unsure if ready for TX

[dewgirl]

Tanya,

I'm almost in the exact same state as you. I'm hospitalized or on home IV's alot more often (about once every two months) but my FEV1 can hit 35% at its very best. From talking to my doctor the process is just to get evaluated first. This can take about 3 months.

Then, you go on a wait list only when and if you're ready. But all the tests have been completed so if you need it, it's there. You can be evaluated years before actually being listed. You are only listed when you say you're ready. I'm not sure if this is all transplant center's policy but that's my understanding of the process.

I'm about to start my evaluation process and I feel like you, I'm not quite at the threshhold yet. But, should I take a nose dive with my health it's better to be prepared.

Hope this helped and good luck!

 

[dewgirl]

Tanya,

I'm almost in the exact same state as you. I'm hospitalized or on home IV's alot more often (about once every two months) but my FEV1 can hit 35% at its very best. From talking to my doctor the process is just to get evaluated first. This can take about 3 months.

Then, you go on a wait list only when and if you're ready. But all the tests have been completed so if you need it, it's there. You can be evaluated years before actually being listed. You are only listed when you say you're ready. I'm not sure if this is all transplant center's policy but that's my understanding of the process.

I'm about to start my evaluation process and I feel like you, I'm not quite at the threshhold yet. But, should I take a nose dive with my health it's better to be prepared.

Hope this helped and good luck!

 

[dewgirl]

Tanya,

I'm almost in the exact same state as you. I'm hospitalized or on home IV's alot more often (about once every two months) but my FEV1 can hit 35% at its very best. From talking to my doctor the process is just to get evaluated first. This can take about 3 months.

Then, you go on a wait list only when and if you're ready. But all the tests have been completed so if you need it, it's there. You can be evaluated years before actually being listed. You are only listed when you say you're ready. I'm not sure if this is all transplant center's policy but that's my understanding of the process.

I'm about to start my evaluation process and I feel like you, I'm not quite at the threshhold yet. But, should I take a nose dive with my health it's better to be prepared.

Hope this helped and good luck!

 

[dewgirl]

Tanya,

I'm almost in the exact same state as you. I'm hospitalized or on home IV's alot more often (about once every two months) but my FEV1 can hit 35% at its very best. From talking to my doctor the process is just to get evaluated first. This can take about 3 months.

Then, you go on a wait list only when and if you're ready. But all the tests have been completed so if you need it, it's there. You can be evaluated years before actually being listed. You are only listed when you say you're ready. I'm not sure if this is all transplant center's policy but that's my understanding of the process.

I'm about to start my evaluation process and I feel like you, I'm not quite at the threshhold yet. But, should I take a nose dive with my health it's better to be prepared.

Hope this helped and good luck!

 

[dewgirl]

Tanya,
<br />
<br />I'm almost in the exact same state as you. I'm hospitalized or on home IV's alot more often (about once every two months) but my FEV1 can hit 35% at its very best. From talking to my doctor the process is just to get evaluated first. This can take about 3 months.
<br />
<br />Then, you go on a wait list only when and if you're ready. But all the tests have been completed so if you need it, it's there. You can be evaluated years before actually being listed. You are only listed when you say you're ready. I'm not sure if this is all transplant center's policy but that's my understanding of the process.
<br />
<br />I'm about to start my evaluation process and I feel like you, I'm not quite at the threshhold yet. But, should I take a nose dive with my health it's better to be prepared.
<br />
<br />Hope this helped and good luck!

 

[brogerson]

Tanya,

My numbers were basically the same as yours are now, I had a double tx one month ago on December 14 and I no I made the right decision. So far my lung function is 65% and O2 level is 100% and my lung function should continue to go up as I get stronger. Anyone who is thinking about tx's knows the risks that are involved. We all know that some tx's are unsuccessfull come with a lot of complications.

The Doctor asked if I feel my quality of life is bad enough that is time to take action. Remember your lung function will continue to drop and you will get weaker.

