Considering the choice of not lising.

jamiebug · Dec 8, 2009

I am coming right up on my 2 year post lung transplant anniversary. I actually posted on my blog about where I was 2 years ago. . . It was the day I was going to die of CF. I didn't really have the option of a transplant offered to me due to having Cepacia for 16 years. So I let CF run it's course. I just couldn't allow myself to go down without a fight, so I fought for new lungs. You can watch some video of what it's like to die from CF. It's a personal choice, but I don't think one is better or worse than the other. Both will full of pain, suffering and complications. One however does offer hope. I know you will make whatever decision is right for you. It does depend on what you have to live for. I couldn't leave my husband behind without knowing I had tried everything. Good Luck with whatever you choose to do.

Here is a link to my blog. . . <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a>

jamiebug · Dec 8, 2009

I am coming right up on my 2 year post lung transplant anniversary. I actually posted on my blog about where I was 2 years ago. . . It was the day I was going to die of CF. I didn't really have the option of a transplant offered to me due to having Cepacia for 16 years. So I let CF run it's course. I just couldn't allow myself to go down without a fight, so I fought for new lungs. You can watch some video of what it's like to die from CF. It's a personal choice, but I don't think one is better or worse than the other. Both will full of pain, suffering and complications. One however does offer hope. I know you will make whatever decision is right for you. It does depend on what you have to live for. I couldn't leave my husband behind without knowing I had tried everything. Good Luck with whatever you choose to do.

Here is a link to my blog. . . <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a>

jamiebug · Dec 8, 2009

I am coming right up on my 2 year post lung transplant anniversary. I actually posted on my blog about where I was 2 years ago. . . It was the day I was going to die of CF. I didn't really have the option of a transplant offered to me due to having Cepacia for 16 years. So I let CF run it's course. I just couldn't allow myself to go down without a fight, so I fought for new lungs. You can watch some video of what it's like to die from CF. It's a personal choice, but I don't think one is better or worse than the other. Both will full of pain, suffering and complications. One however does offer hope. I know you will make whatever decision is right for you. It does depend on what you have to live for. I couldn't leave my husband behind without knowing I had tried everything. Good Luck with whatever you choose to do.

Here is a link to my blog. . . <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a>

jamiebug · Dec 8, 2009

I am coming right up on my 2 year post lung transplant anniversary. I actually posted on my blog about where I was 2 years ago. . . It was the day I was going to die of CF. I didn't really have the option of a transplant offered to me due to having Cepacia for 16 years. So I let CF run it's course. I just couldn't allow myself to go down without a fight, so I fought for new lungs. You can watch some video of what it's like to die from CF. It's a personal choice, but I don't think one is better or worse than the other. Both will full of pain, suffering and complications. One however does offer hope. I know you will make whatever decision is right for you. It does depend on what you have to live for. I couldn't leave my husband behind without knowing I had tried everything. Good Luck with whatever you choose to do.

Here is a link to my blog. . . <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a>

jamiebug · Dec 8, 2009

I am coming right up on my 2 year post lung transplant anniversary. I actually posted on my blog about where I was 2 years ago. . . It was the day I was going to die of CF. I didn't really have the option of a transplant offered to me due to having Cepacia for 16 years. So I let CF run it's course. I just couldn't allow myself to go down without a fight, so I fought for new lungs. You can watch some video of what it's like to die from CF. It's a personal choice, but I don't think one is better or worse than the other. Both will full of pain, suffering and complications. One however does offer hope. I know you will make whatever decision is right for you. It does depend on what you have to live for. I couldn't leave my husband behind without knowing I had tried everything. Good Luck with whatever you choose to do.
 
 Here is a link to my blog. . . <a target=_blank class=ftalternatingbarlinklarge href="http://www.jamiebug.blogspot.com">http://www.jamiebug.blogspot.com</a>

beckysue · Dec 22, 2009

Three years ago I had an anaphylactic reaction to Cefepime. I was in the ICU and intubated for 3 days before they figured out what had happened (I'd been on the med before with only vomiting as a side effect). Everyone was shocked that I came off of the vent since my PFT's had been running in the mid-30% range. Shortly after, my doctor said it was the time to make the decision if I wanted to be evaluated for a transplant. I thought about it for a long time and decided it was not for me. It was one of the hardest things I did, but I told my husband, family, and friends and was pleasantly surprised that they were all so supportive. I was comfortable with my decision and with only a few doubts I went on with the business of living.
Around Christmas of last year I started reevaluating my decision. I heard a story of another CFer here at my hospital who got her new lungs and was so overwhelmed at her story that I started crying. I realized in that moment that I wanted the chance to breath fully. So, after talking with my husband I decided to start the transplant process. I had a major freak out in May of this year after completing most of the process so we ran away to Florida for a week to get away from it all. But after having time to absorb all the information I decided it's really what I wanted and I was officially listed on October 15th.
All this to say...follow your heart. I prayed so much about my initial decision and agonized over it for weeks. After changing my mind I thought that somehow I was just kidding myself before and truly wanted it all along. But here's the thing. I lived 3 more years with the lungs I have because of the decision I made and may have very well extended my life beyond what a transplant at that time could have done. In the meantime, my CF center re-established their lung transplant program and I'm now able to stay where I love and with the people I know. I am so thankful that I made the decision I did then. I encourage you to do what you believe is right for you. You never know what will happen in the future.

