after transplant questions

M

musclemania70

New member
after transplant:

do you still have a constant 'hoarse throat' voice that is really annoying?

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

thanks..
 
M

musclemania70

New member
after transplant:

do you still have a constant 'hoarse throat' voice that is really annoying?

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

thanks..
 
M

musclemania70

New member
after transplant:
<br />
<br />do you still have a constant 'hoarse throat' voice that is really annoying?
<br />
<br />do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?
<br />
<br />do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?
<br />
<br />do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?
<br />
<br />thanks..
 
S

senatorgraham

New member
After transplant:

Transplantation varies from person to person, and each person experiances it differently.


"Do you still have a constant 'hoarse throat' voice that is really annoying?"

I had some minor (very minor) issues with my throat the few weeks following transplant, and then it was not an issue.


"Do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?"

No. After some recovery period, and work-"Lungs, use or lose em"-I have no issues doing things all day (and it is a great feeling). Again, this may vary from person to person.

I was out of the hospital on the morning of the 14th day.


"Do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?"

One may have these types of feelings, but I chalked it up to years of conditioning to do so. And in time it went away.


"Do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?"


I didn't.

"Thanks..."

Your welcome, I hope it helps!
 
S

senatorgraham

New member
After transplant:

Transplantation varies from person to person, and each person experiances it differently.


"Do you still have a constant 'hoarse throat' voice that is really annoying?"

I had some minor (very minor) issues with my throat the few weeks following transplant, and then it was not an issue.


"Do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?"

No. After some recovery period, and work-"Lungs, use or lose em"-I have no issues doing things all day (and it is a great feeling). Again, this may vary from person to person.

I was out of the hospital on the morning of the 14th day.


"Do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?"

One may have these types of feelings, but I chalked it up to years of conditioning to do so. And in time it went away.


"Do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?"


I didn't.

"Thanks..."

Your welcome, I hope it helps!
 
S

senatorgraham

New member
After transplant:
<br />
<br />Transplantation varies from person to person, and each person experiances it differently.
<br />
<br />
<br />"Do you still have a constant 'hoarse throat' voice that is really annoying?"
<br />
<br />I had some minor (very minor) issues with my throat the few weeks following transplant, and then it was not an issue.
<br />
<br />
<br />"Do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?"
<br />
<br />No. After some recovery period, and work-"Lungs, use or lose em"-I have no issues doing things all day (and it is a great feeling). Again, this may vary from person to person.
<br />
<br />I was out of the hospital on the morning of the 14th day.
<br />
<br />
<br />"Do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?"
<br />
<br />One may have these types of feelings, but I chalked it up to years of conditioning to do so. And in time it went away.
<br />
<br />
<br />"Do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?"
<br />
<br />
<br />I didn't.
<br />
<br />"Thanks..."
<br />
<br />Your welcome, I hope it helps!
 
L

Lex

New member
I think I may be the exception as I've been very blessed, but hey....here's my story.

Do you still have a constant 'hoarse throat' voice that is really annoying?

Not at all. I never cough anymore.

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

I can't tell you the last time I was exhausted. Though, I remember feeling this way after a coughing fit, I am now training for the 2010 NYC Marathon. Anything is possible.

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

Treatments don't exist for me anymore. I don't wake up at all and there's nothing to clear out. My new lungs are CF free.

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

I remember those days.....but those days are over once I got my TX. I wake up, ready for a run. It's the greatest thing. I wish you luck.
 
L

Lex

New member
I think I may be the exception as I've been very blessed, but hey....here's my story.

Do you still have a constant 'hoarse throat' voice that is really annoying?

Not at all. I never cough anymore.

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

I can't tell you the last time I was exhausted. Though, I remember feeling this way after a coughing fit, I am now training for the 2010 NYC Marathon. Anything is possible.

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

Treatments don't exist for me anymore. I don't wake up at all and there's nothing to clear out. My new lungs are CF free.

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

I remember those days.....but those days are over once I got my TX. I wake up, ready for a run. It's the greatest thing. I wish you luck.
 
L

Lex

New member
I think I may be the exception as I've been very blessed, but hey....here's my story.
<br />
<br />Do you still have a constant 'hoarse throat' voice that is really annoying?
<br />
<br />Not at all. I never cough anymore.
<br />
<br />do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?
<br />
<br />I can't tell you the last time I was exhausted. Though, I remember feeling this way after a coughing fit, I am now training for the 2010 NYC Marathon. Anything is possible.
<br />
<br />do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?
<br />
<br />Treatments don't exist for me anymore. I don't wake up at all and there's nothing to clear out. My new lungs are CF free.
<br />
<br />do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?
<br />
<br />I remember those days.....but those days are over once I got my TX. I wake up, ready for a run. It's the greatest thing. I wish you luck.
 
M

musclemania70

New member
Phew! What a life to look forward to!
I know not everyone gets this chance, but if I did, I would surely appreciate the chance to feel free!
Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!

thanks for sharing your experiences!
 
