tx to be prepared for afterward -- the one thing you really wish you'd known ahead of time? Did your lungs feel better than your old CF versions right away or did it take a while to really feel like you could breathe again?

Thanks so much, guys. I feel like a sponge right now -- I just want to absorb as many stories and as much information as I possibly can so that I have some idea of what to expect from a FEELINGS perspective, rather than just a clinical one.

Piper
 

NYCLawGirl

New member
Hey guys,
<br />
<br />I'm sure this has been asked before about a million different ways, but I was just wondering if some of the post-tx'ers would mind sharing their "waking up" stories? I find that this what I'm most nervous about right now, just the uncertainty of what things will be like when I wake up from surgery. I know that there will be chest tubes and a breathing tube, but as I've never really experienced either of those before I don't really know what to expect from them.
<br />
<br />I guess I'm just asking for some experiences, even though I realize it's a little different for everyone. How did you FEEL post-surgery? How long were you on the vent, and were you awake for any of that? How many days was it before you could remember/think clearly? What's the one thing you would advise someone pre-tx to be prepared for afterward -- the one thing you really wish you'd known ahead of time? Did your lungs feel better than your old CF versions right away or did it take a while to really feel like you could breathe again?
<br />
<br />Thanks so much, guys. I feel like a sponge right now -- I just want to absorb as many stories and as much information as I possibly can so that I have some idea of what to expect from a FEELINGS perspective, rather than just a clinical one.
<br />
<br />Piper
 

CountryGirl

New member
Hey there Piper, I'm Anna. I got my tx July of 07. The very first thing I remember was actually when I was still asleep. My mom was talking to the resp tech and asking about the ventilator, she was asking what the different lines were for and he he pointed to the one that showed the machine breathing for me and me breathing over the machine, at that moment I specifically remember trying my hardest to breathe on my own.

After that I remember coming in and out, and my parents standing by my bed, I didn't really have a problem feeling the tube in my throat at this point in time.

When I started to wake up more, I wanted to write but my hands were tied down and that really bothered me. I think they thought I would try to pull the tube out (never would that have happened, I've read too many horror stories).
Finally they realized I wasn't going to do that and they gave me and pen and paper to write with. It was a lot easier to communicate after that and since I woke up in the middle of the night I had to wait a few hours till I could be extubated. That really sucked because I was super thirsty!

I didn't have any pain at all at this time post transplant, they had it all under control. As soon as I was extubated I was able to start to sit up on my own and was sucking on ice chips.

Personally, the only thing that really bothered me was that they took so long to realize I wasn't going to try and extubate myself and that it took a forever to be extubated after I woke up. Other than that everything went really easily!
 

CountryGirl

New member
Hey there Piper, I'm Anna. I got my tx July of 07. The very first thing I remember was actually when I was still asleep. My mom was talking to the resp tech and asking about the ventilator, she was asking what the different lines were for and he he pointed to the one that showed the machine breathing for me and me breathing over the machine, at that moment I specifically remember trying my hardest to breathe on my own.

After that I remember coming in and out, and my parents standing by my bed, I didn't really have a problem feeling the tube in my throat at this point in time.

When I started to wake up more, I wanted to write but my hands were tied down and that really bothered me. I think they thought I would try to pull the tube out (never would that have happened, I've read too many horror stories).
Finally they realized I wasn't going to do that and they gave me and pen and paper to write with. It was a lot easier to communicate after that and since I woke up in the middle of the night I had to wait a few hours till I could be extubated. That really sucked because I was super thirsty!

I didn't have any pain at all at this time post transplant, they had it all under control. As soon as I was extubated I was able to start to sit up on my own and was sucking on ice chips.

Personally, the only thing that really bothered me was that they took so long to realize I wasn't going to try and extubate myself and that it took a forever to be extubated after I woke up. Other than that everything went really easily!
 

CountryGirl

New member
Hey there Piper, I'm Anna. I got my tx July of 07. The very first thing I remember was actually when I was still asleep. My mom was talking to the resp tech and asking about the ventilator, she was asking what the different lines were for and he he pointed to the one that showed the machine breathing for me and me breathing over the machine, at that moment I specifically remember trying my hardest to breathe on my own.

After that I remember coming in and out, and my parents standing by my bed, I didn't really have a problem feeling the tube in my throat at this point in time.

When I started to wake up more, I wanted to write but my hands were tied down and that really bothered me. I think they thought I would try to pull the tube out (never would that have happened, I've read too many horror stories).
Finally they realized I wasn't going to do that and they gave me and pen and paper to write with. It was a lot easier to communicate after that and since I woke up in the middle of the night I had to wait a few hours till I could be extubated. That really sucked because I was super thirsty!

I didn't have any pain at all at this time post transplant, they had it all under control. As soon as I was extubated I was able to start to sit up on my own and was sucking on ice chips.

