Do You Have To Be On Oxygen To Get On The Transplant List???

arche4life · Jun 18, 2009

I am 23 years old and I am currently going through the transplant evaluation process and I was wondering if you have to be on oxygen to be placed on the list? From all of the stories I have read it sounds like that is a definite yes. I currently am not on oxygen... well I do use it at night some times but I don't have to have a tank with me when I go to school or anything. My O2 sat is around 94-95% but my FEV1 wavers between 20-30% and has gone as low as 18%. However I don't really have much of a quality of life because I am so sick all the time. I have hemopthesis almost every day and since June of late year I have been in the hospital about 4 different times, one time for almost 3 months straight. It scares me to death thinking about having to wheel around a tank all the time, cause I've done it before and I don't think I should have to get that sick before I can get on the list, especially since you never know how long it might take to get a set of lungs.

I have to admit I am extremely jealous hearing about the wonderful things everyone is doing post transplant and though I am obviously terrified to have the surgery and I don't want to go through the pain, it's even more scary to think about my life continuing on like it currently is, no constantly catering to my illness, no social life or anything. I was just curious about other peoples experiences. Any info would help, thanks xoxo

arche4life · Jun 18, 2009

I am 23 years old and I am currently going through the transplant evaluation process and I was wondering if you have to be on oxygen to be placed on the list? From all of the stories I have read it sounds like that is a definite yes. I currently am not on oxygen... well I do use it at night some times but I don't have to have a tank with me when I go to school or anything. My O2 sat is around 94-95% but my FEV1 wavers between 20-30% and has gone as low as 18%. However I don't really have much of a quality of life because I am so sick all the time. I have hemopthesis almost every day and since June of late year I have been in the hospital about 4 different times, one time for almost 3 months straight. It scares me to death thinking about having to wheel around a tank all the time, cause I've done it before and I don't think I should have to get that sick before I can get on the list, especially since you never know how long it might take to get a set of lungs.

I have to admit I am extremely jealous hearing about the wonderful things everyone is doing post transplant and though I am obviously terrified to have the surgery and I don't want to go through the pain, it's even more scary to think about my life continuing on like it currently is, no constantly catering to my illness, no social life or anything. I was just curious about other peoples experiences. Any info would help, thanks xoxo

arche4life · Jun 18, 2009

I am 23 years old and I am currently going through the transplant evaluation process and I was wondering if you have to be on oxygen to be placed on the list? From all of the stories I have read it sounds like that is a definite yes. I currently am not on oxygen... well I do use it at night some times but I don't have to have a tank with me when I go to school or anything. My O2 sat is around 94-95% but my FEV1 wavers between 20-30% and has gone as low as 18%. However I don't really have much of a quality of life because I am so sick all the time. I have hemopthesis almost every day and since June of late year I have been in the hospital about 4 different times, one time for almost 3 months straight. It scares me to death thinking about having to wheel around a tank all the time, cause I've done it before and I don't think I should have to get that sick before I can get on the list, especially since you never know how long it might take to get a set of lungs.

I have to admit I am extremely jealous hearing about the wonderful things everyone is doing post transplant and though I am obviously terrified to have the surgery and I don't want to go through the pain, it's even more scary to think about my life continuing on like it currently is, no constantly catering to my illness, no social life or anything. I was just curious about other peoples experiences. Any info would help, thanks xoxo

arche4life · Jun 18, 2009

I am 23 years old and I am currently going through the transplant evaluation process and I was wondering if you have to be on oxygen to be placed on the list? From all of the stories I have read it sounds like that is a definite yes. I currently am not on oxygen... well I do use it at night some times but I don't have to have a tank with me when I go to school or anything. My O2 sat is around 94-95% but my FEV1 wavers between 20-30% and has gone as low as 18%. However I don't really have much of a quality of life because I am so sick all the time. I have hemopthesis almost every day and since June of late year I have been in the hospital about 4 different times, one time for almost 3 months straight. It scares me to death thinking about having to wheel around a tank all the time, cause I've done it before and I don't think I should have to get that sick before I can get on the list, especially since you never know how long it might take to get a set of lungs.

I have to admit I am extremely jealous hearing about the wonderful things everyone is doing post transplant and though I am obviously terrified to have the surgery and I don't want to go through the pain, it's even more scary to think about my life continuing on like it currently is, no constantly catering to my illness, no social life or anything. I was just curious about other peoples experiences. Any info would help, thanks xoxo

arche4life · Jun 18, 2009

I am 23 years old and I am currently going through the transplant evaluation process and I was wondering if you have to be on oxygen to be placed on the list? From all of the stories I have read it sounds like that is a definite yes. I currently am not on oxygen... well I do use it at night some times but I don't have to have a tank with me when I go to school or anything. My O2 sat is around 94-95% but my FEV1 wavers between 20-30% and has gone as low as 18%. However I don't really have much of a quality of life because I am so sick all the time. I have hemopthesis almost every day and since June of late year I have been in the hospital about 4 different times, one time for almost 3 months straight. It scares me to death thinking about having to wheel around a tank all the time, cause I've done it before and I don't think I should have to get that sick before I can get on the list, especially since you never know how long it might take to get a set of lungs.
 
