for those who have yet to decide on transplant

S

summer732

New member
Hey Georgiagirl,
<br />I think this is a great question and always ends up with a vibrant discussion. I know you feel a lot of people didn't reply, but I will say most of the time I only come here and check the Transplant section. A question like this might have gotten more attention in that folder.
<br />
<br />It's easy to say that you would not consider a transplant when you are still healthy enough to not need it. For me, I wasn't ready to die yet. Death was inevitable, I knew that it was right around the corner. But for me I figured I'm going to die either way...it would be better to me to die trying to live rather than to just not put my all into it.
<br />
<br />
<br />By the time I needed my transplant, I was no longer healthy enough to go to school...I was on oxygen all the time...I couldn't breathe....didn't want to eat....weighed 78 pounds. My life was no longer mine and it wasn't the life that I had hoped I would had. But I also loved life and knew that I wanted to experience what those around me had in their life.
<br />
<br />Seven years later, I'm still breathing strong...I'm a healthy weight...I ran a half marathon...I work full time...I live in the city....I have fallen in love....been a bridesmaid 8 times....traveled the world...etc. etc. etc. Not everyone's story is like mine. And yes, I have had post transplant complications with the most serious being a tumor in my esophagaus. I have diabetes which is hard to control and I'm at risk for developing certain cancers. But none of this will ever replace the wonderful memories that I was able to generate in the last 7 years because of my transplant.
<br />
<br />Why not give it shot? You might actually be one that gets the wonderful gift of life!
 
A

athanasia

New member
I will first say that Treble is correct on it coming down to if you want to live or not. However, I disagree with it being suicide if you say no. I had a few friends say no because of their own things. They didn't KILL themselves, they lived to the very last breath their original lungs had.

I had similar thoughts for a long time. One of my friends said no with the reasoning being 'if God wanted me to live longer, he would make MY lungs work longer.' This was a few years before it was even an issue for me but I carried it for a long time. When it came time for me to decide to be listed or not, I told this to my then-bf and his response was 'But you have to think, God is the one who gave man the ability to even do transplant. And, in the end He still gets to decide how it goes.' This changed my whole perspective. I got evaluated and listed. Then I maintained for 4 years or so and was inactive on the list.

Then, I went into the hospital with collapsed lung and from April on, was on O2 all the time and slowly losing the ability to eat, get dressed or even walk to the bathroom. If someone stepped on my O2 tubing, I would literally deflate. I spent that summer losing ability to care for myself at all and going in and out of the hospital. I knew it was time. They had asked me then and I knew I wanted the future I had seen for myself that I hadn't had enough time to complete yet. By the end of summer, I was completely calm and ok with everything. I knew that it was out of my control. I made the choice and was doing what I could to take care of myself and spent all my time with my family that I could. In September, I got bad fast. I had to be put on the vent because of my CO2 getting so high.

I got life-flighted to my tx center and was in a coma by the time I arrived and woke up the next day with new lungs. I know I am very lucky and blessed that it went so well and happened at all but I will tell you, everyday I look back and remember what it was like to take that first breath off the vent after. Even if that is all I got to experience, it was worth it. It is beautiful. Plus, that was 4 years ago. Technology and knowledge has gotten so much better since then. Scars are less then what they were, medications are better all the time, they are getting better at matching donors to recipients so all these things are going to better your chances. (I am currently in a grad program studying to become an organ procurement coordinator so we are learning all about this stuff.)

I don't mean to push you either way. It is a very personal choice that you have to make sure is what you want. I am just trying to tell you that I went in fully aware that it is a risk with no guarantees and that it would have work involved to maintain (meds, exercise, lots of docs, etc) but I could have never anticipated how AMAZING it is to be able to breathe no matter how many breaths I get.
 
A

athanasia

New member
I will first say that Treble is correct on it coming down to if you want to live or not. However, I disagree with it being suicide if you say no. I had a few friends say no because of their own things. They didn't KILL themselves, they lived to the very last breath their original lungs had.