Personally, the only thing that really bothered me was that they took so long to realize I wasn't going to try and extubate myself and that it took a forever to be extubated after I woke up. Other than that everything went really easily!
 

CountryGirl

New member
Hey there Piper, I'm Anna. I got my tx July of 07. The very first thing I remember was actually when I was still asleep. My mom was talking to the resp tech and asking about the ventilator, she was asking what the different lines were for and he he pointed to the one that showed the machine breathing for me and me breathing over the machine, at that moment I specifically remember trying my hardest to breathe on my own.

After that I remember coming in and out, and my parents standing by my bed, I didn't really have a problem feeling the tube in my throat at this point in time.

When I started to wake up more, I wanted to write but my hands were tied down and that really bothered me. I think they thought I would try to pull the tube out (never would that have happened, I've read too many horror stories).
Finally they realized I wasn't going to do that and they gave me and pen and paper to write with. It was a lot easier to communicate after that and since I woke up in the middle of the night I had to wait a few hours till I could be extubated. That really sucked because I was super thirsty!

I didn't have any pain at all at this time post transplant, they had it all under control. As soon as I was extubated I was able to start to sit up on my own and was sucking on ice chips.

Personally, the only thing that really bothered me was that they took so long to realize I wasn't going to try and extubate myself and that it took a forever to be extubated after I woke up. Other than that everything went really easily!
 

CountryGirl

New member
Hey there Piper, I'm Anna. I got my tx July of 07. The very first thing I remember was actually when I was still asleep. My mom was talking to the resp tech and asking about the ventilator, she was asking what the different lines were for and he he pointed to the one that showed the machine breathing for me and me breathing over the machine, at that moment I specifically remember trying my hardest to breathe on my own.
<br />
<br />After that I remember coming in and out, and my parents standing by my bed, I didn't really have a problem feeling the tube in my throat at this point in time.
<br />
<br />When I started to wake up more, I wanted to write but my hands were tied down and that really bothered me. I think they thought I would try to pull the tube out (never would that have happened, I've read too many horror stories).
<br />Finally they realized I wasn't going to do that and they gave me and pen and paper to write with. It was a lot easier to communicate after that and since I woke up in the middle of the night I had to wait a few hours till I could be extubated. That really sucked because I was super thirsty!
<br />
<br />I didn't have any pain at all at this time post transplant, they had it all under control. As soon as I was extubated I was able to start to sit up on my own and was sucking on ice chips.
<br />
<br />Personally, the only thing that really bothered me was that they took so long to realize I wasn't going to try and extubate myself and that it took a forever to be extubated after I woke up. Other than that everything went really easily!
 

Liza

New member
Anna, you didn't tell her about that first breath. What you had heard/seen on TV and how it really was.
 

Liza

New member
Anna, you didn't tell her about that first breath. What you had heard/seen on TV and how it really was.
 

Liza

New member
Anna, you didn't tell her about that first breath. What you had heard/seen on TV and how it really was.
 

Liza

New member
Anna, you didn't tell her about that first breath. What you had heard/seen on TV and how it really was.
 

Liza

New member
Anna, you didn't tell her about that first breath. What you had heard/seen on TV and how it really was.
 

Lex

New member
Hey Piper...

My first memory post TX was a dream-like state. I was in the ICU and I heard my wife talking to me telling me that they only made two small incisions and that there weren't any complications. I couldn't reply--being so drugged up. I was very comfy. I wasn't aware of the tubes at all. I remember wanting to write and I motioned with my hand to write. But later my wife told me that I fell back asleep when they got me a pen. Oh well....

A few hours later, I woke up for the first time with awareness. The tubes were already gone because they said I was breathing on my own already. I was SO surprised to learn that I could barely talk! I guess the tubes irritate the vocal chords and I had to whisper for a couple days. But at no time was I ever in pain. They gave me a button to push when I needed pain relief. That was FUN!

As for "the first breath"....I never had that experience. It was more like a gradual realization (over an hour or so) that I could breathe without oxygen. It was SO weird. NO OXYGEN. I spent so long dependent on that stuff that to breathe without it was strange. Over the net couple days, I became more used to it.

BTW: there's nothing about the entire experience that I wish I knew before hand. There are some things that are best tackled without prior knowledge. Otherwise you spend way too much time worrying or thinking about the inevitable--

There's nothing about the TX experience that isn't doable. Some isn't easy....but who cares? It's worth it!

Let me know if you have any specific questions....thanks.
 

Lex

New member
Hey Piper...

My first memory post TX was a dream-like state. I was in the ICU and I heard my wife talking to me telling me that they only made two small incisions and that there weren't any complications. I couldn't reply--being so drugged up. I was very comfy. I wasn't aware of the tubes at all. I remember wanting to write and I motioned with my hand to write. But later my wife told me that I fell back asleep when they got me a pen. Oh well....

