Laid up post TX

Lex · May 17, 2009

Hey guys...I'm getting ready to take the plunge--one more day of testing and then they will decide whether to list me. I have this vision of being laid up post TX on my couch at home for months and months. I know after the TX I'll be in the hospital and a rehab center for a few weeks (if all goes well)....but then I visualize myself laying around because of the healing process.

My question is, how is your quality of life a few weeks after TX and you're back home? Are your ribs so sore you can't even walk without grimacing? I heard you can't lift anything more than 5 pounds for a while, but how long? I know everyone is different and everyone will heal differently, but I wanted to get a sample of what everyone in here experienced. I think I read that after 6 months, if all goes well, you're well on your way to a better quality of life. True?

Oh, one more question: How quickly after waking up post TX did you "feel" like a different person? One person recently told me that when she woke up, she noticed the difference with her first breath. That's exciting to me. But, I wanted to see if that experience is unique. Thanks guys!

Lex · May 17, 2009

Hey guys...I'm getting ready to take the plunge--one more day of testing and then they will decide whether to list me. I have this vision of being laid up post TX on my couch at home for months and months. I know after the TX I'll be in the hospital and a rehab center for a few weeks (if all goes well)....but then I visualize myself laying around because of the healing process.

My question is, how is your quality of life a few weeks after TX and you're back home? Are your ribs so sore you can't even walk without grimacing? I heard you can't lift anything more than 5 pounds for a while, but how long? I know everyone is different and everyone will heal differently, but I wanted to get a sample of what everyone in here experienced. I think I read that after 6 months, if all goes well, you're well on your way to a better quality of life. True?

Oh, one more question: How quickly after waking up post TX did you "feel" like a different person? One person recently told me that when she woke up, she noticed the difference with her first breath. That's exciting to me. But, I wanted to see if that experience is unique. Thanks guys!

Lex · May 17, 2009

Hey guys...I'm getting ready to take the plunge--one more day of testing and then they will decide whether to list me. I have this vision of being laid up post TX on my couch at home for months and months. I know after the TX I'll be in the hospital and a rehab center for a few weeks (if all goes well)....but then I visualize myself laying around because of the healing process.

My question is, how is your quality of life a few weeks after TX and you're back home? Are your ribs so sore you can't even walk without grimacing? I heard you can't lift anything more than 5 pounds for a while, but how long? I know everyone is different and everyone will heal differently, but I wanted to get a sample of what everyone in here experienced. I think I read that after 6 months, if all goes well, you're well on your way to a better quality of life. True?

Oh, one more question: How quickly after waking up post TX did you "feel" like a different person? One person recently told me that when she woke up, she noticed the difference with her first breath. That's exciting to me. But, I wanted to see if that experience is unique. Thanks guys!

Lex · May 17, 2009

Hey guys...I'm getting ready to take the plunge--one more day of testing and then they will decide whether to list me. I have this vision of being laid up post TX on my couch at home for months and months. I know after the TX I'll be in the hospital and a rehab center for a few weeks (if all goes well)....but then I visualize myself laying around because of the healing process.

My question is, how is your quality of life a few weeks after TX and you're back home? Are your ribs so sore you can't even walk without grimacing? I heard you can't lift anything more than 5 pounds for a while, but how long? I know everyone is different and everyone will heal differently, but I wanted to get a sample of what everyone in here experienced. I think I read that after 6 months, if all goes well, you're well on your way to a better quality of life. True?

Oh, one more question: How quickly after waking up post TX did you "feel" like a different person? One person recently told me that when she woke up, she noticed the difference with her first breath. That's exciting to me. But, I wanted to see if that experience is unique. Thanks guys!

Lex · May 17, 2009

Hey guys...I'm getting ready to take the plunge--one more day of testing and then they will decide whether to list me. I have this vision of being laid up post TX on my couch at home for months and months. I know after the TX I'll be in the hospital and a rehab center for a few weeks (if all goes well)....but then I visualize myself laying around because of the healing process.
 