I had similar thoughts for a long time. One of my friends said no with the reasoning being 'if God wanted me to live longer, he would make MY lungs work longer.' This was a few years before it was even an issue for me but I carried it for a long time. When it came time for me to decide to be listed or not, I told this to my then-bf and his response was 'But you have to think, God is the one who gave man the ability to even do transplant. And, in the end He still gets to decide how it goes.' This changed my whole perspective. I got evaluated and listed. Then I maintained for 4 years or so and was inactive on the list.

Then, I went into the hospital with collapsed lung and from April on, was on O2 all the time and slowly losing the ability to eat, get dressed or even walk to the bathroom. If someone stepped on my O2 tubing, I would literally deflate. I spent that summer losing ability to care for myself at all and going in and out of the hospital. I knew it was time. They had asked me then and I knew I wanted the future I had seen for myself that I hadn't had enough time to complete yet. By the end of summer, I was completely calm and ok with everything. I knew that it was out of my control. I made the choice and was doing what I could to take care of myself and spent all my time with my family that I could. In September, I got bad fast. I had to be put on the vent because of my CO2 getting so high.

I got life-flighted to my tx center and was in a coma by the time I arrived and woke up the next day with new lungs. I know I am very lucky and blessed that it went so well and happened at all but I will tell you, everyday I look back and remember what it was like to take that first breath off the vent after. Even if that is all I got to experience, it was worth it. It is beautiful. Plus, that was 4 years ago. Technology and knowledge has gotten so much better since then. Scars are less then what they were, medications are better all the time, they are getting better at matching donors to recipients so all these things are going to better your chances. (I am currently in a grad program studying to become an organ procurement coordinator so we are learning all about this stuff.)

I don't mean to push you either way. It is a very personal choice that you have to make sure is what you want. I am just trying to tell you that I went in fully aware that it is a risk with no guarantees and that it would have work involved to maintain (meds, exercise, lots of docs, etc) but I could have never anticipated how AMAZING it is to be able to breathe no matter how many breaths I get.
 
A

athanasia

New member
I will first say that Treble is correct on it coming down to if you want to live or not. However, I disagree with it being suicide if you say no. I had a few friends say no because of their own things. They didn't KILL themselves, they lived to the very last breath their original lungs had.
<br />
<br />I had similar thoughts for a long time. One of my friends said no with the reasoning being 'if God wanted me to live longer, he would make MY lungs work longer.' This was a few years before it was even an issue for me but I carried it for a long time. When it came time for me to decide to be listed or not, I told this to my then-bf and his response was 'But you have to think, God is the one who gave man the ability to even do transplant. And, in the end He still gets to decide how it goes.' This changed my whole perspective. I got evaluated and listed. Then I maintained for 4 years or so and was inactive on the list.
<br />
<br />Then, I went into the hospital with collapsed lung and from April on, was on O2 all the time and slowly losing the ability to eat, get dressed or even walk to the bathroom. If someone stepped on my O2 tubing, I would literally deflate. I spent that summer losing ability to care for myself at all and going in and out of the hospital. I knew it was time. They had asked me then and I knew I wanted the future I had seen for myself that I hadn't had enough time to complete yet. By the end of summer, I was completely calm and ok with everything. I knew that it was out of my control. I made the choice and was doing what I could to take care of myself and spent all my time with my family that I could. In September, I got bad fast. I had to be put on the vent because of my CO2 getting so high.
<br />
<br />I got life-flighted to my tx center and was in a coma by the time I arrived and woke up the next day with new lungs. I know I am very lucky and blessed that it went so well and happened at all but I will tell you, everyday I look back and remember what it was like to take that first breath off the vent after. Even if that is all I got to experience, it was worth it. It is beautiful. Plus, that was 4 years ago. Technology and knowledge has gotten so much better since then. Scars are less then what they were, medications are better all the time, they are getting better at matching donors to recipients so all these things are going to better your chances. (I am currently in a grad program studying to become an organ procurement coordinator so we are learning all about this stuff.)
<br />
<br />I don't mean to push you either way. It is a very personal choice that you have to make sure is what you want. I am just trying to tell you that I went in fully aware that it is a risk with no guarantees and that it would have work involved to maintain (meds, exercise, lots of docs, etc) but I could have never anticipated how AMAZING it is to be able to breathe no matter how many breaths I get.
 
