My evaluation?

jfarel

New member
After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker.

Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also wish they would do the transplant before I get so I can barely walk and function. I don't want to get that sick, but I'm afraid that might happen.

My lung function was 27 percent yesterday. Co2 was around 35 percent. Resting O2 was 92-94. During 6 minute walk I dropped slowly from 92-87. I guess based on the rest of the tests my doctor didn't think I should be listed. I am all for listening to the doctor, especially with the success rate at my clinic. I am just wondering if the reason they aren't listing me is because my clinic/hospital only does 20-25 lung tx per year.

If I went to the Univ. of Pittsburgh where they do over 100 tx per year, do you guys think they would put me on the list. I am not really considering going there right now, but like I said, I don't want be stuck waiting and bedridden.

I think if you can walk into the hospital on the day of your transplant your recovery is probably going to be much quicker. Maybe I am wrong. Again, I am not ready yet, but I just don't want to wait too long.

What to you'll think?

John
 

jfarel

New member
After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker.

Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also wish they would do the transplant before I get so I can barely walk and function. I don't want to get that sick, but I'm afraid that might happen.

My lung function was 27 percent yesterday. Co2 was around 35 percent. Resting O2 was 92-94. During 6 minute walk I dropped slowly from 92-87. I guess based on the rest of the tests my doctor didn't think I should be listed. I am all for listening to the doctor, especially with the success rate at my clinic. I am just wondering if the reason they aren't listing me is because my clinic/hospital only does 20-25 lung tx per year.

If I went to the Univ. of Pittsburgh where they do over 100 tx per year, do you guys think they would put me on the list. I am not really considering going there right now, but like I said, I don't want be stuck waiting and bedridden.

I think if you can walk into the hospital on the day of your transplant your recovery is probably going to be much quicker. Maybe I am wrong. Again, I am not ready yet, but I just don't want to wait too long.

What to you'll think?

John
 

jfarel

New member
After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker.

Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also wish they would do the transplant before I get so I can barely walk and function. I don't want to get that sick, but I'm afraid that might happen.

My lung function was 27 percent yesterday. Co2 was around 35 percent. Resting O2 was 92-94. During 6 minute walk I dropped slowly from 92-87. I guess based on the rest of the tests my doctor didn't think I should be listed. I am all for listening to the doctor, especially with the success rate at my clinic. I am just wondering if the reason they aren't listing me is because my clinic/hospital only does 20-25 lung tx per year.

If I went to the Univ. of Pittsburgh where they do over 100 tx per year, do you guys think they would put me on the list. I am not really considering going there right now, but like I said, I don't want be stuck waiting and bedridden.

I think if you can walk into the hospital on the day of your transplant your recovery is probably going to be much quicker. Maybe I am wrong. Again, I am not ready yet, but I just don't want to wait too long.

What to you'll think?

John
 

jfarel

New member
After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker.

Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also wish they would do the transplant before I get so I can barely walk and function. I don't want to get that sick, but I'm afraid that might happen.

My lung function was 27 percent yesterday. Co2 was around 35 percent. Resting O2 was 92-94. During 6 minute walk I dropped slowly from 92-87. I guess based on the rest of the tests my doctor didn't think I should be listed. I am all for listening to the doctor, especially with the success rate at my clinic. I am just wondering if the reason they aren't listing me is because my clinic/hospital only does 20-25 lung tx per year.

If I went to the Univ. of Pittsburgh where they do over 100 tx per year, do you guys think they would put me on the list. I am not really considering going there right now, but like I said, I don't want be stuck waiting and bedridden.

I think if you can walk into the hospital on the day of your transplant your recovery is probably going to be much quicker. Maybe I am wrong. Again, I am not ready yet, but I just don't want to wait too long.

What to you'll think?

John
 

jfarel

New member
After my evaluation my doctor basically said I was too healthy to be listed for transplant. They will put me on the list in the future, but not unless I get sicker.

Basically, I felt like it was the right decision. However, sometime I have bad days and feel like I should be on the list. I also wish they would do the transplant before I get so I can barely walk and function. I don't want to get that sick, but I'm afraid that might happen.

My lung function was 27 percent yesterday. Co2 was around 35 percent. Resting O2 was 92-94. During 6 minute walk I dropped slowly from 92-87. I guess based on the rest of the tests my doctor didn't think I should be listed. I am all for listening to the doctor, especially with the success rate at my clinic. I am just wondering if the reason they aren't listing me is because my clinic/hospital only does 20-25 lung tx per year.

