Significant decline after evaluation...

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TemptressOfTheSea

New member
I completed the evaluation process around the middle of April. Since then, however, I've dealt with pretty bad pneumonia twice, and my body/lungs took a huge hit.

I guess my question is...will the transplant team (or UNOS?) take this into consideration when figuring out my LAS?

I'm fearful of them using those evaluation results, making my score much lower than it should be.
 
T

TemptressOfTheSea

New member
I completed the evaluation process around the middle of April. Since then, however, I've dealt with pretty bad pneumonia twice, and my body/lungs took a huge hit.

I guess my question is...will the transplant team (or UNOS?) take this into consideration when figuring out my LAS?

I'm fearful of them using those evaluation results, making my score much lower than it should be.
 
T

TemptressOfTheSea

New member
I completed the evaluation process around the middle of April. Since then, however, I've dealt with pretty bad pneumonia twice, and my body/lungs took a huge hit.
<br />
<br />I guess my question is...will the transplant team (or UNOS?) take this into consideration when figuring out my LAS?
<br />
<br />I'm fearful of them using those evaluation results, making my score much lower than it should be.
 
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PinkPigg

New member
Hey Haley. That sucks about the pneumonias and decline. If I were you I'd contact my transplant team and update them on what's going on with you. That way they can get updated PFTs or whatever they might want to update your LAS. At least that's my understanding of how things should work when you're post evaluation.

Of course I'm not scheduled for my evaluation until August so others may want to chime in if they can elaborate further. I always say it's better to overcommunicate than undercommunicate.

Hugs,
Steph
 
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PinkPigg

New member
Hey Haley. That sucks about the pneumonias and decline. If I were you I'd contact my transplant team and update them on what's going on with you. That way they can get updated PFTs or whatever they might want to update your LAS. At least that's my understanding of how things should work when you're post evaluation.

Of course I'm not scheduled for my evaluation until August so others may want to chime in if they can elaborate further. I always say it's better to overcommunicate than undercommunicate.

Hugs,
Steph
 
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PinkPigg

New member
Hey Haley. That sucks about the pneumonias and decline. If I were you I'd contact my transplant team and update them on what's going on with you. That way they can get updated PFTs or whatever they might want to update your LAS. At least that's my understanding of how things should work when you're post evaluation.
<br />
<br />Of course I'm not scheduled for my evaluation until August so others may want to chime in if they can elaborate further. I always say it's better to overcommunicate than undercommunicate.
<br />
<br />Hugs,
<br />Steph
 
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TemptressOfTheSea

New member
All very good points Steph! I might call my tx center's nurse-coordinator and apprise her of the situation and see if I can't blow a quick PFT prior to my appointment.

I actually remembered that I bought, but had yet to use, a little peak flow/FEV1 meter. So what have I been doing? Mini home PFT's, and they are definitely down, by alot. 27% down to about 20%. I think this is a significant enough change to warrant bringing it up to the team.
 
T

TemptressOfTheSea

New member
All very good points Steph! I might call my tx center's nurse-coordinator and apprise her of the situation and see if I can't blow a quick PFT prior to my appointment.

I actually remembered that I bought, but had yet to use, a little peak flow/FEV1 meter. So what have I been doing? Mini home PFT's, and they are definitely down, by alot. 27% down to about 20%. I think this is a significant enough change to warrant bringing it up to the team.
 
T

TemptressOfTheSea

New member
All very good points Steph! I might call my tx center's nurse-coordinator and apprise her of the situation and see if I can't blow a quick PFT prior to my appointment.
<br />
<br />I actually remembered that I bought, but had yet to use, a little peak flow/FEV1 meter. So what have I been doing? Mini home PFT's, and they are definitely down, by alot. 27% down to about 20%. I think this is a significant enough change to warrant bringing it up to the team.
 
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PinkPigg

New member
Hey Haley. Very cool on keeping the PFTs. Hope you have a good appointment. Stay strong my dear.
<br />
<br />Peace,
<br />Steph
 
C

coltsfan715

New member
Haley,

I definitely second what was already said about calling your transplant team and letting them know what is going on. I was told by my team to keep them posted on everything, so I did. I got sick and was admitted to the hospital and called to tell them I was admitted, had pnuemonia and what my PFTs were when they admitted me - then called when I was sent home on home IVs and such. I ended up being called while I was still on IVs that first time. I don't know if it increased my LAS but it couldn't have hurt, right.

I also had a drop in my PFTs similar to yours. I was evaled at 29% FEV1 was admitted to the hospital at 18% and after 3 weeks of IVs was only at 22%. I was set to finish IVs the day after I had my transplant.

Either way - make them aware of any changes is what I would do.

Lindsey
 
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coltsfan715

New member
Haley,

I definitely second what was already said about calling your transplant team and letting them know what is going on. I was told by my team to keep them posted on everything, so I did. I got sick and was admitted to the hospital and called to tell them I was admitted, had pnuemonia and what my PFTs were when they admitted me - then called when I was sent home on home IVs and such. I ended up being called while I was still on IVs that first time. I don't know if it increased my LAS but it couldn't have hurt, right.

I also had a drop in my PFTs similar to yours. I was evaled at 29% FEV1 was admitted to the hospital at 18% and after 3 weeks of IVs was only at 22%. I was set to finish IVs the day after I had my transplant.

Either way - make them aware of any changes is what I would do.

Lindsey
 
C

coltsfan715

New member
Haley,
<br />
<br />I definitely second what was already said about calling your transplant team and letting them know what is going on. I was told by my team to keep them posted on everything, so I did. I got sick and was admitted to the hospital and called to tell them I was admitted, had pnuemonia and what my PFTs were when they admitted me - then called when I was sent home on home IVs and such. I ended up being called while I was still on IVs that first time. I don't know if it increased my LAS but it couldn't have hurt, right.
<br />
<br />I also had a drop in my PFTs similar to yours. I was evaled at 29% FEV1 was admitted to the hospital at 18% and after 3 weeks of IVs was only at 22%. I was set to finish IVs the day after I had my transplant.
<br />
<br />Either way - make them aware of any changes is what I would do.
<br />
<br />Lindsey
 
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