When To Get Evaluated, Answer: When your Doctor suggests it's time!!!!

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pbpc95

Guest
I don't post much, but I'm going to try to change that and sorry for such a long post.

Have To Share This Info: I'm Listed For Lungs As Of 4/29/10

When I first started considering transplant I was very skeptical about it. I was being vain, scared, and didn't want to be hassled with more doctor visits and inconvenience. Well, for the past four months I have been on a whirlwind of being in the hospital on an average of every month, sometimes only making it two weeks before being put back on iv meds for a month long stretch each time. In between being sick and seeing my local doctor, I've had to go to the transplant center to have tests and more tests done trying to meet the requirements for being a transplant candidate. I finally made it after running into a few speed bumps like needing to gain weight issues, insurance issues, and a few other minor setbacks. Now I'm just waiting for my call to get my life back. I tell you that to tell you this.

If your lung function falls and your doctor suggests that it is time to start considering being evaluated for transplant, DON'T WAIT! Please don't put it off. I was ready to be evaluated two years ago. Thinking back now, I could have been listed four months ago when I was getting the whole process started because I would have it all done already. It was even more difficult being sick on top of all the traveling and testing.

As far as worrying about the side affects of the steroids or the way your body is going to look after the scars heal, all I can say is I know exactly what you are thinking. I was thinking the same way until I've gotten to the point that I can barely get dressed somedays without sitting on the edge of the bed until I can get my breath back. I have always had pride in my looks, you know hair, makeup. I would not leave my house without my hair and face done. Nowdays, I'm lucky if I put a little foundation on my face and some lipstick on. I wash and fix my hair the night before when I know I'm going somewhere because I don't want to burn too much energy doing too many things at once. I'm on O2 24/7. It is never off of my face, even when I shower. This isn't living people. This is existing without a life. I miss being active and independent. I am looking forward to that phone call because I know it will be the beginning of my new life. Please pray that I won't have to wait long.


Sorry this post was so long, I just wanted you all to understand it's ok to have the negative thoughts. Just get over them and get listed before your health gets as bad as mine. Hindsight is 20/20. Listen to me and I'll be your hindsight. Be Healthy and Just Breathe!!
 
P

pbpc95

Guest
I don't post much, but I'm going to try to change that and sorry for such a long post.

Have To Share This Info: I'm Listed For Lungs As Of 4/29/10

When I first started considering transplant I was very skeptical about it. I was being vain, scared, and didn't want to be hassled with more doctor visits and inconvenience. Well, for the past four months I have been on a whirlwind of being in the hospital on an average of every month, sometimes only making it two weeks before being put back on iv meds for a month long stretch each time. In between being sick and seeing my local doctor, I've had to go to the transplant center to have tests and more tests done trying to meet the requirements for being a transplant candidate. I finally made it after running into a few speed bumps like needing to gain weight issues, insurance issues, and a few other minor setbacks. Now I'm just waiting for my call to get my life back. I tell you that to tell you this.

If your lung function falls and your doctor suggests that it is time to start considering being evaluated for transplant, DON'T WAIT! Please don't put it off. I was ready to be evaluated two years ago. Thinking back now, I could have been listed four months ago when I was getting the whole process started because I would have it all done already. It was even more difficult being sick on top of all the traveling and testing.

As far as worrying about the side affects of the steroids or the way your body is going to look after the scars heal, all I can say is I know exactly what you are thinking. I was thinking the same way until I've gotten to the point that I can barely get dressed somedays without sitting on the edge of the bed until I can get my breath back. I have always had pride in my looks, you know hair, makeup. I would not leave my house without my hair and face done. Nowdays, I'm lucky if I put a little foundation on my face and some lipstick on. I wash and fix my hair the night before when I know I'm going somewhere because I don't want to burn too much energy doing too many things at once. I'm on O2 24/7. It is never off of my face, even when I shower. This isn't living people. This is existing without a life. I miss being active and independent. I am looking forward to that phone call because I know it will be the beginning of my new life. Please pray that I won't have to wait long.


Sorry this post was so long, I just wanted you all to understand it's ok to have the negative thoughts. Just get over them and get listed before your health gets as bad as mine. Hindsight is 20/20. Listen to me and I'll be your hindsight. Be Healthy and Just Breathe!!
 