A

athanasia

New member
I also want to pass on a piece of advise that was given to me by a fellow post-tx friend. If you decide to go for it, for you and anyone else, start walking after surgery as soon as they tell you it is safe. After the vent is out and they have you in your regular room, usually someone will come to your room to get you to walk. Do it no matter how much you may not want to. Walking is the best thing to do after and the sooner, the better. Don't push yourself too hard or anything but a few steps is better than none. It helps tremendously!
 
A

athanasia

New member
I also want to pass on a piece of advise that was given to me by a fellow post-tx friend. If you decide to go for it, for you and anyone else, start walking after surgery as soon as they tell you it is safe. After the vent is out and they have you in your regular room, usually someone will come to your room to get you to walk. Do it no matter how much you may not want to. Walking is the best thing to do after and the sooner, the better. Don't push yourself too hard or anything but a few steps is better than none. It helps tremendously!
 
A

athanasia

New member
I also want to pass on a piece of advise that was given to me by a fellow post-tx friend. If you decide to go for it, for you and anyone else, start walking after surgery as soon as they tell you it is safe. After the vent is out and they have you in your regular room, usually someone will come to your room to get you to walk. Do it no matter how much you may not want to. Walking is the best thing to do after and the sooner, the better. Don't push yourself too hard or anything but a few steps is better than none. It helps tremendously!
 
C

coltsfan715

New member
I agree with what others have said to an extent. Ldude's story is similar to mine, except I had my transplant 4.5 years ago.

Until I turned 23-24 I was firmly against transplant. I had read stories, seen articles and just wasn't convinced it was a good enough option. I swore up and down that I wouldn't get a transplant, it wasn't my thing. Then I started getting really sick. I started struggling with everyday things and really wishing that I had my old life back. At that time I started checking things out for myself. I did a lot of research and that research is actually what led me to this site. Though there wasn't much info on here about it at the time, I came here to get opinions and experiences from people.

For me I took some convincing, but it was similar to Ld's comment. I was looking into it because I wanted my family and friends to feel I had given it the effort to make a good decision - an educated decision - about what I was going to do about my life or possible lack thereof. I asked my docs and I actually hunted for a new doc that would refer me to a center, so I could get my questions answered. I asked several pages worth of questions and took about a month after my first appointment with the transplant center to make up my mind. For me my answer boiled down to one question ... Would I be happy if I only had 6 months after my transplant? I had a old friend ask me that about 3 weeks after my transplant and I had no hesitation in my answer ... I just wanted 1 amazing day. I wanted 1 day where I could laugh without choking and coughing, I could hug my family and not feel like I couldn't breathe. I wanted to swim, run, play with my friends and I wanted to pick up their kids and I wanted my life BACK. I struggled up until that question trying to weigh the pros and cons and the statistics and nothing was doing it for me. It was that question that made my decision.

I called the next week and made my appointments for my evaluation. I have never regretted my decision and have had a wonderful experience since my transplant. I have had 1 case of acute rejection - but it was so minor that it had no affect on my health. I have been sick a few times but made a full recovery each time.

I can understand your hesitations and they are normal. I say yes listen and remember your friends' experiences, BUT look for other good stories too. They are out there and there are a good number of them. Transplantbuddies.org is extremely helpful as well.

Good luck with your decision, it isn't easy but regardless of the decision you make, make the one that is best for YOU. You are the one that has to live with the decision, everyone else just needs to accept it.

Good Luck
Lindsey
 
C

coltsfan715

New member
I agree with what others have said to an extent. Ldude's story is similar to mine, except I had my transplant 4.5 years ago.

Until I turned 23-24 I was firmly against transplant. I had read stories, seen articles and just wasn't convinced it was a good enough option. I swore up and down that I wouldn't get a transplant, it wasn't my thing. Then I started getting really sick. I started struggling with everyday things and really wishing that I had my old life back. At that time I started checking things out for myself. I did a lot of research and that research is actually what led me to this site. Though there wasn't much info on here about it at the time, I came here to get opinions and experiences from people.