M

musclemania70

New member
Phew! What a life to look forward to!
I know not everyone gets this chance, but if I did, I would surely appreciate the chance to feel free!
Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!

thanks for sharing your experiences!
 
M

musclemania70

New member
Phew! What a life to look forward to!
<br />I know not everyone gets this chance, but if I did, I would surely appreciate the chance to feel free!
<br />Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!
<br />
<br />thanks for sharing your experiences!
 
K

KrazyKat

New member
wow this thread is an eye opener for me, i haven't had my transplant yet, but am in the process of being transferred to the transplant team, but it's my answers to your questions that have me baffled!!

Do you still have a constant 'hoarse throat' voice that is really annoying?

Um unless i've just come off IV's when i actually lose my voice for a few days, my voice is clear, so clear in fact i sing all the time. My cats love it, not sure about the neighbours :)

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

Hmmm, not sure if it's just because i'm adaptable and am therefore used to being somewhat tired? but i work full time and look after my own acre of land, prepare all my own meals, do all my own housework (i live alone and am single) and run around to the hospital, chemists etc every other day, and i have to literally FORCE myself to go to bed at night and often can't sleep.

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

This has never happened to me, once i get to sleep i sleep like a log until the alarm wakes me.

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

Again, no, never have. I have to force myself to do my treatments coz i just can't be bothered, often they're not done until late at night, sometimes not at all. I do cough a bit in the morning, maybe bring up 3-6 'chunks' then it's all over apart from sporadic mostly dry coughing throughout the day.

I am beginning to wonder why it is that i don't seem to be like other CFers and am i really ready for a transplant? How reliable is FEV1 for actually telling the docs how sick we are? Is it possible my technique at blowing on the spiro is just crappy?
 
K

KrazyKat

New member
wow this thread is an eye opener for me, i haven't had my transplant yet, but am in the process of being transferred to the transplant team, but it's my answers to your questions that have me baffled!!

Do you still have a constant 'hoarse throat' voice that is really annoying?

Um unless i've just come off IV's when i actually lose my voice for a few days, my voice is clear, so clear in fact i sing all the time. My cats love it, not sure about the neighbours :)

do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?

Hmmm, not sure if it's just because i'm adaptable and am therefore used to being somewhat tired? but i work full time and look after my own acre of land, prepare all my own meals, do all my own housework (i live alone and am single) and run around to the hospital, chemists etc every other day, and i have to literally FORCE myself to go to bed at night and often can't sleep.

do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?

This has never happened to me, once i get to sleep i sleep like a log until the alarm wakes me.

do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?

Again, no, never have. I have to force myself to do my treatments coz i just can't be bothered, often they're not done until late at night, sometimes not at all. I do cough a bit in the morning, maybe bring up 3-6 'chunks' then it's all over apart from sporadic mostly dry coughing throughout the day.

I am beginning to wonder why it is that i don't seem to be like other CFers and am i really ready for a transplant? How reliable is FEV1 for actually telling the docs how sick we are? Is it possible my technique at blowing on the spiro is just crappy?
 
K

KrazyKat

New member
wow this thread is an eye opener for me, i haven't had my transplant yet, but am in the process of being transferred to the transplant team, but it's my answers to your questions that have me baffled!!
<br />
<br />Do you still have a constant 'hoarse throat' voice that is really annoying?
<br />
<br />Um unless i've just come off IV's when i actually lose my voice for a few days, my voice is clear, so clear in fact i sing all the time. My cats love it, not sure about the neighbours :)
<br />
<br />do you still get exhausted after doing 1 errand or have to limit yourself on activities based on how much energy you'd be using during the day?
<br />
<br />Hmmm, not sure if it's just because i'm adaptable and am therefore used to being somewhat tired? but i work full time and look after my own acre of land, prepare all my own meals, do all my own housework (i live alone and am single) and run around to the hospital, chemists etc every other day, and i have to literally FORCE myself to go to bed at night and often can't sleep.
<br />
<br />do you still wake up in the middle of the night out of breath and wondering if you should do a treatment to 'clear your chest'?
<br />
<br />This has never happened to me, once i get to sleep i sleep like a log until the alarm wakes me.
<br />
<br />do you still wakeup feeling really congested and the only thing on your mind is getting your nebs ready for your first treatment?
<br />
<br />Again, no, never have. I have to force myself to do my treatments coz i just can't be bothered, often they're not done until late at night, sometimes not at all. I do cough a bit in the morning, maybe bring up 3-6 'chunks' then it's all over apart from sporadic mostly dry coughing throughout the day.
<br />
<br />I am beginning to wonder why it is that i don't seem to be like other CFers and am i really ready for a transplant? How reliable is FEV1 for actually telling the docs how sick we are? Is it possible my technique at blowing on the spiro is just crappy?
 
T

twitch

New member
1. Nope

2. Never

3. I probably have more fingers than the amount of times I picked up a neb post Tx. And that is almost a 15 year time span.

