Hey there my name is Charlie 27/m/MA and I just got out of the hospital about 2 weeks ago. I was in there since the beginning of 2008. Not really the way I wanted to start of the year. I went in for a clean out and got sick from the hospital. So now I'm feeling better, I got a g-tube now(stomache tube) and I'm trying to put some weight on. I've now decided on getting a lung transplant. So I'm on the list but it will probably be about a year until I can get one, mabe longer. I first have to get healthy enough for the surgury then we'll go from there. So I've been told what to expect from doctor's but I would like to hear from other CF people. Weather you have had a transplant or if your on the list and going through what I'm going through. Any and all replies would be great. I have good days and bad days just like everyone else, so all your help would be gladly appreciated. Thank you very much. Peace & Love Charlie
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- Thread starter CBJ
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Hey there my name is Charlie 27/m/MA and I just got out of the hospital about 2 weeks ago. I was in there since the beginning of 2008. Not really the way I wanted to start of the year. I went in for a clean out and got sick from the hospital. So now I'm feeling better, I got a g-tube now(stomache tube) and I'm trying to put some weight on. I've now decided on getting a lung transplant. So I'm on the list but it will probably be about a year until I can get one, mabe longer. I first have to get healthy enough for the surgury then we'll go from there. So I've been told what to expect from doctor's but I would like to hear from other CF people. Weather you have had a transplant or if your on the list and going through what I'm going through. Any and all replies would be great. I have good days and bad days just like everyone else, so all your help would be gladly appreciated. Thank you very much. Peace & Love Charlie
Hey there my name is Charlie 27/m/MA and I just got out of the hospital about 2 weeks ago. I was in there since the beginning of 2008. Not really the way I wanted to start of the year. I went in for a clean out and got sick from the hospital. So now I'm feeling better, I got a g-tube now(stomache tube) and I'm trying to put some weight on. I've now decided on getting a lung transplant. So I'm on the list but it will probably be about a year until I can get one, mabe longer. I first have to get healthy enough for the surgury then we'll go from there. So I've been told what to expect from doctor's but I would like to hear from other CF people. Weather you have had a transplant or if your on the list and going through what I'm going through. Any and all replies would be great. I have good days and bad days just like everyone else, so all your help would be gladly appreciated. Thank you very much. Peace & Love Charlie
Hey there my name is Charlie 27/m/MA and I just got out of the hospital about 2 weeks ago. I was in there since the beginning of 2008. Not really the way I wanted to start of the year. I went in for a clean out and got sick from the hospital. So now I'm feeling better, I got a g-tube now(stomache tube) and I'm trying to put some weight on. I've now decided on getting a lung transplant. So I'm on the list but it will probably be about a year until I can get one, mabe longer. I first have to get healthy enough for the surgury then we'll go from there. So I've been told what to expect from doctor's but I would like to hear from other CF people. Weather you have had a transplant or if your on the list and going through what I'm going through. Any and all replies would be great. I have good days and bad days just like everyone else, so all your help would be gladly appreciated. Thank you very much. Peace & Love Charlie
Hey there my name is Charlie 27/m/MA and I just got out of the hospital about 2 weeks ago. I was in there since the beginning of 2008. Not really the way I wanted to start of the year. I went in for a clean out and got sick from the hospital. So now I'm feeling better, I got a g-tube now(stomache tube) and I'm trying to put some weight on. I've now decided on getting a lung transplant. So I'm on the list but it will probably be about a year until I can get one, mabe longer. I first have to get healthy enough for the surgury then we'll go from there. So I've been told what to expect from doctor's but I would like to hear from other CF people. Weather you have had a transplant or if your on the list and going through what I'm going through. Any and all replies would be great. I have good days and bad days just like everyone else, so all your help would be gladly appreciated. Thank you very much. Peace & Love Charlie
T
theDUDE
Guest
i am not sure what your question is but i will do my best. i am 18,m, waiting to get listed. If i were you i would look forward to getting it over with, its kind of like getting a shot, you hate it but you want the nurse to stick in u and get it over with. thats how i think about it. Just tell yourself you can do it, i know i can, and it sounds like you can, getting a transplant with help get on with your life. good luck
T
theDUDE
Guest
i am not sure what your question is but i will do my best. i am 18,m, waiting to get listed. If i were you i would look forward to getting it over with, its kind of like getting a shot, you hate it but you want the nurse to stick in u and get it over with. thats how i think about it. Just tell yourself you can do it, i know i can, and it sounds like you can, getting a transplant with help get on with your life. good luck
T
theDUDE
Guest
i am not sure what your question is but i will do my best. i am 18,m, waiting to get listed. If i were you i would look forward to getting it over with, its kind of like getting a shot, you hate it but you want the nurse to stick in u and get it over with. thats how i think about it. Just tell yourself you can do it, i know i can, and it sounds like you can, getting a transplant with help get on with your life. good luck
T
theDUDE
Guest
i am not sure what your question is but i will do my best. i am 18,m, waiting to get listed. If i were you i would look forward to getting it over with, its kind of like getting a shot, you hate it but you want the nurse to stick in u and get it over with. thats how i think about it. Just tell yourself you can do it, i know i can, and it sounds like you can, getting a transplant with help get on with your life. good luck
T
theDUDE
Guest
i am not sure what your question is but i will do my best. i am 18,m, waiting to get listed. If i were you i would look forward to getting it over with, its kind of like getting a shot, you hate it but you want the nurse to stick in u and get it over with. thats how i think about it. Just tell yourself you can do it, i know i can, and it sounds like you can, getting a transplant with help get on with your life. good luck
coltsfan715
New member
Hey Charlie,
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
coltsfan715
New member
Hey Charlie,
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
coltsfan715
New member
Hey Charlie,
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
coltsfan715
New member
Hey Charlie,
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
Glad to see you on here.
