How does it feel?!

summer732

New member
Hey Alyssa!

Of course it's scary, any surgery is scary! I was in your boat as well, really not able to do anything. It came to the point that I was on oxygen 24/7, could not get up two steps, and basically was just sleeping all day to conserve energy. It was a very scary time in life and I felt that I was living in this gray area. I wasn't dead, yet I didn't feel alive. The most awful part that I remember was the independence that I lost. I had to leave college and move out of state (from Jersey to New Orleans) for my transplant. The Northeast was just way too congested and I was running out of time quickly!

The testing isn't too bad, although I was not a fan of the heart cath. After the transplant, for me, was amazing. I was very on top of my pain management (the secret is to make sure those pain meds are to you on time, even if you are feeling better...don't ever "chase" your pain). I woke up feeling amazing, had a slight set back with bronchitis and acute rejection, but once those were resolved things just went up hill. I was out of the hospital in 9 days, off of pain meds in 1 month, and i would say 'fully recovered' after about 9 months to a year.

I've actually been reflecting a lot on my transplant experience. I'm 4 years post coming up in the middle of November. My life is simply amazing. I could never do half of the things that I have done if I didn't go through with the surgery. I am humbled everyday by this journey and thankful I was given this time.

Today, I am working full time, living on my own, working out full time, and of course have time left over to socialize. I don't stop to think about climbing up a flight of stairs, or how long I'll have to be standing someplace or if I will be tired. I had my annual appointment the other day and my pfts are the best they have ever been (knock on wood)!

Don't get me wrong, there have been bumps along the way but you work through them and get used to a different set of 'problems'. But they are problems you can work through. You have to become more vigilant than ever about hand washing, and avoiding people with colds, and take extra special care of yourself! But it is so worth it.

Sometimes when things are going well, it's easy to forget how fragile post transplant life is. So I constantly remind myself to take care of myself just in case the other shoe drops. And every now and then, I stop out of no where just to take a deep breath to remind myself just how special it is and what a privilege it is to be able to do that!!
 

summer732

New member
Hey Alyssa!

Of course it's scary, any surgery is scary! I was in your boat as well, really not able to do anything. It came to the point that I was on oxygen 24/7, could not get up two steps, and basically was just sleeping all day to conserve energy. It was a very scary time in life and I felt that I was living in this gray area. I wasn't dead, yet I didn't feel alive. The most awful part that I remember was the independence that I lost. I had to leave college and move out of state (from Jersey to New Orleans) for my transplant. The Northeast was just way too congested and I was running out of time quickly!

The testing isn't too bad, although I was not a fan of the heart cath. After the transplant, for me, was amazing. I was very on top of my pain management (the secret is to make sure those pain meds are to you on time, even if you are feeling better...don't ever "chase" your pain). I woke up feeling amazing, had a slight set back with bronchitis and acute rejection, but once those were resolved things just went up hill. I was out of the hospital in 9 days, off of pain meds in 1 month, and i would say 'fully recovered' after about 9 months to a year.

I've actually been reflecting a lot on my transplant experience. I'm 4 years post coming up in the middle of November. My life is simply amazing. I could never do half of the things that I have done if I didn't go through with the surgery. I am humbled everyday by this journey and thankful I was given this time.

Today, I am working full time, living on my own, working out full time, and of course have time left over to socialize. I don't stop to think about climbing up a flight of stairs, or how long I'll have to be standing someplace or if I will be tired. I had my annual appointment the other day and my pfts are the best they have ever been (knock on wood)!

Don't get me wrong, there have been bumps along the way but you work through them and get used to a different set of 'problems'. But they are problems you can work through. You have to become more vigilant than ever about hand washing, and avoiding people with colds, and take extra special care of yourself! But it is so worth it.

Sometimes when things are going well, it's easy to forget how fragile post transplant life is. So I constantly remind myself to take care of myself just in case the other shoe drops. And every now and then, I stop out of no where just to take a deep breath to remind myself just how special it is and what a privilege it is to be able to do that!!
 

summer732

New member
Hey Alyssa!

Of course it's scary, any surgery is scary! I was in your boat as well, really not able to do anything. It came to the point that I was on oxygen 24/7, could not get up two steps, and basically was just sleeping all day to conserve energy. It was a very scary time in life and I felt that I was living in this gray area. I wasn't dead, yet I didn't feel alive. The most awful part that I remember was the independence that I lost. I had to leave college and move out of state (from Jersey to New Orleans) for my transplant. The Northeast was just way too congested and I was running out of time quickly!