4. Hell no. I sleep great!

Ok, I know the answers were short and to the point but I think you'll understand. It's nearly indescribable so you have to live through it to understand.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>

Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!

thanks for sharing your experiences!</end quote></div>
This is the exact point that I try to make all the time. If a CF person could live without all of the chains for just a short period of time is that not a successful Tx? I think it is very successful. To just have the feeling of "freedom" for a short time is worlds better than never getting the opportunity at all.

You're welcome! And good luck with everything.

<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
T

twitch

New member
1. Nope

2. Never

3. I probably have more fingers than the amount of times I picked up a neb post Tx. And that is almost a 15 year time span.

4. Hell no. I sleep great!

Ok, I know the answers were short and to the point but I think you'll understand. It's nearly indescribable so you have to live through it to understand.

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>

Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!

thanks for sharing your experiences!</end quote>
This is the exact point that I try to make all the time. If a CF person could live without all of the chains for just a short period of time is that not a successful Tx? I think it is very successful. To just have the feeling of "freedom" for a short time is worlds better than never getting the opportunity at all.

You're welcome! And good luck with everything.

<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
T

twitch

New member
1. Nope
<br />
<br />2. Never
<br />
<br />3. I probably have more fingers than the amount of times I picked up a neb post Tx. And that is almost a 15 year time span.
<br />
<br />4. Hell no. I sleep great!
<br />
<br />Ok, I know the answers were short and to the point but I think you'll understand. It's nearly indescribable so you have to live through it to understand.
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i>
<br />
<br />Even if the freedom lasted only a week and I wouldn't have to feel horrible for a DAY, I'd be elated!
<br />
<br />thanks for sharing your experiences!</end quote>
<br />This is the exact point that I try to make all the time. If a CF person could live without all of the chains for just a short period of time is that not a successful Tx? I think it is very successful. To just have the feeling of "freedom" for a short time is worlds better than never getting the opportunity at all.
<br />
<br />You're welcome! And good luck with everything.
<br />
<br /><img src="i/expressions/face-icon-small-happy.gif" border="0">
 
T

TwistedTanya

New member
I had a very tough transplant with some setbacks and extra surgeries. Some of my problems are rare and was the first time my hospital had ever come across the problem. So it was tough in the beginning and took a lot of work to get to where I could breathe well and not have to get stuff sucked out of me but most people who went there see to be out before 2 weeks. I was in 52 days and ended up returning after a month too. However, I'm 10 months out and things have greatly improved. I never FEEL like I need a treatment but my docs have me on inhaled Colistin 2 times a day. I think it lowers after a year. Recently I've gone back on Xopenx and HyperTonic Saline b/c I get a little bit of junk and actually can't cough it up most of the time so they want me to do those to help me cough it up or lossen it. Still don't cough much and can't usually tell there is anything in there. It's amazing how much more I can do! In the beginning when we were out and about, I felt like I was supposed to go home and do a treatment. Now I'm getting more used to not having to do one and enjoying spending the day out and not having to go home b/c I need to do a treatment or b/c I feel sick. It's a wonderful thing! I'm saving loads in kleenex now too, hehe. No more big gross phlegm balls or coghing your head off. Just want you to know that when you get a transplant, if things don't go as smoothly as you hoped and you get worried, give it time. I thought I was never gonna make it to a good spot and felt like giving up b/c I kept having problems. I got reopened 2 times!!!! But I hung in and now I am enjoying my new life with new lungs! You have to stay strong! Most likely you'll have it way easier then me though so don't worry too much. It's worth it!
 
T

TwistedTanya

New member
I had a very tough transplant with some setbacks and extra surgeries. Some of my problems are rare and was the first time my hospital had ever come across the problem. So it was tough in the beginning and took a lot of work to get to where I could breathe well and not have to get stuff sucked out of me but most people who went there see to be out before 2 weeks. I was in 52 days and ended up returning after a month too. However, I'm 10 months out and things have greatly improved. I never FEEL like I need a treatment but my docs have me on inhaled Colistin 2 times a day. I think it lowers after a year. Recently I've gone back on Xopenx and HyperTonic Saline b/c I get a little bit of junk and actually can't cough it up most of the time so they want me to do those to help me cough it up or lossen it. Still don't cough much and can't usually tell there is anything in there. It's amazing how much more I can do! In the beginning when we were out and about, I felt like I was supposed to go home and do a treatment. Now I'm getting more used to not having to do one and enjoying spending the day out and not having to go home b/c I need to do a treatment or b/c I feel sick. It's a wonderful thing! I'm saving loads in kleenex now too, hehe. No more big gross phlegm balls or coghing your head off. Just want you to know that when you get a transplant, if things don't go as smoothly as you hoped and you get worried, give it time. I thought I was never gonna make it to a good spot and felt like giving up b/c I kept having problems. I got reopened 2 times!!!! But I hung in and now I am enjoying my new life with new lungs! You have to stay strong! Most likely you'll have it way easier then me though so don't worry too much. It's worth it!
 
You must log in or register to reply here.
Top