If I went to the Univ. of Pittsburgh where they do over 100 tx per year, do you guys think they would put me on the list. I am not really considering going there right now, but like I said, I don't want be stuck waiting and bedridden.

I think if you can walk into the hospital on the day of your transplant your recovery is probably going to be much quicker. Maybe I am wrong. Again, I am not ready yet, but I just don't want to wait too long.

What to you'll think?

John
 

CountryGirl

New member
Hey, my name is Anna. I got my transplant on July 25, 2007. I went to Stanford for my transplant and when I first went out there for my evaluation they told me the same thing, my pfts were around 32ish. I was going in and out of the hospital for two weeks stays every month and my pfts got to the low 20s. About two months after going home and feeling like all hope was lost, i got so sick that even two weeks of IVs didnt improve my lung function and Stanford called me to come out right away. I was listed with my pfts in the low thirties. I was only on O2 at night or when I excercised, which was pretty much never and when I did my six minute walk, I had the numbers as you did.

I think you should go to another transplant center. Like you said, you dont want to be cripled and desperate when they decide to list you. Then you still have to wait for the lungs.
 

CountryGirl

New member
Hey, my name is Anna. I got my transplant on July 25, 2007. I went to Stanford for my transplant and when I first went out there for my evaluation they told me the same thing, my pfts were around 32ish. I was going in and out of the hospital for two weeks stays every month and my pfts got to the low 20s. About two months after going home and feeling like all hope was lost, i got so sick that even two weeks of IVs didnt improve my lung function and Stanford called me to come out right away. I was listed with my pfts in the low thirties. I was only on O2 at night or when I excercised, which was pretty much never and when I did my six minute walk, I had the numbers as you did.

I think you should go to another transplant center. Like you said, you dont want to be cripled and desperate when they decide to list you. Then you still have to wait for the lungs.
 

CountryGirl

New member
Hey, my name is Anna. I got my transplant on July 25, 2007. I went to Stanford for my transplant and when I first went out there for my evaluation they told me the same thing, my pfts were around 32ish. I was going in and out of the hospital for two weeks stays every month and my pfts got to the low 20s. About two months after going home and feeling like all hope was lost, i got so sick that even two weeks of IVs didnt improve my lung function and Stanford called me to come out right away. I was listed with my pfts in the low thirties. I was only on O2 at night or when I excercised, which was pretty much never and when I did my six minute walk, I had the numbers as you did.

I think you should go to another transplant center. Like you said, you dont want to be cripled and desperate when they decide to list you. Then you still have to wait for the lungs.
 

CountryGirl

New member
Hey, my name is Anna. I got my transplant on July 25, 2007. I went to Stanford for my transplant and when I first went out there for my evaluation they told me the same thing, my pfts were around 32ish. I was going in and out of the hospital for two weeks stays every month and my pfts got to the low 20s. About two months after going home and feeling like all hope was lost, i got so sick that even two weeks of IVs didnt improve my lung function and Stanford called me to come out right away. I was listed with my pfts in the low thirties. I was only on O2 at night or when I excercised, which was pretty much never and when I did my six minute walk, I had the numbers as you did.

I think you should go to another transplant center. Like you said, you dont want to be cripled and desperate when they decide to list you. Then you still have to wait for the lungs.
 

CountryGirl

New member
Hey, my name is Anna. I got my transplant on July 25, 2007. I went to Stanford for my transplant and when I first went out there for my evaluation they told me the same thing, my pfts were around 32ish. I was going in and out of the hospital for two weeks stays every month and my pfts got to the low 20s. About two months after going home and feeling like all hope was lost, i got so sick that even two weeks of IVs didnt improve my lung function and Stanford called me to come out right away. I was listed with my pfts in the low thirties. I was only on O2 at night or when I excercised, which was pretty much never and when I did my six minute walk, I had the numbers as you did.

I think you should go to another transplant center. Like you said, you dont want to be cripled and desperate when they decide to list you. Then you still have to wait for the lungs.
 

jfarel

New member
Were you put on the list with pft's in the low 30's or low to mid 20's? I'm a little confused? You said when you were low 30's they told you the same thing as me? But they listed you anyway? Or did they list you after the IV's and drop in pft's?

I probably won't go to another center right away. I got my g-tube in December and I want to see if in 4-6 months I've gained some weight and my pft's are improving. Certainly by this summer if I notice I am declining (or get sick before than) I will look into another center if they are still hesitant about listing me. If I want to get listed at another center, I don't have to repeat the whole evaluation do I?