A few hours later, I woke up for the first time with awareness. The tubes were already gone because they said I was breathing on my own already. I was SO surprised to learn that I could barely talk! I guess the tubes irritate the vocal chords and I had to whisper for a couple days. But at no time was I ever in pain. They gave me a button to push when I needed pain relief. That was FUN!

As for "the first breath"....I never had that experience. It was more like a gradual realization (over an hour or so) that I could breathe without oxygen. It was SO weird. NO OXYGEN. I spent so long dependent on that stuff that to breathe without it was strange. Over the net couple days, I became more used to it.

BTW: there's nothing about the entire experience that I wish I knew before hand. There are some things that are best tackled without prior knowledge. Otherwise you spend way too much time worrying or thinking about the inevitable--

There's nothing about the TX experience that isn't doable. Some isn't easy....but who cares? It's worth it!

Let me know if you have any specific questions....thanks.
 

Lex

New member
Hey Piper...

My first memory post TX was a dream-like state. I was in the ICU and I heard my wife talking to me telling me that they only made two small incisions and that there weren't any complications. I couldn't reply--being so drugged up. I was very comfy. I wasn't aware of the tubes at all. I remember wanting to write and I motioned with my hand to write. But later my wife told me that I fell back asleep when they got me a pen. Oh well....

A few hours later, I woke up for the first time with awareness. The tubes were already gone because they said I was breathing on my own already. I was SO surprised to learn that I could barely talk! I guess the tubes irritate the vocal chords and I had to whisper for a couple days. But at no time was I ever in pain. They gave me a button to push when I needed pain relief. That was FUN!

As for "the first breath"....I never had that experience. It was more like a gradual realization (over an hour or so) that I could breathe without oxygen. It was SO weird. NO OXYGEN. I spent so long dependent on that stuff that to breathe without it was strange. Over the net couple days, I became more used to it.

BTW: there's nothing about the entire experience that I wish I knew before hand. There are some things that are best tackled without prior knowledge. Otherwise you spend way too much time worrying or thinking about the inevitable--

There's nothing about the TX experience that isn't doable. Some isn't easy....but who cares? It's worth it!

Let me know if you have any specific questions....thanks.
 

Lex

New member
Hey Piper...

My first memory post TX was a dream-like state. I was in the ICU and I heard my wife talking to me telling me that they only made two small incisions and that there weren't any complications. I couldn't reply--being so drugged up. I was very comfy. I wasn't aware of the tubes at all. I remember wanting to write and I motioned with my hand to write. But later my wife told me that I fell back asleep when they got me a pen. Oh well....

A few hours later, I woke up for the first time with awareness. The tubes were already gone because they said I was breathing on my own already. I was SO surprised to learn that I could barely talk! I guess the tubes irritate the vocal chords and I had to whisper for a couple days. But at no time was I ever in pain. They gave me a button to push when I needed pain relief. That was FUN!

As for "the first breath"....I never had that experience. It was more like a gradual realization (over an hour or so) that I could breathe without oxygen. It was SO weird. NO OXYGEN. I spent so long dependent on that stuff that to breathe without it was strange. Over the net couple days, I became more used to it.

BTW: there's nothing about the entire experience that I wish I knew before hand. There are some things that are best tackled without prior knowledge. Otherwise you spend way too much time worrying or thinking about the inevitable--

There's nothing about the TX experience that isn't doable. Some isn't easy....but who cares? It's worth it!

Let me know if you have any specific questions....thanks.
 

Lex

New member
Hey Piper...
<br />
<br />My first memory post TX was a dream-like state. I was in the ICU and I heard my wife talking to me telling me that they only made two small incisions and that there weren't any complications. I couldn't reply--being so drugged up. I was very comfy. I wasn't aware of the tubes at all. I remember wanting to write and I motioned with my hand to write. But later my wife told me that I fell back asleep when they got me a pen. Oh well....
<br />
<br />A few hours later, I woke up for the first time with awareness. The tubes were already gone because they said I was breathing on my own already. I was SO surprised to learn that I could barely talk! I guess the tubes irritate the vocal chords and I had to whisper for a couple days. But at no time was I ever in pain. They gave me a button to push when I needed pain relief. That was FUN!
<br />
<br />As for "the first breath"....I never had that experience. It was more like a gradual realization (over an hour or so) that I could breathe without oxygen. It was SO weird. NO OXYGEN. I spent so long dependent on that stuff that to breathe without it was strange. Over the net couple days, I became more used to it.
<br />
<br />BTW: there's nothing about the entire experience that I wish I knew before hand. There are some things that are best tackled without prior knowledge. Otherwise you spend way too much time worrying or thinking about the inevitable--
<br />
<br />There's nothing about the TX experience that isn't doable. Some isn't easy....but who cares? It's worth it!
<br />
<br />Let me know if you have any specific questions....thanks.
 
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