beckysue · Dec 22, 2009

Three years ago I had an anaphylactic reaction to Cefepime. I was in the ICU and intubated for 3 days before they figured out what had happened (I'd been on the med before with only vomiting as a side effect). Everyone was shocked that I came off of the vent since my PFT's had been running in the mid-30% range. Shortly after, my doctor said it was the time to make the decision if I wanted to be evaluated for a transplant. I thought about it for a long time and decided it was not for me. It was one of the hardest things I did, but I told my husband, family, and friends and was pleasantly surprised that they were all so supportive. I was comfortable with my decision and with only a few doubts I went on with the business of living.
Around Christmas of last year I started reevaluating my decision. I heard a story of another CFer here at my hospital who got her new lungs and was so overwhelmed at her story that I started crying. I realized in that moment that I wanted the chance to breath fully. So, after talking with my husband I decided to start the transplant process. I had a major freak out in May of this year after completing most of the process so we ran away to Florida for a week to get away from it all. But after having time to absorb all the information I decided it's really what I wanted and I was officially listed on October 15th.
All this to say...follow your heart. I prayed so much about my initial decision and agonized over it for weeks. After changing my mind I thought that somehow I was just kidding myself before and truly wanted it all along. But here's the thing. I lived 3 more years with the lungs I have because of the decision I made and may have very well extended my life beyond what a transplant at that time could have done. In the meantime, my CF center re-established their lung transplant program and I'm now able to stay where I love and with the people I know. I am so thankful that I made the decision I did then. I encourage you to do what you believe is right for you. You never know what will happen in the future.

beckysue · Dec 22, 2009

Three years ago I had an anaphylactic reaction to Cefepime. I was in the ICU and intubated for 3 days before they figured out what had happened (I'd been on the med before with only vomiting as a side effect). Everyone was shocked that I came off of the vent since my PFT's had been running in the mid-30% range. Shortly after, my doctor said it was the time to make the decision if I wanted to be evaluated for a transplant. I thought about it for a long time and decided it was not for me. It was one of the hardest things I did, but I told my husband, family, and friends and was pleasantly surprised that they were all so supportive. I was comfortable with my decision and with only a few doubts I went on with the business of living.
Around Christmas of last year I started reevaluating my decision. I heard a story of another CFer here at my hospital who got her new lungs and was so overwhelmed at her story that I started crying. I realized in that moment that I wanted the chance to breath fully. So, after talking with my husband I decided to start the transplant process. I had a major freak out in May of this year after completing most of the process so we ran away to Florida for a week to get away from it all. But after having time to absorb all the information I decided it's really what I wanted and I was officially listed on October 15th.
All this to say...follow your heart. I prayed so much about my initial decision and agonized over it for weeks. After changing my mind I thought that somehow I was just kidding myself before and truly wanted it all along. But here's the thing. I lived 3 more years with the lungs I have because of the decision I made and may have very well extended my life beyond what a transplant at that time could have done. In the meantime, my CF center re-established their lung transplant program and I'm now able to stay where I love and with the people I know. I am so thankful that I made the decision I did then. I encourage you to do what you believe is right for you. You never know what will happen in the future.

beckysue · Dec 22, 2009

Three years ago I had an anaphylactic reaction to Cefepime. I was in the ICU and intubated for 3 days before they figured out what had happened (I'd been on the med before with only vomiting as a side effect). Everyone was shocked that I came off of the vent since my PFT's had been running in the mid-30% range. Shortly after, my doctor said it was the time to make the decision if I wanted to be evaluated for a transplant. I thought about it for a long time and decided it was not for me. It was one of the hardest things I did, but I told my husband, family, and friends and was pleasantly surprised that they were all so supportive. I was comfortable with my decision and with only a few doubts I went on with the business of living.
Around Christmas of last year I started reevaluating my decision. I heard a story of another CFer here at my hospital who got her new lungs and was so overwhelmed at her story that I started crying. I realized in that moment that I wanted the chance to breath fully. So, after talking with my husband I decided to start the transplant process. I had a major freak out in May of this year after completing most of the process so we ran away to Florida for a week to get away from it all. But after having time to absorb all the information I decided it's really what I wanted and I was officially listed on October 15th.
All this to say...follow your heart. I prayed so much about my initial decision and agonized over it for weeks. After changing my mind I thought that somehow I was just kidding myself before and truly wanted it all along. But here's the thing. I lived 3 more years with the lungs I have because of the decision I made and may have very well extended my life beyond what a transplant at that time could have done. In the meantime, my CF center re-established their lung transplant program and I'm now able to stay where I love and with the people I know. I am so thankful that I made the decision I did then. I encourage you to do what you believe is right for you. You never know what will happen in the future.