Last year I met someone who was two months out of tx and he waited until he was on 24hr a day oxygen. He told me if he had to make the decision again that he would not of waited. I feel you still need some strength to handle the surgery and the recovery process is 3 to 6 months.

Good luck

 

[brogerson]

Tanya,

My numbers were basically the same as yours are now, I had a double tx one month ago on December 14 and I no I made the right decision. So far my lung function is 65% and O2 level is 100% and my lung function should continue to go up as I get stronger. Anyone who is thinking about tx's knows the risks that are involved. We all know that some tx's are unsuccessfull come with a lot of complications.

The Doctor asked if I feel my quality of life is bad enough that is time to take action. Remember your lung function will continue to drop and you will get weaker.

Last year I met someone who was two months out of tx and he waited until he was on 24hr a day oxygen. He told me if he had to make the decision again that he would not of waited. I feel you still need some strength to handle the surgery and the recovery process is 3 to 6 months.

Good luck

 

[brogerson]

Tanya,

My numbers were basically the same as yours are now, I had a double tx one month ago on December 14 and I no I made the right decision. So far my lung function is 65% and O2 level is 100% and my lung function should continue to go up as I get stronger. Anyone who is thinking about tx's knows the risks that are involved. We all know that some tx's are unsuccessfull come with a lot of complications.

The Doctor asked if I feel my quality of life is bad enough that is time to take action. Remember your lung function will continue to drop and you will get weaker.

Last year I met someone who was two months out of tx and he waited until he was on 24hr a day oxygen. He told me if he had to make the decision again that he would not of waited. I feel you still need some strength to handle the surgery and the recovery process is 3 to 6 months.

Good luck

 

[brogerson]

Tanya,

My numbers were basically the same as yours are now, I had a double tx one month ago on December 14 and I no I made the right decision. So far my lung function is 65% and O2 level is 100% and my lung function should continue to go up as I get stronger. Anyone who is thinking about tx's knows the risks that are involved. We all know that some tx's are unsuccessfull come with a lot of complications.

The Doctor asked if I feel my quality of life is bad enough that is time to take action. Remember your lung function will continue to drop and you will get weaker.

Last year I met someone who was two months out of tx and he waited until he was on 24hr a day oxygen. He told me if he had to make the decision again that he would not of waited. I feel you still need some strength to handle the surgery and the recovery process is 3 to 6 months.

Good luck

 

[brogerson]

Tanya,
<br />
<br />My numbers were basically the same as yours are now, I had a double tx one month ago on December 14 and I no I made the right decision. So far my lung function is 65% and O2 level is 100% and my lung function should continue to go up as I get stronger. Anyone who is thinking about tx's knows the risks that are involved. We all know that some tx's are unsuccessfull come with a lot of complications.
<br />
<br />The Doctor asked if I feel my quality of life is bad enough that is time to take action. Remember your lung function will continue to drop and you will get weaker.
<br />
<br />Last year I met someone who was two months out of tx and he waited until he was on 24hr a day oxygen. He told me if he had to make the decision again that he would not of waited. I feel you still need some strength to handle the surgery and the recovery process is 3 to 6 months.
<br />
<br />Good luck

 

[TwistedTanya]

Thanks everyone for your responses! I have started the pile of evaluation paperwork and have my first meeting this coming Thursday. Physically I feel like I could hold off at least another year but mentally things are starting to get to me. I'm so tired of feeling too sick to go do anything. I want to go visit friends and family and go do fun activities and not be stuck at home all day! Although this Inhaled Aztreonam brings back some energy and less mucous but unfortunetly I can only take it every other month. It has brought my FEV1 to 30% and sometimes my 02 to 95% resting!! The off month though, I run fevers and feel crappy all the time and live off of Xtra Strength Tylenol until the Levaquin kicks in.
I think my biggest hold back is the whole diabetes thing...even though it probably shouldn't be. I just absolutely hate having to prick myself all the time and then the shots. I'm sooo tired of needles!!! And then having to worry and make sure you have enough insulin with you all the time on top of everything else. Plus, doesn't that stuff have to be kept cold? So then I have to take a cooler with me whenever I go anywhere? Plus I worry about those needle spots getting bacteria in them. I've had a couple times when I was on Prednisone and had to deal with the diabetes and ohhhhhh how I hated it! I am a little more ready for TX now than I was last year but I'm still not totally sure all the time...ugh!

