At what point do dr's start talking tx?

CaliSally

New member
I'm sure there are many variables, but are there any guidelines in layman's terms or a website?
What do they look at to determin? O2 sats, amount or type of infections, number of hospitalizations, fev1 or other pft numbers....???
 

CaliSally

New member
I'm sure there are many variables, but are there any guidelines in layman's terms or a website?
What do they look at to determin? O2 sats, amount or type of infections, number of hospitalizations, fev1 or other pft numbers....???
 

CaliSally

New member
I'm sure there are many variables, but are there any guidelines in layman's terms or a website?
What do they look at to determin? O2 sats, amount or type of infections, number of hospitalizations, fev1 or other pft numbers....???
 

CaliSally

New member
I'm sure there are many variables, but are there any guidelines in layman's terms or a website?
What do they look at to determin? O2 sats, amount or type of infections, number of hospitalizations, fev1 or other pft numbers....???
 

CaliSally

New member
I'm sure there are many variables, but are there any guidelines in layman's terms or a website?
What do they look at to determin? O2 sats, amount or type of infections, number of hospitalizations, fev1 or other pft numbers....???
 

Skye

New member
There are many many variables that go into making a final decision for a tx as everyone is so different. I am not a doc, but some of the criteria I am familiar with are: FEV1 less than 30%, pan resistant meaning resistant to many antibiotics, O2 dependency, heart health and the presence of pulmonary hypertension, arterial blood gas levels. These are only a few. They tend to like CF patients getting connected with a center at a "wellness stage" so they are not too sick to go through the process and they can be less stressed about the whole thing. As you know, when you are not feeling well and battling, that is a hard time to have to connect with a tx center. So, you can be referred well in advance of actually needing a transplant if your CF center is "good at the timing". That being said, you also don't want to connect too early when things are going fine and your numbers are stable since it is such a big step and some of those centers are very busy. Hope this helps.
 

Skye

New member
There are many many variables that go into making a final decision for a tx as everyone is so different. I am not a doc, but some of the criteria I am familiar with are: FEV1 less than 30%, pan resistant meaning resistant to many antibiotics, O2 dependency, heart health and the presence of pulmonary hypertension, arterial blood gas levels. These are only a few. They tend to like CF patients getting connected with a center at a "wellness stage" so they are not too sick to go through the process and they can be less stressed about the whole thing. As you know, when you are not feeling well and battling, that is a hard time to have to connect with a tx center. So, you can be referred well in advance of actually needing a transplant if your CF center is "good at the timing". That being said, you also don't want to connect too early when things are going fine and your numbers are stable since it is such a big step and some of those centers are very busy. Hope this helps.
 

Skye

New member
There are many many variables that go into making a final decision for a tx as everyone is so different. I am not a doc, but some of the criteria I am familiar with are: FEV1 less than 30%, pan resistant meaning resistant to many antibiotics, O2 dependency, heart health and the presence of pulmonary hypertension, arterial blood gas levels. These are only a few. They tend to like CF patients getting connected with a center at a "wellness stage" so they are not too sick to go through the process and they can be less stressed about the whole thing. As you know, when you are not feeling well and battling, that is a hard time to have to connect with a tx center. So, you can be referred well in advance of actually needing a transplant if your CF center is "good at the timing". That being said, you also don't want to connect too early when things are going fine and your numbers are stable since it is such a big step and some of those centers are very busy. Hope this helps.
 

Skye

New member
There are many many variables that go into making a final decision for a tx as everyone is so different. I am not a doc, but some of the criteria I am familiar with are: FEV1 less than 30%, pan resistant meaning resistant to many antibiotics, O2 dependency, heart health and the presence of pulmonary hypertension, arterial blood gas levels. These are only a few. They tend to like CF patients getting connected with a center at a "wellness stage" so they are not too sick to go through the process and they can be less stressed about the whole thing. As you know, when you are not feeling well and battling, that is a hard time to have to connect with a tx center. So, you can be referred well in advance of actually needing a transplant if your CF center is "good at the timing". That being said, you also don't want to connect too early when things are going fine and your numbers are stable since it is such a big step and some of those centers are very busy. Hope this helps.
 

Skye

New member
There are many many variables that go into making a final decision for a tx as everyone is so different. I am not a doc, but some of the criteria I am familiar with are: FEV1 less than 30%, pan resistant meaning resistant to many antibiotics, O2 dependency, heart health and the presence of pulmonary hypertension, arterial blood gas levels. These are only a few. They tend to like CF patients getting connected with a center at a "wellness stage" so they are not too sick to go through the process and they can be less stressed about the whole thing. As you know, when you are not feeling well and battling, that is a hard time to have to connect with a tx center. So, you can be referred well in advance of actually needing a transplant if your CF center is "good at the timing". That being said, you also don't want to connect too early when things are going fine and your numbers are stable since it is such a big step and some of those centers are very busy. Hope this helps.
 

jfarel

New member
First mentioned it to me when I was in the hospital in jan. I knew I was a candidate anyway and was probably going to ask them while I was in the hospital.

