How Do I Make This Decission?

A

annieop86

New member
I went to the doctor again yesterday and he said we have to start talking about lung transplants now. He gave me a whole bunch of literature and told me to think about it and get back to him in a month. I have absolutely no idea how to even begin to think about getting a transplant. Everytime even start to remotely think about it I just start balling with anxiety. My FEV1 is 17% and I know thats really really bad.

Please help me!!! anyone who has had a transplant I would really like to hear how it went for you, all the ups and downs. They told me at the clinic the best way to understand a transplant is to talk to people who have had it. If you message me, I can give you my home phone number, maybe we can talk on the phone or something. Anything would help.
 
A

annieop86

New member
I went to the doctor again yesterday and he said we have to start talking about lung transplants now. He gave me a whole bunch of literature and told me to think about it and get back to him in a month. I have absolutely no idea how to even begin to think about getting a transplant. Everytime even start to remotely think about it I just start balling with anxiety. My FEV1 is 17% and I know thats really really bad.

Please help me!!! anyone who has had a transplant I would really like to hear how it went for you, all the ups and downs. They told me at the clinic the best way to understand a transplant is to talk to people who have had it. If you message me, I can give you my home phone number, maybe we can talk on the phone or something. Anything would help.
 
A

annieop86

New member
I went to the doctor again yesterday and he said we have to start talking about lung transplants now. He gave me a whole bunch of literature and told me to think about it and get back to him in a month. I have absolutely no idea how to even begin to think about getting a transplant. Everytime even start to remotely think about it I just start balling with anxiety. My FEV1 is 17% and I know thats really really bad.

Please help me!!! anyone who has had a transplant I would really like to hear how it went for you, all the ups and downs. They told me at the clinic the best way to understand a transplant is to talk to people who have had it. If you message me, I can give you my home phone number, maybe we can talk on the phone or something. Anything would help.
 
A

annieop86

New member
I went to the doctor again yesterday and he said we have to start talking about lung transplants now. He gave me a whole bunch of literature and told me to think about it and get back to him in a month. I have absolutely no idea how to even begin to think about getting a transplant. Everytime even start to remotely think about it I just start balling with anxiety. My FEV1 is 17% and I know thats really really bad.

Please help me!!! anyone who has had a transplant I would really like to hear how it went for you, all the ups and downs. They told me at the clinic the best way to understand a transplant is to talk to people who have had it. If you message me, I can give you my home phone number, maybe we can talk on the phone or something. Anything would help.
 
A

annieop86

New member
I went to the doctor again yesterday and he said we have to start talking about lung transplants now. He gave me a whole bunch of literature and told me to think about it and get back to him in a month. I have absolutely no idea how to even begin to think about getting a transplant. Everytime even start to remotely think about it I just start balling with anxiety. My FEV1 is 17% and I know thats really really bad.
<br />
<br />Please help me!!! anyone who has had a transplant I would really like to hear how it went for you, all the ups and downs. They told me at the clinic the best way to understand a transplant is to talk to people who have had it. If you message me, I can give you my home phone number, maybe we can talk on the phone or something. Anything would help.
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> Hi Hon...
My name is Lisa and my daughter Kari received TWO lung transplants that unfortunately did not work and she passed in May 2008 at the age of 27 years old. She also had a daughter who will be 7 in Feb... My heart breaks 4 U having to make this VERY DIFFICULT decision...Kari had her 1st one on Xmas day 2003 (double) and the 2nd one Jan 2006 (single). She was very close to death both times... the 1st one she did not get to come HOME til May... She developed chronic rejection and then humeral rejection and also had a reperfusion injury BOTH times... So she did NOT have a good time needless to say she also suffered a MAJOR bowel surgery ONE WEEK after we brought her home in May after the 1st one... Sorry for being blunt... BUT she wanted to live so badly for her little girl that after ALL THAT PAIN she BEGGED them for a THIRD!!! I asked her shortly before her death if she had to do it all over again would she??? And she said YES. Transplant is NOT a cure in fact it is a WHOLE other disease in a way... In my opinion 90% of the battle is your MIND YOU HAVE TO BE MENTALLY STRONG THAT IS PARAMOUNT I FEEL... I know of some who have had a wonderful outcome and some like Kari that did not... If you are NOT ready to give up then I would say go for it depending on how strong you are mentally and if you have a GOOD support from family etc that is VERY important as well... How old R U? I also have a 23 yr old daughter w/CF who has always been pretty "healthy" only in hospital FIVE times ever! She says that she does not think that she could do it she is definitely not as strong mentally as her sister so again it is really a PERSONAL choice. Hearing 100 different stories will probably only confuse you as EVERYONES journey is unique and different. My daughter Holli Jade says to give you her phone # if You would like to talk to her it is 916-367-6171 she lives in Rocklin California and she is VERY knowledgeable about TX. I wish you all the best and will say some prayers for you. Also here is a link to Kari's caringbridge site which tells the story of the end of her life...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/karirankin
">http://www.caringbridge.org/visit/karirankin
</a>
peace.