 

[TwistedTanya]

Thanks everyone for your responses! I have started the pile of evaluation paperwork and have my first meeting this coming Thursday. Physically I feel like I could hold off at least another year but mentally things are starting to get to me. I'm so tired of feeling too sick to go do anything. I want to go visit friends and family and go do fun activities and not be stuck at home all day! Although this Inhaled Aztreonam brings back some energy and less mucous but unfortunetly I can only take it every other month. It has brought my FEV1 to 30% and sometimes my 02 to 95% resting!! The off month though, I run fevers and feel crappy all the time and live off of Xtra Strength Tylenol until the Levaquin kicks in.
I think my biggest hold back is the whole diabetes thing...even though it probably shouldn't be. I just absolutely hate having to prick myself all the time and then the shots. I'm sooo tired of needles!!! And then having to worry and make sure you have enough insulin with you all the time on top of everything else. Plus, doesn't that stuff have to be kept cold? So then I have to take a cooler with me whenever I go anywhere? Plus I worry about those needle spots getting bacteria in them. I've had a couple times when I was on Prednisone and had to deal with the diabetes and ohhhhhh how I hated it! I am a little more ready for TX now than I was last year but I'm still not totally sure all the time...ugh!

 

[TwistedTanya]

Thanks everyone for your responses! I have started the pile of evaluation paperwork and have my first meeting this coming Thursday. Physically I feel like I could hold off at least another year but mentally things are starting to get to me. I'm so tired of feeling too sick to go do anything. I want to go visit friends and family and go do fun activities and not be stuck at home all day! Although this Inhaled Aztreonam brings back some energy and less mucous but unfortunetly I can only take it every other month. It has brought my FEV1 to 30% and sometimes my 02 to 95% resting!! The off month though, I run fevers and feel crappy all the time and live off of Xtra Strength Tylenol until the Levaquin kicks in.
I think my biggest hold back is the whole diabetes thing...even though it probably shouldn't be. I just absolutely hate having to prick myself all the time and then the shots. I'm sooo tired of needles!!! And then having to worry and make sure you have enough insulin with you all the time on top of everything else. Plus, doesn't that stuff have to be kept cold? So then I have to take a cooler with me whenever I go anywhere? Plus I worry about those needle spots getting bacteria in them. I've had a couple times when I was on Prednisone and had to deal with the diabetes and ohhhhhh how I hated it! I am a little more ready for TX now than I was last year but I'm still not totally sure all the time...ugh!

 

[TwistedTanya]

Thanks everyone for your responses! I have started the pile of evaluation paperwork and have my first meeting this coming Thursday. Physically I feel like I could hold off at least another year but mentally things are starting to get to me. I'm so tired of feeling too sick to go do anything. I want to go visit friends and family and go do fun activities and not be stuck at home all day! Although this Inhaled Aztreonam brings back some energy and less mucous but unfortunetly I can only take it every other month. It has brought my FEV1 to 30% and sometimes my 02 to 95% resting!! The off month though, I run fevers and feel crappy all the time and live off of Xtra Strength Tylenol until the Levaquin kicks in.
I think my biggest hold back is the whole diabetes thing...even though it probably shouldn't be. I just absolutely hate having to prick myself all the time and then the shots. I'm sooo tired of needles!!! And then having to worry and make sure you have enough insulin with you all the time on top of everything else. Plus, doesn't that stuff have to be kept cold? So then I have to take a cooler with me whenever I go anywhere? Plus I worry about those needle spots getting bacteria in them. I've had a couple times when I was on Prednisone and had to deal with the diabetes and ohhhhhh how I hated it! I am a little more ready for TX now than I was last year but I'm still not totally sure all the time...ugh!