The testing isn't too bad, although I was not a fan of the heart cath. After the transplant, for me, was amazing. I was very on top of my pain management (the secret is to make sure those pain meds are to you on time, even if you are feeling better...don't ever "chase" your pain). I woke up feeling amazing, had a slight set back with bronchitis and acute rejection, but once those were resolved things just went up hill. I was out of the hospital in 9 days, off of pain meds in 1 month, and i would say 'fully recovered' after about 9 months to a year.

I've actually been reflecting a lot on my transplant experience. I'm 4 years post coming up in the middle of November. My life is simply amazing. I could never do half of the things that I have done if I didn't go through with the surgery. I am humbled everyday by this journey and thankful I was given this time.

Today, I am working full time, living on my own, working out full time, and of course have time left over to socialize. I don't stop to think about climbing up a flight of stairs, or how long I'll have to be standing someplace or if I will be tired. I had my annual appointment the other day and my pfts are the best they have ever been (knock on wood)!

Don't get me wrong, there have been bumps along the way but you work through them and get used to a different set of 'problems'. But they are problems you can work through. You have to become more vigilant than ever about hand washing, and avoiding people with colds, and take extra special care of yourself! But it is so worth it.

Sometimes when things are going well, it's easy to forget how fragile post transplant life is. So I constantly remind myself to take care of myself just in case the other shoe drops. And every now and then, I stop out of no where just to take a deep breath to remind myself just how special it is and what a privilege it is to be able to do that!!
 

summer732

New member
Hey Alyssa!

Of course it's scary, any surgery is scary! I was in your boat as well, really not able to do anything. It came to the point that I was on oxygen 24/7, could not get up two steps, and basically was just sleeping all day to conserve energy. It was a very scary time in life and I felt that I was living in this gray area. I wasn't dead, yet I didn't feel alive. The most awful part that I remember was the independence that I lost. I had to leave college and move out of state (from Jersey to New Orleans) for my transplant. The Northeast was just way too congested and I was running out of time quickly!

The testing isn't too bad, although I was not a fan of the heart cath. After the transplant, for me, was amazing. I was very on top of my pain management (the secret is to make sure those pain meds are to you on time, even if you are feeling better...don't ever "chase" your pain). I woke up feeling amazing, had a slight set back with bronchitis and acute rejection, but once those were resolved things just went up hill. I was out of the hospital in 9 days, off of pain meds in 1 month, and i would say 'fully recovered' after about 9 months to a year.

I've actually been reflecting a lot on my transplant experience. I'm 4 years post coming up in the middle of November. My life is simply amazing. I could never do half of the things that I have done if I didn't go through with the surgery. I am humbled everyday by this journey and thankful I was given this time.

Today, I am working full time, living on my own, working out full time, and of course have time left over to socialize. I don't stop to think about climbing up a flight of stairs, or how long I'll have to be standing someplace or if I will be tired. I had my annual appointment the other day and my pfts are the best they have ever been (knock on wood)!

Don't get me wrong, there have been bumps along the way but you work through them and get used to a different set of 'problems'. But they are problems you can work through. You have to become more vigilant than ever about hand washing, and avoiding people with colds, and take extra special care of yourself! But it is so worth it.

Sometimes when things are going well, it's easy to forget how fragile post transplant life is. So I constantly remind myself to take care of myself just in case the other shoe drops. And every now and then, I stop out of no where just to take a deep breath to remind myself just how special it is and what a privilege it is to be able to do that!!
 