 I have to admit I am extremely jealous hearing about the wonderful things everyone is doing post transplant and though I am obviously terrified to have the surgery and I don't want to go through the pain, it's even more scary to think about my life continuing on like it currently is, no constantly catering to my illness, no social life or anything. I was just curious about other peoples experiences. Any info would help, thanks xoxo

coltsfan715 · Jun 18, 2009

I do not believe that you need to be because when I first had my appointment I was told that it was imperative that I get evaluated because I was as sick as I could get without being on Oxygen.

That being said withina month (before I could get evaluated) I was on O2. So when I was listed I was on O2.

A did however have a friend that was evaluated and the docs said they wanted to list her and she was not on O2 at the time. She chose to wait a little while because she was not ready.

Being listed depends on more than just the need for oxygen, so I would imagine that if your other test results indicate that you need to be listed then you will be listed. If however you are evaluated and they think that you are okay to wait another few months they may choose to bring you back and decide after 3 months or something along those lines.

So I would say you do NOT have to be on O2 but more ALL of your test results combined need to indicate that right now you qualify to be listed for transplant.

Again not 100% on that but just from knowing my friends situation and knowing some of the stuff they consider before listing you I would say it is not necessary to be on O2 to be listed.

Lindsey

coltsfan715 · Jun 18, 2009

I do not believe that you need to be because when I first had my appointment I was told that it was imperative that I get evaluated because I was as sick as I could get without being on Oxygen.

That being said withina month (before I could get evaluated) I was on O2. So when I was listed I was on O2.

A did however have a friend that was evaluated and the docs said they wanted to list her and she was not on O2 at the time. She chose to wait a little while because she was not ready.

Being listed depends on more than just the need for oxygen, so I would imagine that if your other test results indicate that you need to be listed then you will be listed. If however you are evaluated and they think that you are okay to wait another few months they may choose to bring you back and decide after 3 months or something along those lines.

So I would say you do NOT have to be on O2 but more ALL of your test results combined need to indicate that right now you qualify to be listed for transplant.

Again not 100% on that but just from knowing my friends situation and knowing some of the stuff they consider before listing you I would say it is not necessary to be on O2 to be listed.

Lindsey

coltsfan715 · Jun 18, 2009

I do not believe that you need to be because when I first had my appointment I was told that it was imperative that I get evaluated because I was as sick as I could get without being on Oxygen.

That being said withina month (before I could get evaluated) I was on O2. So when I was listed I was on O2.

A did however have a friend that was evaluated and the docs said they wanted to list her and she was not on O2 at the time. She chose to wait a little while because she was not ready.

Being listed depends on more than just the need for oxygen, so I would imagine that if your other test results indicate that you need to be listed then you will be listed. If however you are evaluated and they think that you are okay to wait another few months they may choose to bring you back and decide after 3 months or something along those lines.

So I would say you do NOT have to be on O2 but more ALL of your test results combined need to indicate that right now you qualify to be listed for transplant.

Again not 100% on that but just from knowing my friends situation and knowing some of the stuff they consider before listing you I would say it is not necessary to be on O2 to be listed.

Lindsey

coltsfan715 · Jun 18, 2009

I do not believe that you need to be because when I first had my appointment I was told that it was imperative that I get evaluated because I was as sick as I could get without being on Oxygen.

That being said withina month (before I could get evaluated) I was on O2. So when I was listed I was on O2.

A did however have a friend that was evaluated and the docs said they wanted to list her and she was not on O2 at the time. She chose to wait a little while because she was not ready.

Being listed depends on more than just the need for oxygen, so I would imagine that if your other test results indicate that you need to be listed then you will be listed. If however you are evaluated and they think that you are okay to wait another few months they may choose to bring you back and decide after 3 months or something along those lines.

So I would say you do NOT have to be on O2 but more ALL of your test results combined need to indicate that right now you qualify to be listed for transplant.

Again not 100% on that but just from knowing my friends situation and knowing some of the stuff they consider before listing you I would say it is not necessary to be on O2 to be listed.

Lindsey

coltsfan715 · Jun 18, 2009

I do not believe that you need to be because when I first had my appointment I was told that it was imperative that I get evaluated because I was as sick as I could get without being on Oxygen.
 
 That being said withina month (before I could get evaluated) I was on O2. So when I was listed I was on O2.
 
 A did however have a friend that was evaluated and the docs said they wanted to list her and she was not on O2 at the time. She chose to wait a little while because she was not ready.
 
 Being listed depends on more than just the need for oxygen, so I would imagine that if your other test results indicate that you need to be listed then you will be listed. If however you are evaluated and they think that you are okay to wait another few months they may choose to bring you back and decide after 3 months or something along those lines.
 