beckysue · Dec 22, 2009

Three years ago I had an anaphylactic reaction to Cefepime. I was in the ICU and intubated for 3 days before they figured out what had happened (I'd been on the med before with only vomiting as a side effect). Everyone was shocked that I came off of the vent since my PFT's had been running in the mid-30% range. Shortly after, my doctor said it was the time to make the decision if I wanted to be evaluated for a transplant. I thought about it for a long time and decided it was not for me. It was one of the hardest things I did, but I told my husband, family, and friends and was pleasantly surprised that they were all so supportive. I was comfortable with my decision and with only a few doubts I went on with the business of living.
 Around Christmas of last year I started reevaluating my decision. I heard a story of another CFer here at my hospital who got her new lungs and was so overwhelmed at her story that I started crying. I realized in that moment that I wanted the chance to breath fully. So, after talking with my husband I decided to start the transplant process. I had a major freak out in May of this year after completing most of the process so we ran away to Florida for a week to get away from it all. But after having time to absorb all the information I decided it's really what I wanted and I was officially listed on October 15th.
 All this to say...follow your heart. I prayed so much about my initial decision and agonized over it for weeks. After changing my mind I thought that somehow I was just kidding myself before and truly wanted it all along. But here's the thing. I lived 3 more years with the lungs I have because of the decision I made and may have very well extended my life beyond what a transplant at that time could have done. In the meantime, my CF center re-established their lung transplant program and I'm now able to stay where I love and with the people I know. I am so thankful that I made the decision I did then. I encourage you to do what you believe is right for you. You never know what will happen in the future.

crystalina0814 · Dec 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

<div class="FTQUOTE"><begin quote>Originally posted by: Lex

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!</end quote></div>

I have to say that this made me tear up... so hard to read now.

crystalina0814 · Dec 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

<div class="FTQUOTE"><begin quote>Originally posted by: Lex

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!</end quote></div>

I have to say that this made me tear up... so hard to read now.

crystalina0814 · Dec 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

<div class="FTQUOTE"><begin quote>Originally posted by: Lex

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote></div>

WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!</end quote></div>

I have to say that this made me tear up... so hard to read now.

crystalina0814 · Dec 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom

<div class="FTQUOTE"><begin quote>Originally posted by: Lex

I'm curious...what are the reasons to not get a transplant?

---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote>

WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!

I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.

I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.

I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.

Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.

I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!

So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.

There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!</end quote>

I have to say that this made me tear up... so hard to read now.

crystalina0814 · Dec 23, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: JazzysMom
 
 <div class="FTQUOTE"><begin quote>Originally posted by: Lex
 
 
 
 I'm curious...what are the reasons to not get a transplant?
 
 
 
 ---not aimed at Beowulf....I'm curious about anyone not wanting TX.</end quote>
 
 
 
 WARNING this ?? has caused some major controversy in the past so PLEASE answer respectfully!
 
 
 
 I think some of it is religous beliefs, but I also think its the unknown. Up until recently (this year)....I was dead set against it.
 
 
 
 I was more worried about possibly relocating my family or being away from them for months or years to see me possibly go through hell & back with surgery/recovery for the what ifs.
 
 
 
 I will be honest & say that the biggest thing was my daughter. I didnt want her to associate ANYTHING regarding tx with death & have it stick in her head.
 
 
 
 Now that my CF has progressed & that I cant do what I want with her.....it has made me realize that all of THESE things stick in her head also.
 
 
 
 I want to see her celebrate her Sweet 16, graduate, go on her first real date etc. I might not due that if I am not willing to consider tx!
 
 
 
 So now I have choice to get listed & am kind of relieved. I have heard the horros & the joys of tx. I hope & pray that if/when I get new lungs that its more joy then horror, but I will never know without trying.
 
 
 
 There will always be a part of me that understands someone not wantint to do it tho & if I didnt have my daughter....I might not have changed my mind!</end quote>
 
 
 I have to say that this made me tear up... so hard to read now.

Lex · Dec 23, 2009