The Transplant Decision ... (to be or not to be?)

[Grendel]

Hey Everyone,

So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ...

"Is it all worth it?"

I am 37 years of age and consider myself as having had a good life full of difficulties and tragedies. My parents passed when I was 11, and I subsequently lost my grandparents within a period of two years after that. I share this to convey that I very early found the concept of death to be very real, and I lived my life accordingly, never leaving a stone unturned, seeking adventures (travel, skydiving, surfing, you name it -and I've done it) and fighting the good fight (like all CF Warriors). Over the past 8 years my health started to go really south, which was initiated with having caught 8 parasites in a foreign country, and not being diagnosed with the bugs till over a year after catching them, which really advanced my CF issues. All that began an incredibly difficult path to where I am now, with pulmonary hypertension, elevated CO2 levels (giving me migraines and a v-tach last year), and looking at the prospects of a tx.

I am divorced (CF broke her already fractured spirit), living hand to mouth in a darkening economy, I have no immediate family to speak of, though I have become somewhat close with cousins, and have collected some amazing friends along my journey in the US and around the world. Things are tough, but I've lived a beautiful life.

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now), as a single man getting older, and the prospects of a HUGE burden on my friends and cousins, I am wondering is all the effort that goes into a tx worth it? Is it worth it to the tx-recipient? And furthermore, do the care-providers (friends/family/etc.) really get that much out of sacrificing so much? I wonder if the tx even goes well (read some bad and good stories), can I live up to the responsibility of living a life that someone else donated and for which so many sacrificed for me 'to be'? I also wonder 'not to be': if it wouldn't simply be easier to let the ship run its natural course and run-a-ground by not getting a transplant, thereby ending all the uncertainty, difficulties, loneliness, and responsibilities?

Thoughts?

Thanks,
Grendel

 

[Grendel]

Hey Everyone,

So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ...

"Is it all worth it?"

I am 37 years of age and consider myself as having had a good life full of difficulties and tragedies. My parents passed when I was 11, and I subsequently lost my grandparents within a period of two years after that. I share this to convey that I very early found the concept of death to be very real, and I lived my life accordingly, never leaving a stone unturned, seeking adventures (travel, skydiving, surfing, you name it -and I've done it) and fighting the good fight (like all CF Warriors). Over the past 8 years my health started to go really south, which was initiated with having caught 8 parasites in a foreign country, and not being diagnosed with the bugs till over a year after catching them, which really advanced my CF issues. All that began an incredibly difficult path to where I am now, with pulmonary hypertension, elevated CO2 levels (giving me migraines and a v-tach last year), and looking at the prospects of a tx.

I am divorced (CF broke her already fractured spirit), living hand to mouth in a darkening economy, I have no immediate family to speak of, though I have become somewhat close with cousins, and have collected some amazing friends along my journey in the US and around the world. Things are tough, but I've lived a beautiful life.

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now), as a single man getting older, and the prospects of a HUGE burden on my friends and cousins, I am wondering is all the effort that goes into a tx worth it? Is it worth it to the tx-recipient? And furthermore, do the care-providers (friends/family/etc.) really get that much out of sacrificing so much? I wonder if the tx even goes well (read some bad and good stories), can I live up to the responsibility of living a life that someone else donated and for which so many sacrificed for me 'to be'? I also wonder 'not to be': if it wouldn't simply be easier to let the ship run its natural course and run-a-ground by not getting a transplant, thereby ending all the uncertainty, difficulties, loneliness, and responsibilities?

Thoughts?

Thanks,
Grendel

 

[Grendel]

Hey Everyone,

So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ...

"Is it all worth it?"

I am 37 years of age and consider myself as having had a good life full of difficulties and tragedies. My parents passed when I was 11, and I subsequently lost my grandparents within a period of two years after that. I share this to convey that I very early found the concept of death to be very real, and I lived my life accordingly, never leaving a stone unturned, seeking adventures (travel, skydiving, surfing, you name it -and I've done it) and fighting the good fight (like all CF Warriors). Over the past 8 years my health started to go really south, which was initiated with having caught 8 parasites in a foreign country, and not being diagnosed with the bugs till over a year after catching them, which really advanced my CF issues. All that began an incredibly difficult path to where I am now, with pulmonary hypertension, elevated CO2 levels (giving me migraines and a v-tach last year), and looking at the prospects of a tx.