 My question is, how is your quality of life a few weeks after TX and you're back home? Are your ribs so sore you can't even walk without grimacing? I heard you can't lift anything more than 5 pounds for a while, but how long? I know everyone is different and everyone will heal differently, but I wanted to get a sample of what everyone in here experienced. I think I read that after 6 months, if all goes well, you're well on your way to a better quality of life. True?
 
 Oh, one more question: How quickly after waking up post TX did you "feel" like a different person? One person recently told me that when she woke up, she noticed the difference with her first breath. That's exciting to me. But, I wanted to see if that experience is unique. Thanks guys!

Joanne · May 17, 2009

Lex,

Most centers will not allow you to lay around after tx. You have to work out, stay busy, and those lungs need exercise. Walking, running, basketball, tennis etc.

Ribs sore....I don't think so. Your cut line may hurt some, but they know to give pain meds, because if you are in pain you don't want to exercise. You can walk, and you won't grimace. Yes lifting is an issue, your center will give you the latest info on that. After 6 months you are feeling pretty good? Yes, it may be sooner, or longer. For me I really took off when I rode my nieces motorbike for the first time in my life. Then I really took off. I think I did that at 10 months. Walking feels great and so does running.

You feel like a new person after waking up....well, I am not sure how everyone does, but I was so taped up and chest tubes, it was not real comfy. After all chest tubes were out, then I felt great.

What center are you going to?

Joanne

Joanne · May 17, 2009

Lex,

Most centers will not allow you to lay around after tx. You have to work out, stay busy, and those lungs need exercise. Walking, running, basketball, tennis etc.

Ribs sore....I don't think so. Your cut line may hurt some, but they know to give pain meds, because if you are in pain you don't want to exercise. You can walk, and you won't grimace. Yes lifting is an issue, your center will give you the latest info on that. After 6 months you are feeling pretty good? Yes, it may be sooner, or longer. For me I really took off when I rode my nieces motorbike for the first time in my life. Then I really took off. I think I did that at 10 months. Walking feels great and so does running.

You feel like a new person after waking up....well, I am not sure how everyone does, but I was so taped up and chest tubes, it was not real comfy. After all chest tubes were out, then I felt great.

What center are you going to?

Joanne

Joanne · May 17, 2009

Lex,

Most centers will not allow you to lay around after tx. You have to work out, stay busy, and those lungs need exercise. Walking, running, basketball, tennis etc.

Ribs sore....I don't think so. Your cut line may hurt some, but they know to give pain meds, because if you are in pain you don't want to exercise. You can walk, and you won't grimace. Yes lifting is an issue, your center will give you the latest info on that. After 6 months you are feeling pretty good? Yes, it may be sooner, or longer. For me I really took off when I rode my nieces motorbike for the first time in my life. Then I really took off. I think I did that at 10 months. Walking feels great and so does running.

You feel like a new person after waking up....well, I am not sure how everyone does, but I was so taped up and chest tubes, it was not real comfy. After all chest tubes were out, then I felt great.

What center are you going to?

Joanne

Joanne · May 17, 2009

Lex,

Most centers will not allow you to lay around after tx. You have to work out, stay busy, and those lungs need exercise. Walking, running, basketball, tennis etc.

Ribs sore....I don't think so. Your cut line may hurt some, but they know to give pain meds, because if you are in pain you don't want to exercise. You can walk, and you won't grimace. Yes lifting is an issue, your center will give you the latest info on that. After 6 months you are feeling pretty good? Yes, it may be sooner, or longer. For me I really took off when I rode my nieces motorbike for the first time in my life. Then I really took off. I think I did that at 10 months. Walking feels great and so does running.

You feel like a new person after waking up....well, I am not sure how everyone does, but I was so taped up and chest tubes, it was not real comfy. After all chest tubes were out, then I felt great.

What center are you going to?

Joanne

Joanne · May 17, 2009

Lex,
 
 Most centers will not allow you to lay around after tx. You have to work out, stay busy, and those lungs need exercise. Walking, running, basketball, tennis etc.
 