Also, right now I only need IV's every 3-4 months. I think this last episode in January was an exception. That was something my doctor mentioned. If I start needing IV's every month that would probably warrant putting me back on the list.

I am still a little hesitant to get listed at another center but I definitely want to hear others thoughts on the topic.

Thanks Anna
 

jfarel

New member
Were you put on the list with pft's in the low 30's or low to mid 20's? I'm a little confused? You said when you were low 30's they told you the same thing as me? But they listed you anyway? Or did they list you after the IV's and drop in pft's?

I probably won't go to another center right away. I got my g-tube in December and I want to see if in 4-6 months I've gained some weight and my pft's are improving. Certainly by this summer if I notice I am declining (or get sick before than) I will look into another center if they are still hesitant about listing me. If I want to get listed at another center, I don't have to repeat the whole evaluation do I?

Also, right now I only need IV's every 3-4 months. I think this last episode in January was an exception. That was something my doctor mentioned. If I start needing IV's every month that would probably warrant putting me back on the list.

I am still a little hesitant to get listed at another center but I definitely want to hear others thoughts on the topic.

Thanks Anna
 

jfarel

New member
Were you put on the list with pft's in the low 30's or low to mid 20's? I'm a little confused? You said when you were low 30's they told you the same thing as me? But they listed you anyway? Or did they list you after the IV's and drop in pft's?

I probably won't go to another center right away. I got my g-tube in December and I want to see if in 4-6 months I've gained some weight and my pft's are improving. Certainly by this summer if I notice I am declining (or get sick before than) I will look into another center if they are still hesitant about listing me. If I want to get listed at another center, I don't have to repeat the whole evaluation do I?

Also, right now I only need IV's every 3-4 months. I think this last episode in January was an exception. That was something my doctor mentioned. If I start needing IV's every month that would probably warrant putting me back on the list.

I am still a little hesitant to get listed at another center but I definitely want to hear others thoughts on the topic.

Thanks Anna
 

jfarel

New member
Were you put on the list with pft's in the low 30's or low to mid 20's? I'm a little confused? You said when you were low 30's they told you the same thing as me? But they listed you anyway? Or did they list you after the IV's and drop in pft's?

I probably won't go to another center right away. I got my g-tube in December and I want to see if in 4-6 months I've gained some weight and my pft's are improving. Certainly by this summer if I notice I am declining (or get sick before than) I will look into another center if they are still hesitant about listing me. If I want to get listed at another center, I don't have to repeat the whole evaluation do I?

Also, right now I only need IV's every 3-4 months. I think this last episode in January was an exception. That was something my doctor mentioned. If I start needing IV's every month that would probably warrant putting me back on the list.

I am still a little hesitant to get listed at another center but I definitely want to hear others thoughts on the topic.

Thanks Anna
 

jfarel

New member
Were you put on the list with pft's in the low 30's or low to mid 20's? I'm a little confused? You said when you were low 30's they told you the same thing as me? But they listed you anyway? Or did they list you after the IV's and drop in pft's?

I probably won't go to another center right away. I got my g-tube in December and I want to see if in 4-6 months I've gained some weight and my pft's are improving. Certainly by this summer if I notice I am declining (or get sick before than) I will look into another center if they are still hesitant about listing me. If I want to get listed at another center, I don't have to repeat the whole evaluation do I?

Also, right now I only need IV's every 3-4 months. I think this last episode in January was an exception. That was something my doctor mentioned. If I start needing IV's every month that would probably warrant putting me back on the list.

I am still a little hesitant to get listed at another center but I definitely want to hear others thoughts on the topic.

Thanks Anna
 

Skye

New member
Jfarel,

In my humble opinion, I think the most important question you can ask yourself is: what is your quality of life? I think the thing that gets people listed is those frequent hospitalizations. Anna sounds like she was really struggling. You don't sound like you are spending a LOT of time in the hospital and are you enjoying your everyday life. My tx team told me the same thing as you and sent me away for another year. I had actually improved from the previous year by staying on top of things. My numbers are similar to yours by the way. Maybe a little better on the O2 side. It seems like people just instinctively know when it is time. I look at it that the longer I can put this off, the better the technology gets!! Just in the years time that I have improved, they have hired a new surgeon with an advanced technique. What might take some of the pressure off of you is finding a center that has a shorter waiting time. That is an important factor. The average wait time at my center is about 90 days. That might come in handy some day. You don't have to do that now. Give yourself a break from all of this for a little while. You have been through a lot. It is amazaing the perspective that you can get if you will just step away from it for a minute. You can always go for a consult at another center in a few months. Each center is different as far as there protocol for evaluation, but maybe just a consult would get some of your questions answered. Hope this helps! I feel like I rambled<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Skye