I am divorced (CF broke her already fractured spirit), living hand to mouth in a darkening economy, I have no immediate family to speak of, though I have become somewhat close with cousins, and have collected some amazing friends along my journey in the US and around the world. Things are tough, but I've lived a beautiful life.

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now), as a single man getting older, and the prospects of a HUGE burden on my friends and cousins, I am wondering is all the effort that goes into a tx worth it? Is it worth it to the tx-recipient? And furthermore, do the care-providers (friends/family/etc.) really get that much out of sacrificing so much? I wonder if the tx even goes well (read some bad and good stories), can I live up to the responsibility of living a life that someone else donated and for which so many sacrificed for me 'to be'? I also wonder 'not to be': if it wouldn't simply be easier to let the ship run its natural course and run-a-ground by not getting a transplant, thereby ending all the uncertainty, difficulties, loneliness, and responsibilities?

Thoughts?

Thanks,
Grendel

 

[Grendel]

Hey Everyone,

So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ...

"Is it all worth it?"

I am 37 years of age and consider myself as having had a good life full of difficulties and tragedies. My parents passed when I was 11, and I subsequently lost my grandparents within a period of two years after that. I share this to convey that I very early found the concept of death to be very real, and I lived my life accordingly, never leaving a stone unturned, seeking adventures (travel, skydiving, surfing, you name it -and I've done it) and fighting the good fight (like all CF Warriors). Over the past 8 years my health started to go really south, which was initiated with having caught 8 parasites in a foreign country, and not being diagnosed with the bugs till over a year after catching them, which really advanced my CF issues. All that began an incredibly difficult path to where I am now, with pulmonary hypertension, elevated CO2 levels (giving me migraines and a v-tach last year), and looking at the prospects of a tx.

I am divorced (CF broke her already fractured spirit), living hand to mouth in a darkening economy, I have no immediate family to speak of, though I have become somewhat close with cousins, and have collected some amazing friends along my journey in the US and around the world. Things are tough, but I've lived a beautiful life.

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now), as a single man getting older, and the prospects of a HUGE burden on my friends and cousins, I am wondering is all the effort that goes into a tx worth it? Is it worth it to the tx-recipient? And furthermore, do the care-providers (friends/family/etc.) really get that much out of sacrificing so much? I wonder if the tx even goes well (read some bad and good stories), can I live up to the responsibility of living a life that someone else donated and for which so many sacrificed for me 'to be'? I also wonder 'not to be': if it wouldn't simply be easier to let the ship run its natural course and run-a-ground by not getting a transplant, thereby ending all the uncertainty, difficulties, loneliness, and responsibilities?

Thoughts?

Thanks,
Grendel

 

[Grendel]

Hey Everyone,
<br />
<br />So I am going to have my first transplant (tx) meeting with a tx team in two weeks, to become better educated on a tx and consider getting listed. I am told that my Lung Allocation Score is about 37-38. Anyway, I keep going over in my head ...
<br />
<br />"Is it all worth it?"
<br />
<br />I am 37 years of age and consider myself as having had a good life full of difficulties and tragedies. My parents passed when I was 11, and I subsequently lost my grandparents within a period of two years after that. I share this to convey that I very early found the concept of death to be very real, and I lived my life accordingly, never leaving a stone unturned, seeking adventures (travel, skydiving, surfing, you name it -and I've done it) and fighting the good fight (like all CF Warriors). Over the past 8 years my health started to go really south, which was initiated with having caught 8 parasites in a foreign country, and not being diagnosed with the bugs till over a year after catching them, which really advanced my CF issues. All that began an incredibly difficult path to where I am now, with pulmonary hypertension, elevated CO2 levels (giving me migraines and a v-tach last year), and looking at the prospects of a tx.
<br />
<br />I am divorced (CF broke her already fractured spirit), living hand to mouth in a darkening economy, I have no immediate family to speak of, though I have become somewhat close with cousins, and have collected some amazing friends along my journey in the US and around the world. Things are tough, but I've lived a beautiful life.
<br />
<br />So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now), as a single man getting older, and the prospects of a HUGE burden on my friends and cousins, I am wondering is all the effort that goes into a tx worth it? Is it worth it to the tx-recipient? And furthermore, do the care-providers (friends/family/etc.) really get that much out of sacrificing so much? I wonder if the tx even goes well (read some bad and good stories), can I live up to the responsibility of living a life that someone else donated and for which so many sacrificed for me 'to be'? I also wonder 'not to be': if it wouldn't simply be easier to let the ship run its natural course and run-a-ground by not getting a transplant, thereby ending all the uncertainty, difficulties, loneliness, and responsibilities?
<br />
<br />Thoughts?
<br />
<br />Thanks,
<br />Grendel

 

[Skye]

I have not had a tx.....so I will just have to speak from a bit of unknowing. I HAVE been through the tx process though and for me choosing NOT to get a tx should the time come has never really been an option for me. I know some people have a hard time deciding.....it wasn't really that way for me. If they had decided to list me right away I would have jumped in the water<img src="i/expressions/face-icon-small-smile.gif" border="0"> It was not time for me though and I am in a healthier state now.