My last pft's were 28 percent. Right now I am off oxygen but was using it some while on IV's.

Just my opinion, but I think they should mention the future possibility to cf patients as soon as they get below 50 percent. Not that they need to be evaluated but I think just mentioning it will make many cf'ers take stock of their situation and began to take better care of themselves. With me, I just didn't realize I was sick until I was under 40 percent FEV1. By then it was too late to make drastic improvements.
 

jfarel

New member
First mentioned it to me when I was in the hospital in jan. I knew I was a candidate anyway and was probably going to ask them while I was in the hospital.

My last pft's were 28 percent. Right now I am off oxygen but was using it some while on IV's.

Just my opinion, but I think they should mention the future possibility to cf patients as soon as they get below 50 percent. Not that they need to be evaluated but I think just mentioning it will make many cf'ers take stock of their situation and began to take better care of themselves. With me, I just didn't realize I was sick until I was under 40 percent FEV1. By then it was too late to make drastic improvements.
 

jfarel

New member
First mentioned it to me when I was in the hospital in jan. I knew I was a candidate anyway and was probably going to ask them while I was in the hospital.

My last pft's were 28 percent. Right now I am off oxygen but was using it some while on IV's.

Just my opinion, but I think they should mention the future possibility to cf patients as soon as they get below 50 percent. Not that they need to be evaluated but I think just mentioning it will make many cf'ers take stock of their situation and began to take better care of themselves. With me, I just didn't realize I was sick until I was under 40 percent FEV1. By then it was too late to make drastic improvements.
 

jfarel

New member
First mentioned it to me when I was in the hospital in jan. I knew I was a candidate anyway and was probably going to ask them while I was in the hospital.

My last pft's were 28 percent. Right now I am off oxygen but was using it some while on IV's.

Just my opinion, but I think they should mention the future possibility to cf patients as soon as they get below 50 percent. Not that they need to be evaluated but I think just mentioning it will make many cf'ers take stock of their situation and began to take better care of themselves. With me, I just didn't realize I was sick until I was under 40 percent FEV1. By then it was too late to make drastic improvements.
 

jfarel

New member
First mentioned it to me when I was in the hospital in jan. I knew I was a candidate anyway and was probably going to ask them while I was in the hospital.

My last pft's were 28 percent. Right now I am off oxygen but was using it some while on IV's.

Just my opinion, but I think they should mention the future possibility to cf patients as soon as they get below 50 percent. Not that they need to be evaluated but I think just mentioning it will make many cf'ers take stock of their situation and began to take better care of themselves. With me, I just didn't realize I was sick until I was under 40 percent FEV1. By then it was too late to make drastic improvements.
 

Skye

New member
I do tend to agree with jfarel that it should be talked about at about 50%. It seems like a lot of centers seem to bring it up either in the middle of a crisis or while you are trying to recover from one that drops you below 30%. Not a great time to hear something like that. If it is at least discussed much sooner it is not such a shock. I think there is very little information out there about that particular topic. If patients are better informed, they may be less afraid of the whole prospect.
 

Skye

New member
I do tend to agree with jfarel that it should be talked about at about 50%. It seems like a lot of centers seem to bring it up either in the middle of a crisis or while you are trying to recover from one that drops you below 30%. Not a great time to hear something like that. If it is at least discussed much sooner it is not such a shock. I think there is very little information out there about that particular topic. If patients are better informed, they may be less afraid of the whole prospect.
 

Skye

New member
I do tend to agree with jfarel that it should be talked about at about 50%. It seems like a lot of centers seem to bring it up either in the middle of a crisis or while you are trying to recover from one that drops you below 30%. Not a great time to hear something like that. If it is at least discussed much sooner it is not such a shock. I think there is very little information out there about that particular topic. If patients are better informed, they may be less afraid of the whole prospect.
 

Skye

New member
I do tend to agree with jfarel that it should be talked about at about 50%. It seems like a lot of centers seem to bring it up either in the middle of a crisis or while you are trying to recover from one that drops you below 30%. Not a great time to hear something like that. If it is at least discussed much sooner it is not such a shock. I think there is very little information out there about that particular topic. If patients are better informed, they may be less afraid of the whole prospect.
 

Skye

New member
I do tend to agree with jfarel that it should be talked about at about 50%. It seems like a lot of centers seem to bring it up either in the middle of a crisis or while you are trying to recover from one that drops you below 30%. Not a great time to hear something like that. If it is at least discussed much sooner it is not such a shock. I think there is very little information out there about that particular topic. If patients are better informed, they may be less afraid of the whole prospect.
 
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