lisa <img src="i/expressions/rose.gif" border="0">
lisa
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> Hi Hon...
My name is Lisa and my daughter Kari received TWO lung transplants that unfortunately did not work and she passed in May 2008 at the age of 27 years old. She also had a daughter who will be 7 in Feb... My heart breaks 4 U having to make this VERY DIFFICULT decision...Kari had her 1st one on Xmas day 2003 (double) and the 2nd one Jan 2006 (single). She was very close to death both times... the 1st one she did not get to come HOME til May... She developed chronic rejection and then humeral rejection and also had a reperfusion injury BOTH times... So she did NOT have a good time needless to say she also suffered a MAJOR bowel surgery ONE WEEK after we brought her home in May after the 1st one... Sorry for being blunt... BUT she wanted to live so badly for her little girl that after ALL THAT PAIN she BEGGED them for a THIRD!!! I asked her shortly before her death if she had to do it all over again would she??? And she said YES. Transplant is NOT a cure in fact it is a WHOLE other disease in a way... In my opinion 90% of the battle is your MIND YOU HAVE TO BE MENTALLY STRONG THAT IS PARAMOUNT I FEEL... I know of some who have had a wonderful outcome and some like Kari that did not... If you are NOT ready to give up then I would say go for it depending on how strong you are mentally and if you have a GOOD support from family etc that is VERY important as well... How old R U? I also have a 23 yr old daughter w/CF who has always been pretty "healthy" only in hospital FIVE times ever! She says that she does not think that she could do it she is definitely not as strong mentally as her sister so again it is really a PERSONAL choice. Hearing 100 different stories will probably only confuse you as EVERYONES journey is unique and different. My daughter Holli Jade says to give you her phone # if You would like to talk to her it is 916-367-6171 she lives in Rocklin California and she is VERY knowledgeable about TX. I wish you all the best and will say some prayers for you. Also here is a link to Kari's caringbridge site which tells the story of the end of her life...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/karirankin
">http://www.caringbridge.org/visit/karirankin
</a>
peace.

lisa <img src="i/expressions/rose.gif" border="0">
lisa
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> Hi Hon...
My name is Lisa and my daughter Kari received TWO lung transplants that unfortunately did not work and she passed in May 2008 at the age of 27 years old. She also had a daughter who will be 7 in Feb... My heart breaks 4 U having to make this VERY DIFFICULT decision...Kari had her 1st one on Xmas day 2003 (double) and the 2nd one Jan 2006 (single). She was very close to death both times... the 1st one she did not get to come HOME til May... She developed chronic rejection and then humeral rejection and also had a reperfusion injury BOTH times... So she did NOT have a good time needless to say she also suffered a MAJOR bowel surgery ONE WEEK after we brought her home in May after the 1st one... Sorry for being blunt... BUT she wanted to live so badly for her little girl that after ALL THAT PAIN she BEGGED them for a THIRD!!! I asked her shortly before her death if she had to do it all over again would she??? And she said YES. Transplant is NOT a cure in fact it is a WHOLE other disease in a way... In my opinion 90% of the battle is your MIND YOU HAVE TO BE MENTALLY STRONG THAT IS PARAMOUNT I FEEL... I know of some who have had a wonderful outcome and some like Kari that did not... If you are NOT ready to give up then I would say go for it depending on how strong you are mentally and if you have a GOOD support from family etc that is VERY important as well... How old R U? I also have a 23 yr old daughter w/CF who has always been pretty "healthy" only in hospital FIVE times ever! She says that she does not think that she could do it she is definitely not as strong mentally as her sister so again it is really a PERSONAL choice. Hearing 100 different stories will probably only confuse you as EVERYONES journey is unique and different. My daughter Holli Jade says to give you her phone # if You would like to talk to her it is 916-367-6171 she lives in Rocklin California and she is VERY knowledgeable about TX. I wish you all the best and will say some prayers for you. Also here is a link to Kari's caringbridge site which tells the story of the end of her life...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/karirankin
">http://www.caringbridge.org/visit/karirankin
</a>
peace.