I guess I just see the tx process as being a continued fight against CF. I see it as a final kick in it's gut. I feel like pain management and medical technology has advanced enough to make me comfortable during the process and that the enjoyment of having new lungs would just be awesome. I play the flute and would love to just play with a full set of lungs or run with no fear....cool<img src="i/expressions/face-icon-small-smile.gif" border="0"> I see my life as having purpose and I want to fulfill ALL of my life's purpose even if that means that others will have to share in that journey.

I think it is hard and vulnerable to be in a place of need; but, I have learned over the years that the people around us are so good and many get enjoyment and great fulfillment in helping others in need. What you see as a burden to someone else may give their life great meaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that makes sense. You have to be willing though to let others in and let others help......I think that can actually be a gift to others if you let it be and you are pleasant in the process<img src="i/expressions/face-icon-small-smile.gif" border="0">

Only you know what your limitations are and what your support network is like and no one can make that decision for you. There are many who decide against tx for various reasons and that is understandable. I hope you can find your true heart's desire in this difficult time.

 

[Skye]

I have not had a tx.....so I will just have to speak from a bit of unknowing. I HAVE been through the tx process though and for me choosing NOT to get a tx should the time come has never really been an option for me. I know some people have a hard time deciding.....it wasn't really that way for me. If they had decided to list me right away I would have jumped in the water<img src="i/expressions/face-icon-small-smile.gif" border="0"> It was not time for me though and I am in a healthier state now.

I guess I just see the tx process as being a continued fight against CF. I see it as a final kick in it's gut. I feel like pain management and medical technology has advanced enough to make me comfortable during the process and that the enjoyment of having new lungs would just be awesome. I play the flute and would love to just play with a full set of lungs or run with no fear....cool<img src="i/expressions/face-icon-small-smile.gif" border="0"> I see my life as having purpose and I want to fulfill ALL of my life's purpose even if that means that others will have to share in that journey.

I think it is hard and vulnerable to be in a place of need; but, I have learned over the years that the people around us are so good and many get enjoyment and great fulfillment in helping others in need. What you see as a burden to someone else may give their life great meaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that makes sense. You have to be willing though to let others in and let others help......I think that can actually be a gift to others if you let it be and you are pleasant in the process<img src="i/expressions/face-icon-small-smile.gif" border="0">

Only you know what your limitations are and what your support network is like and no one can make that decision for you. There are many who decide against tx for various reasons and that is understandable. I hope you can find your true heart's desire in this difficult time.

 

[Skye]

I have not had a tx.....so I will just have to speak from a bit of unknowing. I HAVE been through the tx process though and for me choosing NOT to get a tx should the time come has never really been an option for me. I know some people have a hard time deciding.....it wasn't really that way for me. If they had decided to list me right away I would have jumped in the water<img src="i/expressions/face-icon-small-smile.gif" border="0"> It was not time for me though and I am in a healthier state now.

I guess I just see the tx process as being a continued fight against CF. I see it as a final kick in it's gut. I feel like pain management and medical technology has advanced enough to make me comfortable during the process and that the enjoyment of having new lungs would just be awesome. I play the flute and would love to just play with a full set of lungs or run with no fear....cool<img src="i/expressions/face-icon-small-smile.gif" border="0"> I see my life as having purpose and I want to fulfill ALL of my life's purpose even if that means that others will have to share in that journey.

I think it is hard and vulnerable to be in a place of need; but, I have learned over the years that the people around us are so good and many get enjoyment and great fulfillment in helping others in need. What you see as a burden to someone else may give their life great meaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that makes sense. You have to be willing though to let others in and let others help......I think that can actually be a gift to others if you let it be and you are pleasant in the process<img src="i/expressions/face-icon-small-smile.gif" border="0">

Only you know what your limitations are and what your support network is like and no one can make that decision for you. There are many who decide against tx for various reasons and that is understandable. I hope you can find your true heart's desire in this difficult time.