 So I would say you do NOT have to be on O2 but more ALL of your test results combined need to indicate that right now you qualify to be listed for transplant.
 
 Again not 100% on that but just from knowing my friends situation and knowing some of the stuff they consider before listing you I would say it is not necessary to be on O2 to be listed.
 
 Lindsey

TwistedTanya · Jun 18, 2009

I just got listed a week ago and I only use oxygen when sleeping or to exercise. My 02 saturation is around 94% and my FEV1 is around 29%. However, I am lucky b/c my center is smaller and been doing LTX for about 5 years so they are more eager to list people than some of these large centers who are overwhelmed with patients and may only take the more critical ones. SO I think it all depends on what center you go to. There is also an average wait time of 3 months at my center so I won't have to wait years like some people. I'm listed at Tampa General in FL.

TwistedTanya · Jun 18, 2009

I just got listed a week ago and I only use oxygen when sleeping or to exercise. My 02 saturation is around 94% and my FEV1 is around 29%. However, I am lucky b/c my center is smaller and been doing LTX for about 5 years so they are more eager to list people than some of these large centers who are overwhelmed with patients and may only take the more critical ones. SO I think it all depends on what center you go to. There is also an average wait time of 3 months at my center so I won't have to wait years like some people. I'm listed at Tampa General in FL.

TwistedTanya · Jun 18, 2009

I just got listed a week ago and I only use oxygen when sleeping or to exercise. My 02 saturation is around 94% and my FEV1 is around 29%. However, I am lucky b/c my center is smaller and been doing LTX for about 5 years so they are more eager to list people than some of these large centers who are overwhelmed with patients and may only take the more critical ones. SO I think it all depends on what center you go to. There is also an average wait time of 3 months at my center so I won't have to wait years like some people. I'm listed at Tampa General in FL.

TwistedTanya · Jun 18, 2009

I just got listed a week ago and I only use oxygen when sleeping or to exercise. My 02 saturation is around 94% and my FEV1 is around 29%. However, I am lucky b/c my center is smaller and been doing LTX for about 5 years so they are more eager to list people than some of these large centers who are overwhelmed with patients and may only take the more critical ones. SO I think it all depends on what center you go to. There is also an average wait time of 3 months at my center so I won't have to wait years like some people. I'm listed at Tampa General in FL.

TwistedTanya · Jun 18, 2009

I just got listed a week ago and I only use oxygen when sleeping or to exercise. My 02 saturation is around 94% and my FEV1 is around 29%. However, I am lucky b/c my center is smaller and been doing LTX for about 5 years so they are more eager to list people than some of these large centers who are overwhelmed with patients and may only take the more critical ones. SO I think it all depends on what center you go to. There is also an average wait time of 3 months at my center so I won't have to wait years like some people. I'm listed at Tampa General in FL.

Transplantmommy · Jun 18, 2009

You don't have to be on O2 to be on the list or even to get the transplant. But, it will help on your lung allocation score if you are on O2.

I was not on O2 when I was evaluated (except for at night) but by the time I had the transplant, I had been on O2 for 6 months. Yes, it was a pain in the butt to lug the O2 around but it made getting around so much easier because I was getting the O2 that I needed.

Transplantmommy · Jun 18, 2009

You don't have to be on O2 to be on the list or even to get the transplant. But, it will help on your lung allocation score if you are on O2.

I was not on O2 when I was evaluated (except for at night) but by the time I had the transplant, I had been on O2 for 6 months. Yes, it was a pain in the butt to lug the O2 around but it made getting around so much easier because I was getting the O2 that I needed.

Transplantmommy · Jun 18, 2009

You don't have to be on O2 to be on the list or even to get the transplant. But, it will help on your lung allocation score if you are on O2.

I was not on O2 when I was evaluated (except for at night) but by the time I had the transplant, I had been on O2 for 6 months. Yes, it was a pain in the butt to lug the O2 around but it made getting around so much easier because I was getting the O2 that I needed.

Transplantmommy · Jun 18, 2009

You don't have to be on O2 to be on the list or even to get the transplant. But, it will help on your lung allocation score if you are on O2.

I was not on O2 when I was evaluated (except for at night) but by the time I had the transplant, I had been on O2 for 6 months. Yes, it was a pain in the butt to lug the O2 around but it made getting around so much easier because I was getting the O2 that I needed.

Transplantmommy · Jun 18, 2009

You don't have to be on O2 to be on the list or even to get the transplant. But, it will help on your lung allocation score if you are on O2.
 
 I was not on O2 when I was evaluated (except for at night) but by the time I had the transplant, I had been on O2 for 6 months. Yes, it was a pain in the butt to lug the O2 around but it made getting around so much easier because I was getting the O2 that I needed.

Do You Have To Be On Oxygen To Get On The Transplant List???

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