lisa <img src="i/expressions/rose.gif" border="0">
lisa
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> Hi Hon...
My name is Lisa and my daughter Kari received TWO lung transplants that unfortunately did not work and she passed in May 2008 at the age of 27 years old. She also had a daughter who will be 7 in Feb... My heart breaks 4 U having to make this VERY DIFFICULT decision...Kari had her 1st one on Xmas day 2003 (double) and the 2nd one Jan 2006 (single). She was very close to death both times... the 1st one she did not get to come HOME til May... She developed chronic rejection and then humeral rejection and also had a reperfusion injury BOTH times... So she did NOT have a good time needless to say she also suffered a MAJOR bowel surgery ONE WEEK after we brought her home in May after the 1st one... Sorry for being blunt... BUT she wanted to live so badly for her little girl that after ALL THAT PAIN she BEGGED them for a THIRD!!! I asked her shortly before her death if she had to do it all over again would she??? And she said YES. Transplant is NOT a cure in fact it is a WHOLE other disease in a way... In my opinion 90% of the battle is your MIND YOU HAVE TO BE MENTALLY STRONG THAT IS PARAMOUNT I FEEL... I know of some who have had a wonderful outcome and some like Kari that did not... If you are NOT ready to give up then I would say go for it depending on how strong you are mentally and if you have a GOOD support from family etc that is VERY important as well... How old R U? I also have a 23 yr old daughter w/CF who has always been pretty "healthy" only in hospital FIVE times ever! She says that she does not think that she could do it she is definitely not as strong mentally as her sister so again it is really a PERSONAL choice. Hearing 100 different stories will probably only confuse you as EVERYONES journey is unique and different. My daughter Holli Jade says to give you her phone # if You would like to talk to her it is 916-367-6171 she lives in Rocklin California and she is VERY knowledgeable about TX. I wish you all the best and will say some prayers for you. Also here is a link to Kari's caringbridge site which tells the story of the end of her life...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/karirankin
">http://www.caringbridge.org/visit/karirankin
</a>
peace.

lisa <img src="i/expressions/rose.gif" border="0">
lisa
 
K

karismom

New member
<img src="i/expressions/heart.gif" border="0"> Hi Hon...
<br />My name is Lisa and my daughter Kari received TWO lung transplants that unfortunately did not work and she passed in May 2008 at the age of 27 years old. She also had a daughter who will be 7 in Feb... My heart breaks 4 U having to make this VERY DIFFICULT decision...Kari had her 1st one on Xmas day 2003 (double) and the 2nd one Jan 2006 (single). She was very close to death both times... the 1st one she did not get to come HOME til May... She developed chronic rejection and then humeral rejection and also had a reperfusion injury BOTH times... So she did NOT have a good time needless to say she also suffered a MAJOR bowel surgery ONE WEEK after we brought her home in May after the 1st one... Sorry for being blunt... BUT she wanted to live so badly for her little girl that after ALL THAT PAIN she BEGGED them for a THIRD!!! I asked her shortly before her death if she had to do it all over again would she??? And she said YES. Transplant is NOT a cure in fact it is a WHOLE other disease in a way... In my opinion 90% of the battle is your MIND YOU HAVE TO BE MENTALLY STRONG THAT IS PARAMOUNT I FEEL... I know of some who have had a wonderful outcome and some like Kari that did not... If you are NOT ready to give up then I would say go for it depending on how strong you are mentally and if you have a GOOD support from family etc that is VERY important as well... How old R U? I also have a 23 yr old daughter w/CF who has always been pretty "healthy" only in hospital FIVE times ever! She says that she does not think that she could do it she is definitely not as strong mentally as her sister so again it is really a PERSONAL choice. Hearing 100 different stories will probably only confuse you as EVERYONES journey is unique and different. My daughter Holli Jade says to give you her phone # if You would like to talk to her it is 916-367-6171 she lives in Rocklin California and she is VERY knowledgeable about TX. I wish you all the best and will say some prayers for you. Also here is a link to Kari's caringbridge site which tells the story of the end of her life...
<br />
<br /> <a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/karirankin
">http://www.caringbridge.org/visit/karirankin
</a><br />
<br />peace.
<br />
<br />lisa <img src="i/expressions/rose.gif" border="0">
<br />lisa
 
