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tough decision
- Thread starter gsplover
- Start date
OH I have such empathy for you. I totally understand the quality of life thing. When I am having good days having a tx is the last thing on my mind. When I am doing bad....it hangs like a black cloud.
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
OH I have such empathy for you. I totally understand the quality of life thing. When I am having good days having a tx is the last thing on my mind. When I am doing bad....it hangs like a black cloud.
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
OH I have such empathy for you. I totally understand the quality of life thing. When I am having good days having a tx is the last thing on my mind. When I am doing bad....it hangs like a black cloud.
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
OH I have such empathy for you. I totally understand the quality of life thing. When I am having good days having a tx is the last thing on my mind. When I am doing bad....it hangs like a black cloud.
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
HUGS
OH I have such empathy for you. I totally understand the quality of life thing. When I am having good days having a tx is the last thing on my mind. When I am doing bad....it hangs like a black cloud.
<br />
<br />I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
<br />
<br />This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
<br />
<br />Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
<br />
<br />I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />HUGS
<br />
<br />I manage life ok, but could it be better or do I want it to be better....HELL YA! Yet if I was presented with the ?? that if I could lungs tomorrow would I, I think I think I would faint from having to make that decision.
<br />
<br />This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
<br />
<br />Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
<br />
<br />I guess if it was an easy decision we would all do it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
<br />
<br />HUGS
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote></div>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
</end quote>
I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JazzysMom</b></i>
<br />This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
<br />
<br />
<br />
<br />Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
<br /></end quote>
<br />
<br />I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
<br />
<br />Peace.
<br />This is why even with FEV1 of 30%, frequent hospital & constant weight struggle I havent officially done any evalutions yet.
<br />
<br />
<br />
<br />Dont base what you feel your quality of life should be on what others can or cant handle. Everyones tolerance level is different. Being SOB at 15% might be your SOB at 30% etc.
<br /></end quote>
<br />
<br />I will agree with this point. As far as I know, when I was bedridden for 3 1/2 months and at death's door, my lung function would not have been so low as to qualify me for a transplant list (though that was never a consideration because I didn't yet have a diagnosis). Being too sick to cope cannot be completely gauged by one or two measures, even though I do realize these measures are very significant for whether or not you can get listed.
<br />
<br />Peace.
Hi
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
Hi
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
Hi
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
Hi
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
I am so glad that I visited CF.com tonight.
You have received wonderful advice here. I do not think I could add too much.
I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
I wish you the best and I know you will be living life to the fullest once you receive your new lungs
xoox
Hi
<br />
<br />I am so glad that I visited CF.com tonight.
<br />
<br />You have received wonderful advice here. I do not think I could add too much.
<br />
<br />I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
<br />
<br />Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
<br />
<br />When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
<br />
<br />I wish you the best and I know you will be living life to the fullest once you receive your new lungs
<br />
<br />xoox
<br />
<br />I am so glad that I visited CF.com tonight.
<br />
<br />You have received wonderful advice here. I do not think I could add too much.
<br />
<br />I will say this, always listen to your doctors and weigh what they say. I say get listed as active. You never know how long the wait can be. The unos policy takes sickest patients first. You never know which way your health will turn. I hope you remain stable. Take care of yourself.
<br />
<br />Being on a transplannt list is a nice insurance policy. The transplant doctors would not evaluate you if you were not a candidate. The healthier you are going into transplant, the quicker your recovery will be.
<br />
<br />When you have the chance, log onto transplantbuddies and you will find many CF patients who do not visit here and they will share their transplant experience. You can also read our lung stories on our life stories pages.
<br />
<br />I wish you the best and I know you will be living life to the fullest once you receive your new lungs
<br />
<br />xoox