Packers646
New member
Which is the most painful part of the Tx experience? I am listed and have been getting more nervous about the pain/thought of not waking up after surgery. Any info helps
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What hurts the most ??
- Thread starter Packers646
- Start date
Packers646
New member
Which is the most painful part of the Tx experience? I am listed and have been getting more nervous about the pain/thought of not waking up after surgery. Any info helps
Packers646
New member
Which is the most painful part of the Tx experience? I am listed and have been getting more nervous about the pain/thought of not waking up after surgery. Any info helps
Packers646
New member
Which is the most painful part of the Tx experience? I am listed and have been getting more nervous about the pain/thought of not waking up after surgery. Any info helps
Packers646
New member
Which is the most painful part of the Tx experience? I am listed and have been getting more nervous about the pain/thought of not waking up after surgery. Any info helps
No one dies on the table. So, you can ease your mind about not waking up.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
No one dies on the table. So, you can ease your mind about not waking up.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
No one dies on the table. So, you can ease your mind about not waking up.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
No one dies on the table. So, you can ease your mind about not waking up.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
1. Not showering
2. Having the chest tubes and having to call the nurse to go to the bathroom
3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
No one dies on the table. So, you can ease your mind about not waking up.
<br />
<br />For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
<br />
<br />1. Not showering
<br />2. Having the chest tubes and having to call the nurse to go to the bathroom
<br />3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
<br />4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
<br />5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
<br />
<br />For me, there was never that much pain. They give you wonderful drugs that take care of that. The hardest parts were:
<br />
<br />1. Not showering
<br />2. Having the chest tubes and having to call the nurse to go to the bathroom
<br />3. After a few days, you're not on as much pain killers, and therefore, more aware and therefore, you get VERY bored in the small room.
<br />4. Needing patience. It takes time to be able to run. Stand first. Then walk. Then after awhile, you'll run.
<br />5. The "hardest" part is the waiting pre TX, and the dry runs. Dry runs are stunningly hard emotionally. Most of us had one or more dry runs and each one is devastating.
coltsfan715
New member
The chest tubes....
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
coltsfan715
New member
The chest tubes....
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
coltsfan715
New member
The chest tubes....
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
coltsfan715
New member
The chest tubes....
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
Lindsey
coltsfan715
New member
The chest tubes....
<br />
<br />Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
<br />
<br />Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
<br />
<br />So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
<br />
<br />Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
<br />
<br />Lindsey
<br />
<br />Initially for me my incision pain was horrendous but that was because I was not given an epidural during my actual surgery. Once I received one - roughly 6 hours or so after I was out of surgery and awake that pain minimized.
<br />
<br />Initially the chest tubes are not horrendously painful but as days pass and more fluid drains they start to hurt. Removing them was excruciating for me, but it was short lived. Once I got the chest tubes out though moving around became easier and less uncomfortable and overall the whole experience was just much less painful when the chest tubes were out.
<br />
<br />So for me and many people that I have asked the chest tubes rank as one of the worst if not the worst part of the post transplant experience - well the immediate post transplant. That is assuming that there are no other massive issues to be concerned with.
<br />
<br />Overall the process had times of pain but none of that pain was so horrible that it would stop me from doing the transplant again.
<br />
<br />Lindsey
Well saying no one dies on the table is not exactly correct. I spoke to a friend of mine right before he went in for transplant and I never spoke with him again as he died three days later. So for all purposes, to me, he died on the table. With THAT being said, it is a very small percentage of patients who do not wake up from surgery, so I too wouldn't worry about that. Try to focus more on the positives. Things you want to do after you get your new lungs. Once you have nothing holding you back, how will you live your life?! It's exciting!
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
Well saying no one dies on the table is not exactly correct. I spoke to a friend of mine right before he went in for transplant and I never spoke with him again as he died three days later. So for all purposes, to me, he died on the table. With THAT being said, it is a very small percentage of patients who do not wake up from surgery, so I too wouldn't worry about that. Try to focus more on the positives. Things you want to do after you get your new lungs. Once you have nothing holding you back, how will you live your life?! It's exciting!
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
Well saying no one dies on the table is not exactly correct. I spoke to a friend of mine right before he went in for transplant and I never spoke with him again as he died three days later. So for all purposes, to me, he died on the table. With THAT being said, it is a very small percentage of patients who do not wake up from surgery, so I too wouldn't worry about that. Try to focus more on the positives. Things you want to do after you get your new lungs. Once you have nothing holding you back, how will you live your life?! It's exciting!
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
Well saying no one dies on the table is not exactly correct. I spoke to a friend of mine right before he went in for transplant and I never spoke with him again as he died three days later. So for all purposes, to me, he died on the table. With THAT being said, it is a very small percentage of patients who do not wake up from surgery, so I too wouldn't worry about that. Try to focus more on the positives. Things you want to do after you get your new lungs. Once you have nothing holding you back, how will you live your life?! It's exciting!
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
Well saying no one dies on the table is not exactly correct. I spoke to a friend of mine right before he went in for transplant and I never spoke with him again as he died three days later. So for all purposes, to me, he died on the table. With THAT being said, it is a very small percentage of patients who do not wake up from surgery, so I too wouldn't worry about that. Try to focus more on the positives. Things you want to do after you get your new lungs. Once you have nothing holding you back, how will you live your life?! It's exciting!
<br />
<br />I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
<br />
<br />Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.
<br />
<br />I agree that the waiting is the worse part of the whole process. Waiting for the call. Finding the patience to wait to feel and look like yourself again. Waiting to get your strength back. Waiting for your PFTs to get to 100%. Basically the entire transplant process is one large game in waiting.
<br />
<br />Everyone has a different experience. I was not in much pain at all (the doctor's were surprised enough that they kept asking: "are you SURE you aren't in more pain?!"). So for me, 2 Percocets every 4 hours was enough to manage my pain. After 10 days I was only on Extra Strength Tylenol and one Percocet at bed. And about a week after that just Tylenol.