Need some advice from Lung Transplant Recipients

C

coltsfan715

New member
Why not ask if you can be listed inactively for right now? Tell them you just need some time to process everything before being actively listed.

I was listed when I was around 29% lung function. Mentally I was NOT ready when I was listed but luckily by the time I was called I was. I waited 6 weeks and in that 6 weeks I dropped from 29% lung function to roughly 21-22% lung function and I had felt "okay" and been sick relatively few times in comparison to the past.

I think inactive listing would be good for you right now because it would show you do want it but that you are wanting to take some time to get your head in the right place and get yourself "ready" (if that is even possible) for the transplant.

Also I will say something that my transplant doc told me at my first appointment. Base your decision on how you think you may feel in 2 years based on how you have felt in the last 6 months. When I thought about it that way my honest answer was ... I will be dead in 2 years if I go by how I feel now and have felt in prior months (prior to my being listed). Due to that I decided to be evaluated and listed that and quite honestly I just wanted to get it over with.

Whatever decision you make I wish nothing but the best for you!

Love Lindsey
 
C

coltsfan715

New member
Why not ask if you can be listed inactively for right now? Tell them you just need some time to process everything before being actively listed.

I was listed when I was around 29% lung function. Mentally I was NOT ready when I was listed but luckily by the time I was called I was. I waited 6 weeks and in that 6 weeks I dropped from 29% lung function to roughly 21-22% lung function and I had felt "okay" and been sick relatively few times in comparison to the past.

I think inactive listing would be good for you right now because it would show you do want it but that you are wanting to take some time to get your head in the right place and get yourself "ready" (if that is even possible) for the transplant.

Also I will say something that my transplant doc told me at my first appointment. Base your decision on how you think you may feel in 2 years based on how you have felt in the last 6 months. When I thought about it that way my honest answer was ... I will be dead in 2 years if I go by how I feel now and have felt in prior months (prior to my being listed). Due to that I decided to be evaluated and listed that and quite honestly I just wanted to get it over with.

Whatever decision you make I wish nothing but the best for you!

Love Lindsey
 
C

coltsfan715

New member
Why not ask if you can be listed inactively for right now? Tell them you just need some time to process everything before being actively listed.

I was listed when I was around 29% lung function. Mentally I was NOT ready when I was listed but luckily by the time I was called I was. I waited 6 weeks and in that 6 weeks I dropped from 29% lung function to roughly 21-22% lung function and I had felt "okay" and been sick relatively few times in comparison to the past.

I think inactive listing would be good for you right now because it would show you do want it but that you are wanting to take some time to get your head in the right place and get yourself "ready" (if that is even possible) for the transplant.

Also I will say something that my transplant doc told me at my first appointment. Base your decision on how you think you may feel in 2 years based on how you have felt in the last 6 months. When I thought about it that way my honest answer was ... I will be dead in 2 years if I go by how I feel now and have felt in prior months (prior to my being listed). Due to that I decided to be evaluated and listed that and quite honestly I just wanted to get it over with.

Whatever decision you make I wish nothing but the best for you!

Love Lindsey
 
C

coltsfan715

New member
Why not ask if you can be listed inactively for right now? Tell them you just need some time to process everything before being actively listed.

I was listed when I was around 29% lung function. Mentally I was NOT ready when I was listed but luckily by the time I was called I was. I waited 6 weeks and in that 6 weeks I dropped from 29% lung function to roughly 21-22% lung function and I had felt "okay" and been sick relatively few times in comparison to the past.

I think inactive listing would be good for you right now because it would show you do want it but that you are wanting to take some time to get your head in the right place and get yourself "ready" (if that is even possible) for the transplant.

Also I will say something that my transplant doc told me at my first appointment. Base your decision on how you think you may feel in 2 years based on how you have felt in the last 6 months. When I thought about it that way my honest answer was ... I will be dead in 2 years if I go by how I feel now and have felt in prior months (prior to my being listed). Due to that I decided to be evaluated and listed that and quite honestly I just wanted to get it over with.

Whatever decision you make I wish nothing but the best for you!

Love Lindsey
 
C

coltsfan715

New member
Why not ask if you can be listed inactively for right now? Tell them you just need some time to process everything before being actively listed.
<br />
<br />I was listed when I was around 29% lung function. Mentally I was NOT ready when I was listed but luckily by the time I was called I was. I waited 6 weeks and in that 6 weeks I dropped from 29% lung function to roughly 21-22% lung function and I had felt "okay" and been sick relatively few times in comparison to the past.
<br />
<br />I think inactive listing would be good for you right now because it would show you do want it but that you are wanting to take some time to get your head in the right place and get yourself "ready" (if that is even possible) for the transplant.
<br />
<br />Also I will say something that my transplant doc told me at my first appointment. Base your decision on how you think you may feel in 2 years based on how you have felt in the last 6 months. When I thought about it that way my honest answer was ... I will be dead in 2 years if I go by how I feel now and have felt in prior months (prior to my being listed). Due to that I decided to be evaluated and listed that and quite honestly I just wanted to get it over with.
<br />
<br />Whatever decision you make I wish nothing but the best for you!
<br />
<br />Love Lindsey
 
G

gsplover

New member
Hi Bob,

I am going through almost the same thing. My lung functions are 38%. I was going to wait to be evaluated but after taking with my doctor he thinks I should go be ealuated and stay inactive until I feel I need to be active. I have lost about 25% of my lung function in the past year so my doctor do not want me to wait to be evaluated. The good part is I can be inactive until I feel I need lungs. Right now I am using oxygen with any activity but not at rest.

Best of LucK to you!
 
G

gsplover

New member
Hi Bob,

I am going through almost the same thing. My lung functions are 38%. I was going to wait to be evaluated but after taking with my doctor he thinks I should go be ealuated and stay inactive until I feel I need to be active. I have lost about 25% of my lung function in the past year so my doctor do not want me to wait to be evaluated. The good part is I can be inactive until I feel I need lungs. Right now I am using oxygen with any activity but not at rest.

Best of LucK to you!
 
G

gsplover

New member
Hi Bob,

I am going through almost the same thing. My lung functions are 38%. I was going to wait to be evaluated but after taking with my doctor he thinks I should go be ealuated and stay inactive until I feel I need to be active. I have lost about 25% of my lung function in the past year so my doctor do not want me to wait to be evaluated. The good part is I can be inactive until I feel I need lungs. Right now I am using oxygen with any activity but not at rest.

Best of LucK to you!
 
G

gsplover

New member
Hi Bob,

I am going through almost the same thing. My lung functions are 38%. I was going to wait to be evaluated but after taking with my doctor he thinks I should go be ealuated and stay inactive until I feel I need to be active. I have lost about 25% of my lung function in the past year so my doctor do not want me to wait to be evaluated. The good part is I can be inactive until I feel I need lungs. Right now I am using oxygen with any activity but not at rest.

Best of LucK to you!
 
G

gsplover

New member
Hi Bob,
<br />
<br />I am going through almost the same thing. My lung functions are 38%. I was going to wait to be evaluated but after taking with my doctor he thinks I should go be ealuated and stay inactive until I feel I need to be active. I have lost about 25% of my lung function in the past year so my doctor do not want me to wait to be evaluated. The good part is I can be inactive until I feel I need lungs. Right now I am using oxygen with any activity but not at rest.
<br />
<br />Best of LucK to you!
 
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