 

[Skye]

I have not had a tx.....so I will just have to speak from a bit of unknowing. I HAVE been through the tx process though and for me choosing NOT to get a tx should the time come has never really been an option for me. I know some people have a hard time deciding.....it wasn't really that way for me. If they had decided to list me right away I would have jumped in the water<img src="i/expressions/face-icon-small-smile.gif" border="0"> It was not time for me though and I am in a healthier state now.

I guess I just see the tx process as being a continued fight against CF. I see it as a final kick in it's gut. I feel like pain management and medical technology has advanced enough to make me comfortable during the process and that the enjoyment of having new lungs would just be awesome. I play the flute and would love to just play with a full set of lungs or run with no fear....cool<img src="i/expressions/face-icon-small-smile.gif" border="0"> I see my life as having purpose and I want to fulfill ALL of my life's purpose even if that means that others will have to share in that journey.

I think it is hard and vulnerable to be in a place of need; but, I have learned over the years that the people around us are so good and many get enjoyment and great fulfillment in helping others in need. What you see as a burden to someone else may give their life great meaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that makes sense. You have to be willing though to let others in and let others help......I think that can actually be a gift to others if you let it be and you are pleasant in the process<img src="i/expressions/face-icon-small-smile.gif" border="0">

Only you know what your limitations are and what your support network is like and no one can make that decision for you. There are many who decide against tx for various reasons and that is understandable. I hope you can find your true heart's desire in this difficult time.

 

[Skye]

I have not had a tx.....so I will just have to speak from a bit of unknowing. I HAVE been through the tx process though and for me choosing NOT to get a tx should the time come has never really been an option for me. I know some people have a hard time deciding.....it wasn't really that way for me. If they had decided to list me right away I would have jumped in the water<img src="i/expressions/face-icon-small-smile.gif" border="0"> It was not time for me though and I am in a healthier state now.
<br />
<br />I guess I just see the tx process as being a continued fight against CF. I see it as a final kick in it's gut. I feel like pain management and medical technology has advanced enough to make me comfortable during the process and that the enjoyment of having new lungs would just be awesome. I play the flute and would love to just play with a full set of lungs or run with no fear....cool<img src="i/expressions/face-icon-small-smile.gif" border="0"> I see my life as having purpose and I want to fulfill ALL of my life's purpose even if that means that others will have to share in that journey.
<br />
<br />I think it is hard and vulnerable to be in a place of need; but, I have learned over the years that the people around us are so good and many get enjoyment and great fulfillment in helping others in need. What you see as a burden to someone else may give their life great meaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> Hope that makes sense. You have to be willing though to let others in and let others help......I think that can actually be a gift to others if you let it be and you are pleasant in the process<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Only you know what your limitations are and what your support network is like and no one can make that decision for you. There are many who decide against tx for various reasons and that is understandable. I hope you can find your true heart's desire in this difficult time.

 

[coltsfan715]

I will be honest and I may have just interpreted your post but it almost seems like you just want someone to tell you its okay to say no to transplant. If that is the case it is - it is fully an individual decision and you should NOT let the opinions of others sway you in any way be it that you want a transplant or not.

That being said I will say ...

I wondered for a time if transplant was even worth it in general. Would I have more issues than I started with would I be able to do it - would I be strong enough. Just about 2 years prior to my being listed I was opposed to transplant for myself because of a book I had read. THEN as I started to see my health declining and I realized - hey wait there are still some things I want to do - I decided to look into it.

I was still undecided the day I had my first appt at the transplant center. I was very unsure and only knew one thing - that I had A LOT of questions. So over a few months time (prior to my appointment) I wrote down all my questions in a notebook. Then come my appt day I took that notebook with me.

I went through that appointment like I was watching a movie. I felt like they were talking to or about someone else and I was just watching it. Then as I walked out of the office it hit me what was happening and I cried for a few minutes and then I was done. Funny thing though out of all of those questions none of the answers helped me make my decision. I spent 3 weeks thinking and trying to decide if it was worth it. I couldn't make up my mind.

So I asked my mom and she said it is your decision I am not going to tell you what I want you to do because you know what I would want you to do. My dad, Kurt, my best friends and extended family all said the same it is up to you whatever you decide we will stand behind you. Then I went back to Kurt (my fiance) and I asked him seriously what would he do. He told me obviously he didn't want to lose me but if I chose not to he would understand then he said .. "You just have to decide if 6 months would be worth it? Would 6 months be worth the pain, the rehab, all the WORK?" I just sat there and I looked at him and said all I want is one day to REALLY BREATHE. Without taking aerosols, without coughing, without an inhaler, 6 months without a hospital stay would be great so all in all 1 really fantastic day would be worth it.