For me I took some convincing, but it was similar to Ld's comment. I was looking into it because I wanted my family and friends to feel I had given it the effort to make a good decision - an educated decision - about what I was going to do about my life or possible lack thereof. I asked my docs and I actually hunted for a new doc that would refer me to a center, so I could get my questions answered. I asked several pages worth of questions and took about a month after my first appointment with the transplant center to make up my mind. For me my answer boiled down to one question ... Would I be happy if I only had 6 months after my transplant? I had a old friend ask me that about 3 weeks after my transplant and I had no hesitation in my answer ... I just wanted 1 amazing day. I wanted 1 day where I could laugh without choking and coughing, I could hug my family and not feel like I couldn't breathe. I wanted to swim, run, play with my friends and I wanted to pick up their kids and I wanted my life BACK. I struggled up until that question trying to weigh the pros and cons and the statistics and nothing was doing it for me. It was that question that made my decision.

I called the next week and made my appointments for my evaluation. I have never regretted my decision and have had a wonderful experience since my transplant. I have had 1 case of acute rejection - but it was so minor that it had no affect on my health. I have been sick a few times but made a full recovery each time.

I can understand your hesitations and they are normal. I say yes listen and remember your friends' experiences, BUT look for other good stories too. They are out there and there are a good number of them. Transplantbuddies.org is extremely helpful as well.

Good luck with your decision, it isn't easy but regardless of the decision you make, make the one that is best for YOU. You are the one that has to live with the decision, everyone else just needs to accept it.

Good Luck
Lindsey
 
C

coltsfan715

New member
I agree with what others have said to an extent. Ldude's story is similar to mine, except I had my transplant 4.5 years ago.
<br />
<br />Until I turned 23-24 I was firmly against transplant. I had read stories, seen articles and just wasn't convinced it was a good enough option. I swore up and down that I wouldn't get a transplant, it wasn't my thing. Then I started getting really sick. I started struggling with everyday things and really wishing that I had my old life back. At that time I started checking things out for myself. I did a lot of research and that research is actually what led me to this site. Though there wasn't much info on here about it at the time, I came here to get opinions and experiences from people.
<br />
<br />For me I took some convincing, but it was similar to Ld's comment. I was looking into it because I wanted my family and friends to feel I had given it the effort to make a good decision - an educated decision - about what I was going to do about my life or possible lack thereof. I asked my docs and I actually hunted for a new doc that would refer me to a center, so I could get my questions answered. I asked several pages worth of questions and took about a month after my first appointment with the transplant center to make up my mind. For me my answer boiled down to one question ... Would I be happy if I only had 6 months after my transplant? I had a old friend ask me that about 3 weeks after my transplant and I had no hesitation in my answer ... I just wanted 1 amazing day. I wanted 1 day where I could laugh without choking and coughing, I could hug my family and not feel like I couldn't breathe. I wanted to swim, run, play with my friends and I wanted to pick up their kids and I wanted my life BACK. I struggled up until that question trying to weigh the pros and cons and the statistics and nothing was doing it for me. It was that question that made my decision.
<br />
<br />I called the next week and made my appointments for my evaluation. I have never regretted my decision and have had a wonderful experience since my transplant. I have had 1 case of acute rejection - but it was so minor that it had no affect on my health. I have been sick a few times but made a full recovery each time.
<br />
<br />I can understand your hesitations and they are normal. I say yes listen and remember your friends' experiences, BUT look for other good stories too. They are out there and there are a good number of them. Transplantbuddies.org is extremely helpful as well.
<br />
<br />Good luck with your decision, it isn't easy but regardless of the decision you make, make the one that is best for YOU. You are the one that has to live with the decision, everyone else just needs to accept it.
<br />
<br />Good Luck
<br />Lindsey
 
C

cpubanz

New member
<br>I to am considering transplant. I assume you are form GA(based on your user). Not sure how this site works other than responding here. Would like to chat with you about what you are thinking and where I am as well. You can hit me up on facebook if you would like. just send me a message and friend me at <a href="http://www.facebook.com/cpubanz">http://www.facebook.com/cpubanz</a> ..
 
C

cpubanz

New member
<br>I to am considering transplant. I assume you are form GA(based on your user). Not sure how this site works other than responding here. Would like to chat with you about what you are thinking and where I am as well. You can hit me up on facebook if you would like. just send me a message and friend me at <a href="http://www.facebook.com/cpubanz">http://www.facebook.com/cpubanz</a>..
 