New member
Jfarel,

In my humble opinion, I think the most important question you can ask yourself is: what is your quality of life? I think the thing that gets people listed is those frequent hospitalizations. Anna sounds like she was really struggling. You don't sound like you are spending a LOT of time in the hospital and are you enjoying your everyday life. My tx team told me the same thing as you and sent me away for another year. I had actually improved from the previous year by staying on top of things. My numbers are similar to yours by the way. Maybe a little better on the O2 side. It seems like people just instinctively know when it is time. I look at it that the longer I can put this off, the better the technology gets!! Just in the years time that I have improved, they have hired a new surgeon with an advanced technique. What might take some of the pressure off of you is finding a center that has a shorter waiting time. That is an important factor. The average wait time at my center is about 90 days. That might come in handy some day. You don't have to do that now. Give yourself a break from all of this for a little while. You have been through a lot. It is amazaing the perspective that you can get if you will just step away from it for a minute. You can always go for a consult at another center in a few months. Each center is different as far as there protocol for evaluation, but maybe just a consult would get some of your questions answered. Hope this helps! I feel like I rambled<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Skye

New member
Jfarel,

In my humble opinion, I think the most important question you can ask yourself is: what is your quality of life? I think the thing that gets people listed is those frequent hospitalizations. Anna sounds like she was really struggling. You don't sound like you are spending a LOT of time in the hospital and are you enjoying your everyday life. My tx team told me the same thing as you and sent me away for another year. I had actually improved from the previous year by staying on top of things. My numbers are similar to yours by the way. Maybe a little better on the O2 side. It seems like people just instinctively know when it is time. I look at it that the longer I can put this off, the better the technology gets!! Just in the years time that I have improved, they have hired a new surgeon with an advanced technique. What might take some of the pressure off of you is finding a center that has a shorter waiting time. That is an important factor. The average wait time at my center is about 90 days. That might come in handy some day. You don't have to do that now. Give yourself a break from all of this for a little while. You have been through a lot. It is amazaing the perspective that you can get if you will just step away from it for a minute. You can always go for a consult at another center in a few months. Each center is different as far as there protocol for evaluation, but maybe just a consult would get some of your questions answered. Hope this helps! I feel like I rambled<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Skye

New member
Jfarel,

In my humble opinion, I think the most important question you can ask yourself is: what is your quality of life? I think the thing that gets people listed is those frequent hospitalizations. Anna sounds like she was really struggling. You don't sound like you are spending a LOT of time in the hospital and are you enjoying your everyday life. My tx team told me the same thing as you and sent me away for another year. I had actually improved from the previous year by staying on top of things. My numbers are similar to yours by the way. Maybe a little better on the O2 side. It seems like people just instinctively know when it is time. I look at it that the longer I can put this off, the better the technology gets!! Just in the years time that I have improved, they have hired a new surgeon with an advanced technique. What might take some of the pressure off of you is finding a center that has a shorter waiting time. That is an important factor. The average wait time at my center is about 90 days. That might come in handy some day. You don't have to do that now. Give yourself a break from all of this for a little while. You have been through a lot. It is amazaing the perspective that you can get if you will just step away from it for a minute. You can always go for a consult at another center in a few months. Each center is different as far as there protocol for evaluation, but maybe just a consult would get some of your questions answered. Hope this helps! I feel like I rambled<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Skye

New member
Jfarel,

In my humble opinion, I think the most important question you can ask yourself is: what is your quality of life? I think the thing that gets people listed is those frequent hospitalizations. Anna sounds like she was really struggling. You don't sound like you are spending a LOT of time in the hospital and are you enjoying your everyday life. My tx team told me the same thing as you and sent me away for another year. I had actually improved from the previous year by staying on top of things. My numbers are similar to yours by the way. Maybe a little better on the O2 side. It seems like people just instinctively know when it is time. I look at it that the longer I can put this off, the better the technology gets!! Just in the years time that I have improved, they have hired a new surgeon with an advanced technique. What might take some of the pressure off of you is finding a center that has a shorter waiting time. That is an important factor. The average wait time at my center is about 90 days. That might come in handy some day. You don't have to do that now. Give yourself a break from all of this for a little while. You have been through a lot. It is amazaing the perspective that you can get if you will just step away from it for a minute. You can always go for a consult at another center in a few months. Each center is different as far as there protocol for evaluation, but maybe just a consult would get some of your questions answered. Hope this helps! I feel like I rambled<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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