It was that question that helped make up my mind. "Would 6 months would be worth it?"


Now almost 2 years post I must say it was the hardest but easily the best decision I have ever made in my life. I was not ready to leave this place yet I still had things I wanted to do and I am doing them now.

If you are worried about whether or not you can be productive and fulfill a life that saved yours easily. If you want to - if everything goes right ABSOLUTELY even if everything doesn't go right you can still fulfill things.

I am back in school fulltime hoping to start at a College of Pharmacy next year this time. I am working about 30 hours a week. I volunteer with the local transplant charities and still do things with the transplant center. I go out with friends and try to just enjoy life.

Yes you will take meds afterwards - yes there are alot initially but I will be honest I took more meds pre transplant than I take now. I took about the same pre transplant that I took immediately post transplant. Now it only takes about 2 minutes to take them because they are all pills instead of aerosols and CPT and such.

I am not going to lie and say it is easy because it isn't BUT if you want to do it and you have someone or someoneS say that they will help you then don't doubt them take them up on it because it can be worth it if you are willing to put the work in. YOU have to be dedicated to it though out of everyone because YOU have to live with it for the rest of your life - not your friends and family ... YOU.

I don't know if ANY of that helped at all I know it is a bit long but I wanted you to understand that I was not always pro transplant. Now I still understand that it is not for everyone but it has been amazing for me and I would do it again tomorrow if it was needed.

Good Luck,
Lindsey

 

[coltsfan715]

I will be honest and I may have just interpreted your post but it almost seems like you just want someone to tell you its okay to say no to transplant. If that is the case it is - it is fully an individual decision and you should NOT let the opinions of others sway you in any way be it that you want a transplant or not.

That being said I will say ...

I wondered for a time if transplant was even worth it in general. Would I have more issues than I started with would I be able to do it - would I be strong enough. Just about 2 years prior to my being listed I was opposed to transplant for myself because of a book I had read. THEN as I started to see my health declining and I realized - hey wait there are still some things I want to do - I decided to look into it.

I was still undecided the day I had my first appt at the transplant center. I was very unsure and only knew one thing - that I had A LOT of questions. So over a few months time (prior to my appointment) I wrote down all my questions in a notebook. Then come my appt day I took that notebook with me.

I went through that appointment like I was watching a movie. I felt like they were talking to or about someone else and I was just watching it. Then as I walked out of the office it hit me what was happening and I cried for a few minutes and then I was done. Funny thing though out of all of those questions none of the answers helped me make my decision. I spent 3 weeks thinking and trying to decide if it was worth it. I couldn't make up my mind.

So I asked my mom and she said it is your decision I am not going to tell you what I want you to do because you know what I would want you to do. My dad, Kurt, my best friends and extended family all said the same it is up to you whatever you decide we will stand behind you. Then I went back to Kurt (my fiance) and I asked him seriously what would he do. He told me obviously he didn't want to lose me but if I chose not to he would understand then he said .. "You just have to decide if 6 months would be worth it? Would 6 months be worth the pain, the rehab, all the WORK?" I just sat there and I looked at him and said all I want is one day to REALLY BREATHE. Without taking aerosols, without coughing, without an inhaler, 6 months without a hospital stay would be great so all in all 1 really fantastic day would be worth it.

It was that question that helped make up my mind. "Would 6 months would be worth it?"


Now almost 2 years post I must say it was the hardest but easily the best decision I have ever made in my life. I was not ready to leave this place yet I still had things I wanted to do and I am doing them now.

If you are worried about whether or not you can be productive and fulfill a life that saved yours easily. If you want to - if everything goes right ABSOLUTELY even if everything doesn't go right you can still fulfill things.

I am back in school fulltime hoping to start at a College of Pharmacy next year this time. I am working about 30 hours a week. I volunteer with the local transplant charities and still do things with the transplant center. I go out with friends and try to just enjoy life.

Yes you will take meds afterwards - yes there are alot initially but I will be honest I took more meds pre transplant than I take now. I took about the same pre transplant that I took immediately post transplant. Now it only takes about 2 minutes to take them because they are all pills instead of aerosols and CPT and such.