 Ribs sore....I don't think so. Your cut line may hurt some, but they know to give pain meds, because if you are in pain you don't want to exercise. You can walk, and you won't grimace. Yes lifting is an issue, your center will give you the latest info on that. After 6 months you are feeling pretty good? Yes, it may be sooner, or longer. For me I really took off when I rode my nieces motorbike for the first time in my life. Then I really took off. I think I did that at 10 months. Walking feels great and so does running.
 
 You feel like a new person after waking up....well, I am not sure how everyone does, but I was so taped up and chest tubes, it was not real comfy. After all chest tubes were out, then I felt great.
 
 What center are you going to?
 
 Joanne

coltsfan715 · May 18, 2009

I agree with a LOT of what Joanne said. I was so upset by the time I left the hospital cause I was exhausted I just wanted to lay down and sleep and they would rarely leave me alone while in the hospital. I was extubated about 2-3 hours after my transplant and was standing up and walking in place within a few hours after that.

With lungs it is up to the patient to get them fully expanded so you HAVE to get up and do rehab and exercise and just move. That and the more you lay around it seems the more likely you can be to get infections in the immediate post transplant. At least by what I have been told and have seen.

I was in the hospital for 12 days post transplant and then once I came home I had docs appts most everyday - rehab 3 times a week for about 1.5 hours each time. I was so excited I could do things that I tried alot of things.

The one thing I will say though is I personally was hesitant to really go out for a while. I stayed at home mostly for the first month or so. If I needed to go anywhere I went at off times when they would not be busy. I always had a mask as well for the first probably 4-6 months until my clinic told me I could start going out without it.

As for feeling better immediately - I didn't I felt mostly congested the first few days post transplant. A LOT of fluid still needed to drain off my lungs through the chest tubes. I am not sure if this was partly because of my getting off the vent so fast either. I did not get my first amazing breathe until about 3-4 days post transplant after a bronch. My doc woke me up and just whispered for me to breathe and it was like heaven. Until that point I was semi paranoid that if I fell asleep I wouldn't breathe on my own or what have you. That being said I did notice that when I slept for the first time post transplant and off the vent that it was the most incredible sleep I had gotten in years. I slept for about 3 hours and woke up feeling like I had gotten a full nights sleep. So with that I knew my lungs were on their way to getting better but initially it didn't feel that way.

I am simply telling you this because I went into the transplant thinking my first breathe was going to be amazingly different and I woke up in a total panic that something had gone horribly wrong when I couldn't breathe comfortably.

Also agree with Joanne - once the chest tubes were removed things were well on their way to getting better. For me the worst day was the second day in regards to pain but after that it got progressively better. Also as for the lifting for my center it was 10 lbs - nothing over 10 lbs for 2 months. It didn't matter for me anyway because the way my incisions were I could barely flush the toilet without assistance so I had to build back my strength anyway as my muscles healed from the incisions.

Lindsey

coltsfan715 · May 18, 2009

I agree with a LOT of what Joanne said. I was so upset by the time I left the hospital cause I was exhausted I just wanted to lay down and sleep and they would rarely leave me alone while in the hospital. I was extubated about 2-3 hours after my transplant and was standing up and walking in place within a few hours after that.

With lungs it is up to the patient to get them fully expanded so you HAVE to get up and do rehab and exercise and just move. That and the more you lay around it seems the more likely you can be to get infections in the immediate post transplant. At least by what I have been told and have seen.

I was in the hospital for 12 days post transplant and then once I came home I had docs appts most everyday - rehab 3 times a week for about 1.5 hours each time. I was so excited I could do things that I tried alot of things.

The one thing I will say though is I personally was hesitant to really go out for a while. I stayed at home mostly for the first month or so. If I needed to go anywhere I went at off times when they would not be busy. I always had a mask as well for the first probably 4-6 months until my clinic told me I could start going out without it.