summer732

New member
Hey Alyssa!
<br />
<br />Of course it's scary, any surgery is scary! I was in your boat as well, really not able to do anything. It came to the point that I was on oxygen 24/7, could not get up two steps, and basically was just sleeping all day to conserve energy. It was a very scary time in life and I felt that I was living in this gray area. I wasn't dead, yet I didn't feel alive. The most awful part that I remember was the independence that I lost. I had to leave college and move out of state (from Jersey to New Orleans) for my transplant. The Northeast was just way too congested and I was running out of time quickly!
<br />
<br />The testing isn't too bad, although I was not a fan of the heart cath. After the transplant, for me, was amazing. I was very on top of my pain management (the secret is to make sure those pain meds are to you on time, even if you are feeling better...don't ever "chase" your pain). I woke up feeling amazing, had a slight set back with bronchitis and acute rejection, but once those were resolved things just went up hill. I was out of the hospital in 9 days, off of pain meds in 1 month, and i would say 'fully recovered' after about 9 months to a year.
<br />
<br />I've actually been reflecting a lot on my transplant experience. I'm 4 years post coming up in the middle of November. My life is simply amazing. I could never do half of the things that I have done if I didn't go through with the surgery. I am humbled everyday by this journey and thankful I was given this time.
<br />
<br />Today, I am working full time, living on my own, working out full time, and of course have time left over to socialize. I don't stop to think about climbing up a flight of stairs, or how long I'll have to be standing someplace or if I will be tired. I had my annual appointment the other day and my pfts are the best they have ever been (knock on wood)!
<br />
<br />Don't get me wrong, there have been bumps along the way but you work through them and get used to a different set of 'problems'. But they are problems you can work through. You have to become more vigilant than ever about hand washing, and avoiding people with colds, and take extra special care of yourself! But it is so worth it.
<br />
<br />Sometimes when things are going well, it's easy to forget how fragile post transplant life is. So I constantly remind myself to take care of myself just in case the other shoe drops. And every now and then, I stop out of no where just to take a deep breath to remind myself just how special it is and what a privilege it is to be able to do that!!
 

Mamasieta23

New member
hey girl- maybe we can relate bettter? im 17..=] uhmm do it ...its not that bad ..its scary but like tthey put u too sleep nd when u wake up u do haver a tube down u but i didnt rele kno although the ppl can be bitchy bc i was super thirsty nd they didnt care, lmfao anyway, ever since I LOVE MY LIFE-- no joke.. ( ive also had like 12 boyfriends since , nd its only been like 2 yrs heheheh )
 

Mamasieta23

New member
hey girl- maybe we can relate bettter? im 17..=] uhmm do it ...its not that bad ..its scary but like tthey put u too sleep nd when u wake up u do haver a tube down u but i didnt rele kno although the ppl can be bitchy bc i was super thirsty nd they didnt care, lmfao anyway, ever since I LOVE MY LIFE-- no joke.. ( ive also had like 12 boyfriends since , nd its only been like 2 yrs heheheh )
 

Mamasieta23

New member
hey girl- maybe we can relate bettter? im 17..=] uhmm do it ...its not that bad ..its scary but like tthey put u too sleep nd when u wake up u do haver a tube down u but i didnt rele kno although the ppl can be bitchy bc i was super thirsty nd they didnt care, lmfao anyway, ever since I LOVE MY LIFE-- no joke.. ( ive also had like 12 boyfriends since , nd its only been like 2 yrs heheheh )
 

Mamasieta23

New member
hey girl- maybe we can relate bettter? im 17..=] uhmm do it ...its not that bad ..its scary but like tthey put u too sleep nd when u wake up u do haver a tube down u but i didnt rele kno although the ppl can be bitchy bc i was super thirsty nd they didnt care, lmfao anyway, ever since I LOVE MY LIFE-- no joke.. ( ive also had like 12 boyfriends since , nd its only been like 2 yrs heheheh )
 

Mamasieta23

New member
hey girl- maybe we can relate bettter? im 17..=] uhmm do it ...its not that bad ..its scary but like tthey put u too sleep nd when u wake up u do haver a tube down u but i didnt rele kno although the ppl can be bitchy bc i was super thirsty nd they didnt care, lmfao anyway, ever since I LOVE MY LIFE-- no joke.. ( ive also had like 12 boyfriends since , nd its only been like 2 yrs heheheh )
 

coltsfan715

New member
Sorry you are going through this but at the same time I am glad you have the opportunity to pursue transplant since you want it.

As for whether or not it is all scary. NO - but alot of it is. You are entering an area that you are not familiar with and for the first time in a long time the docs are going to know about what you are dealing with than you will.

All I can say is keep listening to your body when you think something is wrong then say so. Listen to the transplant team - even though you may not understand it this is something that they know much better than you - at least right now.