I am not going to lie and say it is easy because it isn't BUT if you want to do it and you have someone or someoneS say that they will help you then don't doubt them take them up on it because it can be worth it if you are willing to put the work in. YOU have to be dedicated to it though out of everyone because YOU have to live with it for the rest of your life - not your friends and family ... YOU.

I don't know if ANY of that helped at all I know it is a bit long but I wanted you to understand that I was not always pro transplant. Now I still understand that it is not for everyone but it has been amazing for me and I would do it again tomorrow if it was needed.

Good Luck,
Lindsey

 

[coltsfan715]

I will be honest and I may have just interpreted your post but it almost seems like you just want someone to tell you its okay to say no to transplant. If that is the case it is - it is fully an individual decision and you should NOT let the opinions of others sway you in any way be it that you want a transplant or not.

That being said I will say ...

I wondered for a time if transplant was even worth it in general. Would I have more issues than I started with would I be able to do it - would I be strong enough. Just about 2 years prior to my being listed I was opposed to transplant for myself because of a book I had read. THEN as I started to see my health declining and I realized - hey wait there are still some things I want to do - I decided to look into it.

I was still undecided the day I had my first appt at the transplant center. I was very unsure and only knew one thing - that I had A LOT of questions. So over a few months time (prior to my appointment) I wrote down all my questions in a notebook. Then come my appt day I took that notebook with me.

I went through that appointment like I was watching a movie. I felt like they were talking to or about someone else and I was just watching it. Then as I walked out of the office it hit me what was happening and I cried for a few minutes and then I was done. Funny thing though out of all of those questions none of the answers helped me make my decision. I spent 3 weeks thinking and trying to decide if it was worth it. I couldn't make up my mind.

So I asked my mom and she said it is your decision I am not going to tell you what I want you to do because you know what I would want you to do. My dad, Kurt, my best friends and extended family all said the same it is up to you whatever you decide we will stand behind you. Then I went back to Kurt (my fiance) and I asked him seriously what would he do. He told me obviously he didn't want to lose me but if I chose not to he would understand then he said .. "You just have to decide if 6 months would be worth it? Would 6 months be worth the pain, the rehab, all the WORK?" I just sat there and I looked at him and said all I want is one day to REALLY BREATHE. Without taking aerosols, without coughing, without an inhaler, 6 months without a hospital stay would be great so all in all 1 really fantastic day would be worth it.

It was that question that helped make up my mind. "Would 6 months would be worth it?"


Now almost 2 years post I must say it was the hardest but easily the best decision I have ever made in my life. I was not ready to leave this place yet I still had things I wanted to do and I am doing them now.

If you are worried about whether or not you can be productive and fulfill a life that saved yours easily. If you want to - if everything goes right ABSOLUTELY even if everything doesn't go right you can still fulfill things.

I am back in school fulltime hoping to start at a College of Pharmacy next year this time. I am working about 30 hours a week. I volunteer with the local transplant charities and still do things with the transplant center. I go out with friends and try to just enjoy life.

Yes you will take meds afterwards - yes there are alot initially but I will be honest I took more meds pre transplant than I take now. I took about the same pre transplant that I took immediately post transplant. Now it only takes about 2 minutes to take them because they are all pills instead of aerosols and CPT and such.

I am not going to lie and say it is easy because it isn't BUT if you want to do it and you have someone or someoneS say that they will help you then don't doubt them take them up on it because it can be worth it if you are willing to put the work in. YOU have to be dedicated to it though out of everyone because YOU have to live with it for the rest of your life - not your friends and family ... YOU.

I don't know if ANY of that helped at all I know it is a bit long but I wanted you to understand that I was not always pro transplant. Now I still understand that it is not for everyone but it has been amazing for me and I would do it again tomorrow if it was needed.

Good Luck,
Lindsey

 

[coltsfan715]

I will be honest and I may have just interpreted your post but it almost seems like you just want someone to tell you its okay to say no to transplant. If that is the case it is - it is fully an individual decision and you should NOT let the opinions of others sway you in any way be it that you want a transplant or not.

That being said I will say ...

I wondered for a time if transplant was even worth it in general. Would I have more issues than I started with would I be able to do it - would I be strong enough. Just about 2 years prior to my being listed I was opposed to transplant for myself because of a book I had read. THEN as I started to see my health declining and I realized - hey wait there are still some things I want to do - I decided to look into it.

I was still undecided the day I had my first appt at the transplant center. I was very unsure and only knew one thing - that I had A LOT of questions. So over a few months time (prior to my appointment) I wrote down all my questions in a notebook. Then come my appt day I took that notebook with me.