I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
Take Care and Best of Luck to you .
If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
Love Linds
coltsfan715
New member
Hey Charlie,
<br />
<br />Glad to see you on here.
<br />
<br />I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
<br />
<br />I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
<br />
<br />I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
<br />
<br />I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
<br />
<br />Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
<br />
<br />I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
<br />
<br />At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
<br />
<br />The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
<br />
<br />After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
<br />
<br />I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
<br />
<br />Take Care and Best of Luck to you .
<br />
<br />If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
<br />
<br />Love Linds
<br />
<br />
<br />Glad to see you on here.
<br />
<br />I was listed last March - actually about a year ago this week. I was transplanted in May of last year. I waited about 6 weeks which by most standards is VERY short wait but I was in need so it came at a good time for me.
<br />
<br />I kind of wrestled with the idea of it for a year whether or not I wanted to pursue it but once I did make the decision I was full steam ahead - well maybe a quarter steam ahead at the time .. now it is full steam.
<br />
<br />I think the few things that I had to remember in preparing for transplant was I know what I can handle and no one else. People always thought they were helping the situation when I would get down or upset over something and they would say .. transplant is harder -- I just wanted to say NO ***** - can I not just have a crappy day.
<br />
<br />I learned quick to just ignore those people and I used their disbelief in my ability to get through this process as fuel for the fire I guess.
<br />
<br />Also it IS HARD work. You have to be dedicated and ready for a different kind of life. It is scary at first because it is new and not something you are really used too but as time passes you will adjust. I have not met a single person - no matter how "ready" they were pre transplant that didn't have some serious fear issues before they left the hospital or in the immediate months post surgery. You are getting adjusted to a new way of life and you are having to be aware of things you may not have thought of before.
<br />
<br />I personally had a TON of pain - but know some that had little to no pain. The vent for me was not that bad - or as bad as I thought it would be. More annoying than anything - because of the inability to communicate.
<br />
<br />At my center they had me up and moving within about 12 hours of being off the vent. I was off the vent within 3 hours of surgery - so within the first 18 hours I was up and walking - standing whatever - even if only a few steps I was moving.
<br />
<br />The chest tubes - not fun - probably the most pain in the ass part of the whole thing at first. From there expect side effects from the medications. They suck YES - but they do subside with time. It just takes your body some time to get adjusted to the new meds in your system.
<br />
<br />After care - once you are out of the hospital post surgery - you may go back but I am talking the first release post transplant. Be AWARE of what is going on with your body. Listen to the docs try to do as the recommend especially at first. The first few months are the hardest for most everyone. Don't sit on any type of sick feelings. ALWAYS call if you think something may be wrong or if you are not feeling right - meaning you have a sore throat, are coughing a little more, may be have a fever, ear aches, severe headaches anything .... CALL the docs. As my docs told me after my surgery before I went home call - we would rather it be nothing then for you to NOT call and it be something. That and if you do get sick it can take you down quick and you don't want to get to THAT point.
<br />
<br />I can think of SO much more that I could say BUT at the same time - I don't want to write all night.
<br />
<br />Take Care and Best of Luck to you .