It can be scary the newness of everything but you can handle it. As I always told my mom before I would be great if I had just been given a could set of lungs. If I could just start with a good set I would do fantastic. I got a new set and have done everything in my power to take care of it and yes it has been a little scary but honestly there are more OH MY GOD this is AWESOME! moments than scary ones.

As for what it is like to breathe normally. All I can say is it is ten thousand times better than you can even imagine. Even when I was "healthy" I didn't breathe this easily and this clearly and it feels incredible.

GOOD LUCK!

Linds
 

coltsfan715

New member
Sorry you are going through this but at the same time I am glad you have the opportunity to pursue transplant since you want it.

As for whether or not it is all scary. NO - but alot of it is. You are entering an area that you are not familiar with and for the first time in a long time the docs are going to know about what you are dealing with than you will.

All I can say is keep listening to your body when you think something is wrong then say so. Listen to the transplant team - even though you may not understand it this is something that they know much better than you - at least right now.

It can be scary the newness of everything but you can handle it. As I always told my mom before I would be great if I had just been given a could set of lungs. If I could just start with a good set I would do fantastic. I got a new set and have done everything in my power to take care of it and yes it has been a little scary but honestly there are more OH MY GOD this is AWESOME! moments than scary ones.

As for what it is like to breathe normally. All I can say is it is ten thousand times better than you can even imagine. Even when I was "healthy" I didn't breathe this easily and this clearly and it feels incredible.

GOOD LUCK!

Linds
 

coltsfan715

New member
Sorry you are going through this but at the same time I am glad you have the opportunity to pursue transplant since you want it.

As for whether or not it is all scary. NO - but alot of it is. You are entering an area that you are not familiar with and for the first time in a long time the docs are going to know about what you are dealing with than you will.

All I can say is keep listening to your body when you think something is wrong then say so. Listen to the transplant team - even though you may not understand it this is something that they know much better than you - at least right now.

It can be scary the newness of everything but you can handle it. As I always told my mom before I would be great if I had just been given a could set of lungs. If I could just start with a good set I would do fantastic. I got a new set and have done everything in my power to take care of it and yes it has been a little scary but honestly there are more OH MY GOD this is AWESOME! moments than scary ones.

As for what it is like to breathe normally. All I can say is it is ten thousand times better than you can even imagine. Even when I was "healthy" I didn't breathe this easily and this clearly and it feels incredible.

GOOD LUCK!

Linds
 

coltsfan715

New member
Sorry you are going through this but at the same time I am glad you have the opportunity to pursue transplant since you want it.

As for whether or not it is all scary. NO - but alot of it is. You are entering an area that you are not familiar with and for the first time in a long time the docs are going to know about what you are dealing with than you will.

All I can say is keep listening to your body when you think something is wrong then say so. Listen to the transplant team - even though you may not understand it this is something that they know much better than you - at least right now.

It can be scary the newness of everything but you can handle it. As I always told my mom before I would be great if I had just been given a could set of lungs. If I could just start with a good set I would do fantastic. I got a new set and have done everything in my power to take care of it and yes it has been a little scary but honestly there are more OH MY GOD this is AWESOME! moments than scary ones.

As for what it is like to breathe normally. All I can say is it is ten thousand times better than you can even imagine. Even when I was "healthy" I didn't breathe this easily and this clearly and it feels incredible.

GOOD LUCK!

Linds
 

coltsfan715

New member
Sorry you are going through this but at the same time I am glad you have the opportunity to pursue transplant since you want it.
<br />
<br />As for whether or not it is all scary. NO - but alot of it is. You are entering an area that you are not familiar with and for the first time in a long time the docs are going to know about what you are dealing with than you will.
<br />
<br />All I can say is keep listening to your body when you think something is wrong then say so. Listen to the transplant team - even though you may not understand it this is something that they know much better than you - at least right now.
<br />
<br />It can be scary the newness of everything but you can handle it. As I always told my mom before I would be great if I had just been given a could set of lungs. If I could just start with a good set I would do fantastic. I got a new set and have done everything in my power to take care of it and yes it has been a little scary but honestly there are more OH MY GOD this is AWESOME! moments than scary ones.
<br />
<br />As for what it is like to breathe normally. All I can say is it is ten thousand times better than you can even imagine. Even when I was "healthy" I didn't breathe this easily and this clearly and it feels incredible.
<br />
<br />GOOD LUCK!
<br />
<br />Linds
 
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