I went through that appointment like I was watching a movie. I felt like they were talking to or about someone else and I was just watching it. Then as I walked out of the office it hit me what was happening and I cried for a few minutes and then I was done. Funny thing though out of all of those questions none of the answers helped me make my decision. I spent 3 weeks thinking and trying to decide if it was worth it. I couldn't make up my mind.

So I asked my mom and she said it is your decision I am not going to tell you what I want you to do because you know what I would want you to do. My dad, Kurt, my best friends and extended family all said the same it is up to you whatever you decide we will stand behind you. Then I went back to Kurt (my fiance) and I asked him seriously what would he do. He told me obviously he didn't want to lose me but if I chose not to he would understand then he said .. "You just have to decide if 6 months would be worth it? Would 6 months be worth the pain, the rehab, all the WORK?" I just sat there and I looked at him and said all I want is one day to REALLY BREATHE. Without taking aerosols, without coughing, without an inhaler, 6 months without a hospital stay would be great so all in all 1 really fantastic day would be worth it.

It was that question that helped make up my mind. "Would 6 months would be worth it?"


Now almost 2 years post I must say it was the hardest but easily the best decision I have ever made in my life. I was not ready to leave this place yet I still had things I wanted to do and I am doing them now.

If you are worried about whether or not you can be productive and fulfill a life that saved yours easily. If you want to - if everything goes right ABSOLUTELY even if everything doesn't go right you can still fulfill things.

I am back in school fulltime hoping to start at a College of Pharmacy next year this time. I am working about 30 hours a week. I volunteer with the local transplant charities and still do things with the transplant center. I go out with friends and try to just enjoy life.

Yes you will take meds afterwards - yes there are alot initially but I will be honest I took more meds pre transplant than I take now. I took about the same pre transplant that I took immediately post transplant. Now it only takes about 2 minutes to take them because they are all pills instead of aerosols and CPT and such.

I am not going to lie and say it is easy because it isn't BUT if you want to do it and you have someone or someoneS say that they will help you then don't doubt them take them up on it because it can be worth it if you are willing to put the work in. YOU have to be dedicated to it though out of everyone because YOU have to live with it for the rest of your life - not your friends and family ... YOU.

I don't know if ANY of that helped at all I know it is a bit long but I wanted you to understand that I was not always pro transplant. Now I still understand that it is not for everyone but it has been amazing for me and I would do it again tomorrow if it was needed.

Good Luck,
Lindsey

 

[coltsfan715]

I will be honest and I may have just interpreted your post but it almost seems like you just want someone to tell you its okay to say no to transplant. If that is the case it is - it is fully an individual decision and you should NOT let the opinions of others sway you in any way be it that you want a transplant or not.
<br />
<br />That being said I will say ...
<br />
<br />I wondered for a time if transplant was even worth it in general. Would I have more issues than I started with would I be able to do it - would I be strong enough. Just about 2 years prior to my being listed I was opposed to transplant for myself because of a book I had read. THEN as I started to see my health declining and I realized - hey wait there are still some things I want to do - I decided to look into it.
<br />
<br />I was still undecided the day I had my first appt at the transplant center. I was very unsure and only knew one thing - that I had A LOT of questions. So over a few months time (prior to my appointment) I wrote down all my questions in a notebook. Then come my appt day I took that notebook with me.
<br />
<br />I went through that appointment like I was watching a movie. I felt like they were talking to or about someone else and I was just watching it. Then as I walked out of the office it hit me what was happening and I cried for a few minutes and then I was done. Funny thing though out of all of those questions none of the answers helped me make my decision. I spent 3 weeks thinking and trying to decide if it was worth it. I couldn't make up my mind.
<br />
<br />So I asked my mom and she said it is your decision I am not going to tell you what I want you to do because you know what I would want you to do. My dad, Kurt, my best friends and extended family all said the same it is up to you whatever you decide we will stand behind you. Then I went back to Kurt (my fiance) and I asked him seriously what would he do. He told me obviously he didn't want to lose me but if I chose not to he would understand then he said .. "You just have to decide if 6 months would be worth it? Would 6 months be worth the pain, the rehab, all the WORK?" I just sat there and I looked at him and said all I want is one day to REALLY BREATHE. Without taking aerosols, without coughing, without an inhaler, 6 months without a hospital stay would be great so all in all 1 really fantastic day would be worth it.
<br />
<br />It was that question that helped make up my mind. "Would 6 months would be worth it?"
<br />
<br />
<br />Now almost 2 years post I must say it was the hardest but easily the best decision I have ever made in my life. I was not ready to leave this place yet I still had things I wanted to do and I am doing them now.
<br />
<br />If you are worried about whether or not you can be productive and fulfill a life that saved yours easily. If you want to - if everything goes right ABSOLUTELY even if everything doesn't go right you can still fulfill things.
<br />
<br />I am back in school fulltime hoping to start at a College of Pharmacy next year this time. I am working about 30 hours a week. I volunteer with the local transplant charities and still do things with the transplant center. I go out with friends and try to just enjoy life.
<br />
<br />Yes you will take meds afterwards - yes there are alot initially but I will be honest I took more meds pre transplant than I take now. I took about the same pre transplant that I took immediately post transplant. Now it only takes about 2 minutes to take them because they are all pills instead of aerosols and CPT and such.
<br />
<br />I am not going to lie and say it is easy because it isn't BUT if you want to do it and you have someone or someoneS say that they will help you then don't doubt them take them up on it because it can be worth it if you are willing to put the work in. YOU have to be dedicated to it though out of everyone because YOU have to live with it for the rest of your life - not your friends and family ... YOU.
<br />
<br />I don't know if ANY of that helped at all I know it is a bit long but I wanted you to understand that I was not always pro transplant. Now I still understand that it is not for everyone but it has been amazing for me and I would do it again tomorrow if it was needed.
<br />
<br />Good Luck,
<br />Lindsey