As for feeling better immediately - I didn't I felt mostly congested the first few days post transplant. A LOT of fluid still needed to drain off my lungs through the chest tubes. I am not sure if this was partly because of my getting off the vent so fast either. I did not get my first amazing breathe until about 3-4 days post transplant after a bronch. My doc woke me up and just whispered for me to breathe and it was like heaven. Until that point I was semi paranoid that if I fell asleep I wouldn't breathe on my own or what have you. That being said I did notice that when I slept for the first time post transplant and off the vent that it was the most incredible sleep I had gotten in years. I slept for about 3 hours and woke up feeling like I had gotten a full nights sleep. So with that I knew my lungs were on their way to getting better but initially it didn't feel that way.

I am simply telling you this because I went into the transplant thinking my first breathe was going to be amazingly different and I woke up in a total panic that something had gone horribly wrong when I couldn't breathe comfortably.

Also agree with Joanne - once the chest tubes were removed things were well on their way to getting better. For me the worst day was the second day in regards to pain but after that it got progressively better. Also as for the lifting for my center it was 10 lbs - nothing over 10 lbs for 2 months. It didn't matter for me anyway because the way my incisions were I could barely flush the toilet without assistance so I had to build back my strength anyway as my muscles healed from the incisions.

Lindsey

coltsfan715 · May 18, 2009

I agree with a LOT of what Joanne said. I was so upset by the time I left the hospital cause I was exhausted I just wanted to lay down and sleep and they would rarely leave me alone while in the hospital. I was extubated about 2-3 hours after my transplant and was standing up and walking in place within a few hours after that.

With lungs it is up to the patient to get them fully expanded so you HAVE to get up and do rehab and exercise and just move. That and the more you lay around it seems the more likely you can be to get infections in the immediate post transplant. At least by what I have been told and have seen.

I was in the hospital for 12 days post transplant and then once I came home I had docs appts most everyday - rehab 3 times a week for about 1.5 hours each time. I was so excited I could do things that I tried alot of things.

The one thing I will say though is I personally was hesitant to really go out for a while. I stayed at home mostly for the first month or so. If I needed to go anywhere I went at off times when they would not be busy. I always had a mask as well for the first probably 4-6 months until my clinic told me I could start going out without it.

As for feeling better immediately - I didn't I felt mostly congested the first few days post transplant. A LOT of fluid still needed to drain off my lungs through the chest tubes. I am not sure if this was partly because of my getting off the vent so fast either. I did not get my first amazing breathe until about 3-4 days post transplant after a bronch. My doc woke me up and just whispered for me to breathe and it was like heaven. Until that point I was semi paranoid that if I fell asleep I wouldn't breathe on my own or what have you. That being said I did notice that when I slept for the first time post transplant and off the vent that it was the most incredible sleep I had gotten in years. I slept for about 3 hours and woke up feeling like I had gotten a full nights sleep. So with that I knew my lungs were on their way to getting better but initially it didn't feel that way.

I am simply telling you this because I went into the transplant thinking my first breathe was going to be amazingly different and I woke up in a total panic that something had gone horribly wrong when I couldn't breathe comfortably.

Also agree with Joanne - once the chest tubes were removed things were well on their way to getting better. For me the worst day was the second day in regards to pain but after that it got progressively better. Also as for the lifting for my center it was 10 lbs - nothing over 10 lbs for 2 months. It didn't matter for me anyway because the way my incisions were I could barely flush the toilet without assistance so I had to build back my strength anyway as my muscles healed from the incisions.

Lindsey

coltsfan715 · May 18, 2009

I agree with a LOT of what Joanne said. I was so upset by the time I left the hospital cause I was exhausted I just wanted to lay down and sleep and they would rarely leave me alone while in the hospital. I was extubated about 2-3 hours after my transplant and was standing up and walking in place within a few hours after that.

With lungs it is up to the patient to get them fully expanded so you HAVE to get up and do rehab and exercise and just move. That and the more you lay around it seems the more likely you can be to get infections in the immediate post transplant. At least by what I have been told and have seen.