P

pbpc95

Guest
I don't post much, but I'm going to try to change that and sorry for such a long post.
<br />
<br />Have To Share This Info: I'm Listed For Lungs As Of 4/29/10
<br />
<br />When I first started considering transplant I was very skeptical about it. I was being vain, scared, and didn't want to be hassled with more doctor visits and inconvenience. Well, for the past four months I have been on a whirlwind of being in the hospital on an average of every month, sometimes only making it two weeks before being put back on iv meds for a month long stretch each time. In between being sick and seeing my local doctor, I've had to go to the transplant center to have tests and more tests done trying to meet the requirements for being a transplant candidate. I finally made it after running into a few speed bumps like needing to gain weight issues, insurance issues, and a few other minor setbacks. Now I'm just waiting for my call to get my life back. I tell you that to tell you this.
<br />
<br />If your lung function falls and your doctor suggests that it is time to start considering being evaluated for transplant, DON'T WAIT! Please don't put it off. I was ready to be evaluated two years ago. Thinking back now, I could have been listed four months ago when I was getting the whole process started because I would have it all done already. It was even more difficult being sick on top of all the traveling and testing.
<br />
<br />As far as worrying about the side affects of the steroids or the way your body is going to look after the scars heal, all I can say is I know exactly what you are thinking. I was thinking the same way until I've gotten to the point that I can barely get dressed somedays without sitting on the edge of the bed until I can get my breath back. I have always had pride in my looks, you know hair, makeup. I would not leave my house without my hair and face done. Nowdays, I'm lucky if I put a little foundation on my face and some lipstick on. I wash and fix my hair the night before when I know I'm going somewhere because I don't want to burn too much energy doing too many things at once. I'm on O2 24/7. It is never off of my face, even when I shower. This isn't living people. This is existing without a life. I miss being active and independent. I am looking forward to that phone call because I know it will be the beginning of my new life. Please pray that I won't have to wait long.
<br />
<br />
<br />Sorry this post was so long, I just wanted you all to understand it's ok to have the negative thoughts. Just get over them and get listed before your health gets as bad as mine. Hindsight is 20/20. Listen to me and I'll be your hindsight. Be Healthy and Just Breathe!!
 
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Lex

New member
Congratulations on getting listed.

Some people feel that they want to get "as much life" out of their CF lungs. I used to think that way, too. I thought, well, the new lungs have a life expectancy and the longer I wait, the longer I'll survive post TX.

Looking back, I was ill informed and I suffered a long time because of it. My new lungs will last 50 years. I'll probably die from sky diving, bungee jumping, a bus, climbing mount everest, swimming with sharks, a random drive by, a mafia hit, or some other wacky way. Not from my new lungs.
 
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Lex

New member
Congratulations on getting listed.

Some people feel that they want to get "as much life" out of their CF lungs. I used to think that way, too. I thought, well, the new lungs have a life expectancy and the longer I wait, the longer I'll survive post TX.

Looking back, I was ill informed and I suffered a long time because of it. My new lungs will last 50 years. I'll probably die from sky diving, bungee jumping, a bus, climbing mount everest, swimming with sharks, a random drive by, a mafia hit, or some other wacky way. Not from my new lungs.
 
L

Lex

New member
Congratulations on getting listed.
<br />
<br />Some people feel that they want to get "as much life" out of their CF lungs. I used to think that way, too. I thought, well, the new lungs have a life expectancy and the longer I wait, the longer I'll survive post TX.
<br />
<br />Looking back, I was ill informed and I suffered a long time because of it. My new lungs will last 50 years. I'll probably die from sky diving, bungee jumping, a bus, climbing mount everest, swimming with sharks, a random drive by, a mafia hit, or some other wacky way. Not from my new lungs.
 
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Tumbleweed

New member
just wanted to say that i totally agree. i had the same thought process. waiting too long is dangerous, and prolongs suffering. it's just not worth it
 
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Tumbleweed

New member
just wanted to say that i totally agree. i had the same thought process. waiting too long is dangerous, and prolongs suffering. it's just not worth it
 
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Tumbleweed

New member
just wanted to say that i totally agree. i had the same thought process. waiting too long is dangerous, and prolongs suffering. it's just not worth it
 
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coltsfan715

New member
I don't necessarily think that you should wait until your doc brings it up but that is just me. I asked about transplant well before I needed one because I wanted to know when it would be suggested so I wasn't caught off guard. I am glad that I asked because my doc NEVER brought it up to me. I suggested transplant and my doc said no, I went to 3 docs before I found one that was willing to refer me to a transplant center. When I finally found one I stuck with him and by the time I got to the center was going downhill fast. I was evaluated and listed and waited a total of 6 weeks for my transplant.

I think that YES you are right If your doc brings it up listen to them. I think many people think that if you are evaluated and listed then you are committed to going whenever they call you, which is not true. I have known plenty of people just at my center that were evaluated and listed but were able to go inactive or asked to go inactive for a short while so they could mentally prepare.