 

[mamaScarlett]

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

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now)


Thoughts?



</end quote></div>

Easier said than done...but you shouldn't make a decision this difficult if you are depressed even if it is mildly.

I've had a happy yet tragic life as well, and speaking from experience-talk with a professional about your feelings. And go from there. You may feel exactly the same as you do now, but you'll have thought things through with the help of someone who truly understands.
Cfers battle everyday-and its exhausting. It can catch up with you. There's so many great professionals in the cf world-they are there for you.
I also think its great to come here and speak to people that have been through a transplant for their experience.

 

[mamaScarlett]

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

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now)


Thoughts?



</end quote></div>

Easier said than done...but you shouldn't make a decision this difficult if you are depressed even if it is mildly.

I've had a happy yet tragic life as well, and speaking from experience-talk with a professional about your feelings. And go from there. You may feel exactly the same as you do now, but you'll have thought things through with the help of someone who truly understands.
Cfers battle everyday-and its exhausting. It can catch up with you. There's so many great professionals in the cf world-they are there for you.
I also think its great to come here and speak to people that have been through a transplant for their experience.

 

[mamaScarlett]

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

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now)


Thoughts?



</end quote></div>

Easier said than done...but you shouldn't make a decision this difficult if you are depressed even if it is mildly.

I've had a happy yet tragic life as well, and speaking from experience-talk with a professional about your feelings. And go from there. You may feel exactly the same as you do now, but you'll have thought things through with the help of someone who truly understands.
Cfers battle everyday-and its exhausting. It can catch up with you. There's so many great professionals in the cf world-they are there for you.
I also think its great to come here and speak to people that have been through a transplant for their experience.

 

[mamaScarlett]

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

So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now)


Thoughts?



</end quote>

Easier said than done...but you shouldn't make a decision this difficult if you are depressed even if it is mildly.

I've had a happy yet tragic life as well, and speaking from experience-talk with a professional about your feelings. And go from there. You may feel exactly the same as you do now, but you'll have thought things through with the help of someone who truly understands.
Cfers battle everyday-and its exhausting. It can catch up with you. There's so many great professionals in the cf world-they are there for you.
I also think its great to come here and speak to people that have been through a transplant for their experience.

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Grendel</b></i>
<br />
<br />So I ask, with an uncertain future - certainly full of ups and downs (I may be a bit depressed right now)
<br />
<br />
<br />Thoughts?
<br />
<br />
<br />
<br /></end quote>
<br />
<br />Easier said than done...but you shouldn't make a decision this difficult if you are depressed even if it is mildly.
<br />
<br />I've had a happy yet tragic life as well, and speaking from experience-talk with a professional about your feelings. And go from there. You may feel exactly the same as you do now, but you'll have thought things through with the help of someone who truly understands.
<br />Cfers battle everyday-and its exhausting. It can catch up with you. There's so many great professionals in the cf world-they are there for you.
<br />I also think its great to come here and speak to people that have been through a transplant for their experience.