I was in the hospital for 12 days post transplant and then once I came home I had docs appts most everyday - rehab 3 times a week for about 1.5 hours each time. I was so excited I could do things that I tried alot of things.

The one thing I will say though is I personally was hesitant to really go out for a while. I stayed at home mostly for the first month or so. If I needed to go anywhere I went at off times when they would not be busy. I always had a mask as well for the first probably 4-6 months until my clinic told me I could start going out without it.

As for feeling better immediately - I didn't I felt mostly congested the first few days post transplant. A LOT of fluid still needed to drain off my lungs through the chest tubes. I am not sure if this was partly because of my getting off the vent so fast either. I did not get my first amazing breathe until about 3-4 days post transplant after a bronch. My doc woke me up and just whispered for me to breathe and it was like heaven. Until that point I was semi paranoid that if I fell asleep I wouldn't breathe on my own or what have you. That being said I did notice that when I slept for the first time post transplant and off the vent that it was the most incredible sleep I had gotten in years. I slept for about 3 hours and woke up feeling like I had gotten a full nights sleep. So with that I knew my lungs were on their way to getting better but initially it didn't feel that way.

I am simply telling you this because I went into the transplant thinking my first breathe was going to be amazingly different and I woke up in a total panic that something had gone horribly wrong when I couldn't breathe comfortably.

Also agree with Joanne - once the chest tubes were removed things were well on their way to getting better. For me the worst day was the second day in regards to pain but after that it got progressively better. Also as for the lifting for my center it was 10 lbs - nothing over 10 lbs for 2 months. It didn't matter for me anyway because the way my incisions were I could barely flush the toilet without assistance so I had to build back my strength anyway as my muscles healed from the incisions.

Lindsey

coltsfan715 · May 18, 2009

I agree with a LOT of what Joanne said. I was so upset by the time I left the hospital cause I was exhausted I just wanted to lay down and sleep and they would rarely leave me alone while in the hospital. I was extubated about 2-3 hours after my transplant and was standing up and walking in place within a few hours after that.
 
 With lungs it is up to the patient to get them fully expanded so you HAVE to get up and do rehab and exercise and just move. That and the more you lay around it seems the more likely you can be to get infections in the immediate post transplant. At least by what I have been told and have seen.
 
 I was in the hospital for 12 days post transplant and then once I came home I had docs appts most everyday - rehab 3 times a week for about 1.5 hours each time. I was so excited I could do things that I tried alot of things.
 
 The one thing I will say though is I personally was hesitant to really go out for a while. I stayed at home mostly for the first month or so. If I needed to go anywhere I went at off times when they would not be busy. I always had a mask as well for the first probably 4-6 months until my clinic told me I could start going out without it.
 
 As for feeling better immediately - I didn't I felt mostly congested the first few days post transplant. A LOT of fluid still needed to drain off my lungs through the chest tubes. I am not sure if this was partly because of my getting off the vent so fast either. I did not get my first amazing breathe until about 3-4 days post transplant after a bronch. My doc woke me up and just whispered for me to breathe and it was like heaven. Until that point I was semi paranoid that if I fell asleep I wouldn't breathe on my own or what have you. That being said I did notice that when I slept for the first time post transplant and off the vent that it was the most incredible sleep I had gotten in years. I slept for about 3 hours and woke up feeling like I had gotten a full nights sleep. So with that I knew my lungs were on their way to getting better but initially it didn't feel that way.
 
 I am simply telling you this because I went into the transplant thinking my first breathe was going to be amazingly different and I woke up in a total panic that something had gone horribly wrong when I couldn't breathe comfortably.
 
 Also agree with Joanne - once the chest tubes were removed things were well on their way to getting better. For me the worst day was the second day in regards to pain but after that it got progressively better. Also as for the lifting for my center it was 10 lbs - nothing over 10 lbs for 2 months. It didn't matter for me anyway because the way my incisions were I could barely flush the toilet without assistance so I had to build back my strength anyway as my muscles healed from the incisions.
 
 Lindsey

coltsfan715 · May 18, 2009