I also think that it is good for every CFer to know when the time is approaching by asking before it is needed. I asked and was told okay - your FEV1 will be roughly this% and your oxygen will drop, you may have more frequent hospital stays and so on. I was ready and because I was aware I was able to look out for myself. Had I stuck with my original adult pulmonologist I would have died in his care and would never have gotten a chance at a transplant, but because I KNEW the time was coming I was able to do something about it.

So I think it is a combination of both.

Lindsey
 
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coltsfan715

New member
I don't necessarily think that you should wait until your doc brings it up but that is just me. I asked about transplant well before I needed one because I wanted to know when it would be suggested so I wasn't caught off guard. I am glad that I asked because my doc NEVER brought it up to me. I suggested transplant and my doc said no, I went to 3 docs before I found one that was willing to refer me to a transplant center. When I finally found one I stuck with him and by the time I got to the center was going downhill fast. I was evaluated and listed and waited a total of 6 weeks for my transplant.

I think that YES you are right If your doc brings it up listen to them. I think many people think that if you are evaluated and listed then you are committed to going whenever they call you, which is not true. I have known plenty of people just at my center that were evaluated and listed but were able to go inactive or asked to go inactive for a short while so they could mentally prepare.

I also think that it is good for every CFer to know when the time is approaching by asking before it is needed. I asked and was told okay - your FEV1 will be roughly this% and your oxygen will drop, you may have more frequent hospital stays and so on. I was ready and because I was aware I was able to look out for myself. Had I stuck with my original adult pulmonologist I would have died in his care and would never have gotten a chance at a transplant, but because I KNEW the time was coming I was able to do something about it.

So I think it is a combination of both.

Lindsey
 
C

coltsfan715

New member
I don't necessarily think that you should wait until your doc brings it up but that is just me. I asked about transplant well before I needed one because I wanted to know when it would be suggested so I wasn't caught off guard. I am glad that I asked because my doc NEVER brought it up to me. I suggested transplant and my doc said no, I went to 3 docs before I found one that was willing to refer me to a transplant center. When I finally found one I stuck with him and by the time I got to the center was going downhill fast. I was evaluated and listed and waited a total of 6 weeks for my transplant.
<br />
<br />I think that YES you are right If your doc brings it up listen to them. I think many people think that if you are evaluated and listed then you are committed to going whenever they call you, which is not true. I have known plenty of people just at my center that were evaluated and listed but were able to go inactive or asked to go inactive for a short while so they could mentally prepare.
<br />
<br />I also think that it is good for every CFer to know when the time is approaching by asking before it is needed. I asked and was told okay - your FEV1 will be roughly this% and your oxygen will drop, you may have more frequent hospital stays and so on. I was ready and because I was aware I was able to look out for myself. Had I stuck with my original adult pulmonologist I would have died in his care and would never have gotten a chance at a transplant, but because I KNEW the time was coming I was able to do something about it.
<br />
<br />So I think it is a combination of both.
<br />
<br />Lindsey
 
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Lex

New member
I agree Lindsey....I'd like to add that it's nice to have some "wait" time once you're listed, not only to prepare mentally, but financially. I am a total planner...and I needed time to get stuff together. Though, too much time sucks, too.
 
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Lex

New member
I agree Lindsey....I'd like to add that it's nice to have some "wait" time once you're listed, not only to prepare mentally, but financially. I am a total planner...and I needed time to get stuff together. Though, too much time sucks, too.
 
L

Lex

New member
I agree Lindsey....I'd like to add that it's nice to have some "wait" time once you're listed, not only to prepare mentally, but financially. I am a total planner...and I needed time to get stuff together. Though, too much time sucks, too.
 
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tleigh

New member
Congrats on getting listed. Praying that your transplant goes smoothly.

Thanks also for sharing your hindsight with us (ok that sounds kinda funny-but you know what I mean). As someone who is beginning to wonder about these things-I really appreciate your honesty and transparency.
 
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tleigh

New member
Congrats on getting listed. Praying that your transplant goes smoothly.

Thanks also for sharing your hindsight with us (ok that sounds kinda funny-but you know what I mean). As someone who is beginning to wonder about these things-I really appreciate your honesty and transparency.
 
T

tleigh

New member
Congrats on getting listed. Praying that your transplant goes smoothly.
<br />
<br />Thanks also for sharing your hindsight with us (ok that sounds kinda funny-but you know what I mean). As someone who is beginning to wonder about these things-I really appreciate your honesty and transparency.
 
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