<br />
<br />If you ever want to email me just to chat feel free - my email address is Divawithwings@gmail.com
<br />
<br />Love Linds
<br />
Hi Charlie, I don't have CF but my two girls do. My oldest, Anna, had a double lung tx in July 2007. She's the one on the right in my picture just below. We, just her and I, relocated to CA for the transplant waiting list. She was listed for just under 6 months. I think I can say with much confidence, that waiting is the hardest. There were times when she was sure that they were never going to call her. And as happy as we were when others from transplant support group got their calls we were a little sad because it wasn't her time yet. She felt that there should be a little bit of a wait, if you're not in immediate need, just so you can get a chance to wrap your head around the whole idea that you are actually on that list. She didn't want to get her call immediately after being listed. Which of course that didn't happen. As time went on though, she was like... "OK, they can call me now!" She tried her best to keep her weight on and gain, she started horseback riding, English style because it works your leg muscles. You need to strengthen your legs as best you can before transplant. When they finally did call her she was so happy. I won't say much more in case she see's your post and decides to tell you herself.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Hi Charlie, I don't have CF but my two girls do. My oldest, Anna, had a double lung tx in July 2007. She's the one on the right in my picture just below. We, just her and I, relocated to CA for the transplant waiting list. She was listed for just under 6 months. I think I can say with much confidence, that waiting is the hardest. There were times when she was sure that they were never going to call her. And as happy as we were when others from transplant support group got their calls we were a little sad because it wasn't her time yet. She felt that there should be a little bit of a wait, if you're not in immediate need, just so you can get a chance to wrap your head around the whole idea that you are actually on that list. She didn't want to get her call immediately after being listed. Which of course that didn't happen. As time went on though, she was like... "OK, they can call me now!" She tried her best to keep her weight on and gain, she started horseback riding, English style because it works your leg muscles. You need to strengthen your legs as best you can before transplant. When they finally did call her she was so happy. I won't say much more in case she see's your post and decides to tell you herself.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Hi Charlie, I don't have CF but my two girls do. My oldest, Anna, had a double lung tx in July 2007. She's the one on the right in my picture just below. We, just her and I, relocated to CA for the transplant waiting list. She was listed for just under 6 months. I think I can say with much confidence, that waiting is the hardest. There were times when she was sure that they were never going to call her. And as happy as we were when others from transplant support group got their calls we were a little sad because it wasn't her time yet. She felt that there should be a little bit of a wait, if you're not in immediate need, just so you can get a chance to wrap your head around the whole idea that you are actually on that list. She didn't want to get her call immediately after being listed. Which of course that didn't happen. As time went on though, she was like... "OK, they can call me now!" She tried her best to keep her weight on and gain, she started horseback riding, English style because it works your leg muscles. You need to strengthen your legs as best you can before transplant. When they finally did call her she was so happy. I won't say much more in case she see's your post and decides to tell you herself.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Hi Charlie, I don't have CF but my two girls do. My oldest, Anna, had a double lung tx in July 2007. She's the one on the right in my picture just below. We, just her and I, relocated to CA for the transplant waiting list. She was listed for just under 6 months. I think I can say with much confidence, that waiting is the hardest. There were times when she was sure that they were never going to call her. And as happy as we were when others from transplant support group got their calls we were a little sad because it wasn't her time yet. She felt that there should be a little bit of a wait, if you're not in immediate need, just so you can get a chance to wrap your head around the whole idea that you are actually on that list. She didn't want to get her call immediately after being listed. Which of course that didn't happen. As time went on though, she was like... "OK, they can call me now!" She tried her best to keep her weight on and gain, she started horseback riding, English style because it works your leg muscles. You need to strengthen your legs as best you can before transplant. When they finally did call her she was so happy. I won't say much more in case she see's your post and decides to tell you herself.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
Hi Charlie, I don't have CF but my two girls do. My oldest, Anna, had a double lung tx in July 2007. She's the one on the right in my picture just below. We, just her and I, relocated to CA for the transplant waiting list. She was listed for just under 6 months. I think I can say with much confidence, that waiting is the hardest. There were times when she was sure that they were never going to call her. And as happy as we were when others from transplant support group got their calls we were a little sad because it wasn't her time yet. She felt that there should be a little bit of a wait, if you're not in immediate need, just so you can get a chance to wrap your head around the whole idea that you are actually on that list. She didn't want to get her call immediately after being listed. Which of course that didn't happen. As time went on though, she was like... "OK, they can call me now!" She tried her best to keep her weight on and gain, she started horseback riding, English style because it works your leg muscles. You need to strengthen your legs as best you can before transplant. When they finally did call her she was so happy. I won't say much more in case she see's your post and decides to tell you herself.
<br />
<br />Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
<br />
<br />
<br />
<br />Good luck Charlie and I hope your wait is not a long one. Be sure to keep us posted on how you are doing and whatever else is going on. I know that I would not have gotten through all the wait without everyone here. Everyone is just wonderful.
<br />
<br />