C

cpubanz

New member
<br>I to am considering transplant. I assume you are form GA(based on your user). Not sure how this site works other than responding here. Would like to chat with you about what you are thinking and where I am as well. You can hit me up on facebook if you would like. just send me a message and friend me at <a href="http://www.facebook.com/cpubanz">http://www.facebook.com/cpubanz</a>..
 
beautifulsoul

beautifulsoul

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

There was never a question for me. As has been said previously- it comes down to a very simple question. do you want to live?

I did. </end quote></div>

<div><br></div><div>I agree with what Pat says 100% </div><div><br></div><div>I also agree with what Lindsey has said. I had high hopes that I would be able to enjoy the simple things again. Like, walking across the room without getting extremely out of breath and no oxygen attached to me. Dancing, hanging out with friends or even going to school.</div><div><br></div><div>However, I was only 13 years old at the time (15 by the time I received the transplant) so the overall decision was NOT mine since I was under 18. Ultimately, my parents decided for me. I didn't have much of my own opinion which, brings me back to the point...."Do you want to live?" I often become confused when people ask me "How did you make a decision?" There is no other choice. It's basically a matter of life or death. With that being said, I always let my parents know how thankful I am for everything they've done for me. I wouldn't be here if it wasn't for them. I'm glad they didn't give up on me. I can honestly say at the young age of 13 I would have given up.</div><div><br></div><div>I am now four and a half years post transplant and doing well. I came across a few problems with in the first year of transplant (Which is usual, the first year is the riskiest) They were easily fixed with no major issues. With my own personal experience, I would say the <font class="Apple-style-span" face="'comic sans ms'">emotional</font> toll it takes is the hardest part. To me, it was worth it. Four and a half years later...I still can't believe it's reality. I can dance and I can breathe. I can laugh and I can finally LIVE. I'm loving every minute of my life. Everything that I have experienced has made me the person I am today.</div><div><br></div><div>Another success story for you <img src="i/expressions/face-icon-small-smile.gif" border="0"></div><div><br></div><div>HUGS TO YOU</div>
 
beautifulsoul

beautifulsoul

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

There was never a question for me. As has been said previously- it comes down to a very simple question. do you want to live?

I did. </end quote>

<br>I agree with what Pat says 100%<br>I also agree with what Lindsey has said. I had high hopes that I would be able to enjoy the simple things again. Like, walking across the room without getting extremely out of breath and no oxygen attached to me. Dancing, hanging out with friends or even going to school.<br>However, I was only 13 years old at the time (15 by the time I received the transplant) so the overall decision was NOT mine since I was under 18. Ultimately, my parents decided for me. I didn't have much of my own opinion which, brings me back to the point...."Do you want to live?" I often become confused when people ask me "How did you make a decision?" There is no other choice. It's basically a matter of life or death. With that being said, I always let my parents know how thankful I am for everything they've done for me. I wouldn't be here if it wasn't for them. I'm glad they didn't give up on me. I can honestly say at the young age of 13 I would have given up.<br>I am now four and a half years post transplant and doing well. I came across a few problems with in the first year of transplant (Which is usual, the first year is the riskiest) They were easily fixed with no major issues. With my own personal experience, I would say the <font class="Apple-style-span" face="'comic sans ms'">emotional</font> toll it takes is the hardest part. To me, it was worth it. Four and a half years later...I still can't believe it's reality. I can dance and I can breathe. I can laugh and I can finally LIVE. I'm loving every minute of my life. Everything that I have experienced has made me the person I am today.<br>Another success story for you <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>HUGS TO YOU
 
beautifulsoul

beautifulsoul

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

There was never a question for me. As has been said previously- it comes down to a very simple question. do you want to live?