S

SarahJean1976

New member
Annie... My heart breaks when I hear this and I just wanted to tell you that I am praying for you and listen to your heart... Karis mom is right on the fact that every person's story is going to be different... I had always thought that TX was not for me... until I met the co founder of our non profit... He had a double lung transplant almost 2 years ago and is doing great... I think it is amazing and now after hearing his story of he chose to live, I don't think I could do it any other way... GO GET ON A LIST!!! If it is in God's Plan then it will come... Please know that hon this is only my opinion and I have not lived through it, but I am ging to pass this along to couple girls I think you would love to talk to... DO you have a myspace? If you do, add us search under breathe4tomorrow@yahoo.com...
Keep your head up girlie and know that we are all pulling for you and praying for you... Try to stay as positive as you can... I know that is so cliche and way easier for meto write than it may be to practice at times... but you stay strong and just know that we are here...
xoxo
Sarah Jean
 
S

SarahJean1976

New member
Annie... My heart breaks when I hear this and I just wanted to tell you that I am praying for you and listen to your heart... Karis mom is right on the fact that every person's story is going to be different... I had always thought that TX was not for me... until I met the co founder of our non profit... He had a double lung transplant almost 2 years ago and is doing great... I think it is amazing and now after hearing his story of he chose to live, I don't think I could do it any other way... GO GET ON A LIST!!! If it is in God's Plan then it will come... Please know that hon this is only my opinion and I have not lived through it, but I am ging to pass this along to couple girls I think you would love to talk to... DO you have a myspace? If you do, add us search under breathe4tomorrow@yahoo.com...
Keep your head up girlie and know that we are all pulling for you and praying for you... Try to stay as positive as you can... I know that is so cliche and way easier for meto write than it may be to practice at times... but you stay strong and just know that we are here...
xoxo
Sarah Jean
 
S

SarahJean1976

New member
Annie... My heart breaks when I hear this and I just wanted to tell you that I am praying for you and listen to your heart... Karis mom is right on the fact that every person's story is going to be different... I had always thought that TX was not for me... until I met the co founder of our non profit... He had a double lung transplant almost 2 years ago and is doing great... I think it is amazing and now after hearing his story of he chose to live, I don't think I could do it any other way... GO GET ON A LIST!!! If it is in God's Plan then it will come... Please know that hon this is only my opinion and I have not lived through it, but I am ging to pass this along to couple girls I think you would love to talk to... DO you have a myspace? If you do, add us search under breathe4tomorrow@yahoo.com...
Keep your head up girlie and know that we are all pulling for you and praying for you... Try to stay as positive as you can... I know that is so cliche and way easier for meto write than it may be to practice at times... but you stay strong and just know that we are here...
xoxo
Sarah Jean
 
S

SarahJean1976

New member
Annie... My heart breaks when I hear this and I just wanted to tell you that I am praying for you and listen to your heart... Karis mom is right on the fact that every person's story is going to be different... I had always thought that TX was not for me... until I met the co founder of our non profit... He had a double lung transplant almost 2 years ago and is doing great... I think it is amazing and now after hearing his story of he chose to live, I don't think I could do it any other way... GO GET ON A LIST!!! If it is in God's Plan then it will come... Please know that hon this is only my opinion and I have not lived through it, but I am ging to pass this along to couple girls I think you would love to talk to... DO you have a myspace? If you do, add us search under breathe4tomorrow@yahoo.com...
Keep your head up girlie and know that we are all pulling for you and praying for you... Try to stay as positive as you can... I know that is so cliche and way easier for meto write than it may be to practice at times... but you stay strong and just know that we are here...
xoxo
Sarah Jean
 
S

SarahJean1976

New member
Annie... My heart breaks when I hear this and I just wanted to tell you that I am praying for you and listen to your heart... Karis mom is right on the fact that every person's story is going to be different... I had always thought that TX was not for me... until I met the co founder of our non profit... He had a double lung transplant almost 2 years ago and is doing great... I think it is amazing and now after hearing his story of he chose to live, I don't think I could do it any other way... GO GET ON A LIST!!! If it is in God's Plan then it will come... Please know that hon this is only my opinion and I have not lived through it, but I am ging to pass this along to couple girls I think you would love to talk to... DO you have a myspace? If you do, add us search under breathe4tomorrow@yahoo.com...
<br />Keep your head up girlie and know that we are all pulling for you and praying for you... Try to stay as positive as you can... I know that is so cliche and way easier for meto write than it may be to practice at times... but you stay strong and just know that we are here...
<br />xoxo
<br />Sarah Jean
 
F

fr3ak

Guest
erm... what happened to my previous reply?
<br />
<br />34cf/f/tx 2002
 
You must log in or register to reply here.
Top