I did. </end quote>

<br>I agree with what Pat says 100%<br>I also agree with what Lindsey has said. I had high hopes that I would be able to enjoy the simple things again. Like, walking across the room without getting extremely out of breath and no oxygen attached to me. Dancing, hanging out with friends or even going to school.<br>However, I was only 13 years old at the time (15 by the time I received the transplant) so the overall decision was NOT mine since I was under 18. Ultimately, my parents decided for me. I didn't have much of my own opinion which, brings me back to the point...."Do you want to live?" I often become confused when people ask me "How did you make a decision?" There is no other choice. It's basically a matter of life or death. With that being said, I always let my parents know how thankful I am for everything they've done for me. I wouldn't be here if it wasn't for them. I'm glad they didn't give up on me. I can honestly say at the young age of 13 I would have given up.<br>I am now four and a half years post transplant and doing well. I came across a few problems with in the first year of transplant (Which is usual, the first year is the riskiest) They were easily fixed with no major issues. With my own personal experience, I would say the <font class="Apple-style-span" face="'comic sans ms'">emotional</font> toll it takes is the hardest part. To me, it was worth it. Four and a half years later...I still can't believe it's reality. I can dance and I can breathe. I can laugh and I can finally LIVE. I'm loving every minute of my life. Everything that I have experienced has made me the person I am today.<br>Another success story for you <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>HUGS TO YOU
 
A

azdesertrat

New member
Amber, you're the best...
I wanted to add that I too was at death's door when I was tranplanted.
My FEV was around 13% & I was unable to do the most basic of life's demands.
My Wife had to take off work & stay home with me 'cuz I couldn't take care of myself; she literally had to help me to the bathroom. Taking a shower was an ordeal. I was homebound.
My world was limited to the TV & computer & that was only if I felt well enough to go out the the living room.
Now I can take care of myself. I go ride my quad out in the boonies.
I travel to ID. every winter to enjoy the company of my family.
Not only do I travel, I do it BY MYSELF! I'm the type that I have to be independent & now I have that independence back.
No, my TX wasn't 100% but it WAS good enough to provide me tremendous quality of life.
I look at it thusly; God gave man the technology to extend & better my life.
I am grateful to Him every day for doing so.
 
A

azdesertrat

New member
Amber, you're the best...
I wanted to add that I too was at death's door when I was tranplanted.
My FEV was around 13% & I was unable to do the most basic of life's demands.
My Wife had to take off work & stay home with me 'cuz I couldn't take care of myself; she literally had to help me to the bathroom. Taking a shower was an ordeal. I was homebound.
My world was limited to the TV & computer & that was only if I felt well enough to go out the the living room.
Now I can take care of myself. I go ride my quad out in the boonies.
I travel to ID. every winter to enjoy the company of my family.
Not only do I travel, I do it BY MYSELF! I'm the type that I have to be independent & now I have that independence back.
No, my TX wasn't 100% but it WAS good enough to provide me tremendous quality of life.
I look at it thusly; God gave man the technology to extend & better my life.
I am grateful to Him every day for doing so.
 
A

azdesertrat

New member
Amber, you're the best...
<br />I wanted to add that I too was at death's door when I was tranplanted.
<br />My FEV was around 13% & I was unable to do the most basic of life's demands.
<br />My Wife had to take off work & stay home with me 'cuz I couldn't take care of myself; she literally had to help me to the bathroom. Taking a shower was an ordeal. I was homebound.
<br />My world was limited to the TV & computer & that was only if I felt well enough to go out the the living room.
<br />Now I can take care of myself. I go ride my quad out in the boonies.
<br />I travel to ID. every winter to enjoy the company of my family.
<br />Not only do I travel, I do it BY MYSELF! I'm the type that I have to be independent & now I have that independence back.
<br />No, my TX wasn't 100% but it WAS good enough to provide me tremendous quality of life.
<br />I look at it thusly; God gave man the technology to extend & better my life.
<br />I am grateful to Him every day for doing so.
 
G

Georgiagirl

New member
Hello everyone, <br>I have found all of your input very helpful and interesting.  I am not saying that I am ruling a transplant out completely, I am just leaning to the side of "no" more than "yes". Thank you to everyone's responses.  As far as my health, I am more moderate than any other "category".  Currently, my fev1 is between 35-40 and my fvc is between 40-45 (my goal is 50 but my highest was 49).  I have not required oxygen at night for about 20 years, but find that I have more asthmatic symptoms as I get older that are more so than anything from the CF. I appreciate all of your responses and hope the best for each of you.<br>
 
You must log in or register to reply here.
Top