 

[TwistedTanya]

Thanks everyone for your responses! I have started the pile of evaluation paperwork and have my first meeting this coming Thursday. Physically I feel like I could hold off at least another year but mentally things are starting to get to me. I'm so tired of feeling too sick to go do anything. I want to go visit friends and family and go do fun activities and not be stuck at home all day! Although this Inhaled Aztreonam brings back some energy and less mucous but unfortunetly I can only take it every other month. It has brought my FEV1 to 30% and sometimes my 02 to 95% resting!! The off month though, I run fevers and feel crappy all the time and live off of Xtra Strength Tylenol until the Levaquin kicks in.
<br />I think my biggest hold back is the whole diabetes thing...even though it probably shouldn't be. I just absolutely hate having to prick myself all the time and then the shots. I'm sooo tired of needles!!! And then having to worry and make sure you have enough insulin with you all the time on top of everything else. Plus, doesn't that stuff have to be kept cold? So then I have to take a cooler with me whenever I go anywhere? Plus I worry about those needle spots getting bacteria in them. I've had a couple times when I was on Prednisone and had to deal with the diabetes and ohhhhhh how I hated it! I am a little more ready for TX now than I was last year but I'm still not totally sure all the time...ugh!

 

[coltsfan715]

Go through the evaluation now. Then if you need more time before being actually listed tell them you need some time to really become okay with it.

I say this because just because you feel "okay" now doesn't mean you won't get seriously ill very fast.

I was evaluated when my FEV1 was around 29%. I was listed for 6 weeks - I took a week after my evaluation ended to get away for a much needed escape. I was listed for 6 weeks and in that 6 weeks - or 2 months from the start of my evaluation to when I was transplanted my FEV1 dropped to 22% or something close to that (after a 3 week stint on IV abx).

You never know how fast things might change for you. You are by no means in a safe area with your health. So I think following the docs advice to at least start the process is a good move. It can sometimes take months to just get the preparation stuff out of the way - the appts and the evaluation before you even get listed.

Also as my docs told me - the healthier you are when you start the process it gives you some time to make a decision and become okay with it without all the stress of your health failing fast. Imagine being below 20% FEV1 and in dire need of a transplant and the stress you would experience having to go through everything while being that ill.


Good Luck with the evaluation. Listen to the docs advice but ultimately you should do what you are comfortable with and if all else ask them point blank there reasoning behind why you should be listed now.

I kind of had the reverse though for mine - my original doc told me I was years away from needing a transplant and I just could feel something wasn't right and I went to another doc that would refer me to a center for evaluation. The Transplant team basically told me I needed to be listed then - and evidentally my gut was right because I would be dead had I waited like my first doc wanted me too.

Just saying that because sometimes we do know our bodies better than the docs, but either way it won't hurt to check into it now.

Lindsey

 

[coltsfan715]

Go through the evaluation now. Then if you need more time before being actually listed tell them you need some time to really become okay with it.

I say this because just because you feel "okay" now doesn't mean you won't get seriously ill very fast.

I was evaluated when my FEV1 was around 29%. I was listed for 6 weeks - I took a week after my evaluation ended to get away for a much needed escape. I was listed for 6 weeks and in that 6 weeks - or 2 months from the start of my evaluation to when I was transplanted my FEV1 dropped to 22% or something close to that (after a 3 week stint on IV abx).

You never know how fast things might change for you. You are by no means in a safe area with your health. So I think following the docs advice to at least start the process is a good move. It can sometimes take months to just get the preparation stuff out of the way - the appts and the evaluation before you even get listed.

Also as my docs told me - the healthier you are when you start the process it gives you some time to make a decision and become okay with it without all the stress of your health failing fast. Imagine being below 20% FEV1 and in dire need of a transplant and the stress you would experience having to go through everything while being that ill.


Good Luck with the evaluation. Listen to the docs advice but ultimately you should do what you are comfortable with and if all else ask them point blank there reasoning behind why you should be listed now.

I kind of had the reverse though for mine - my original doc told me I was years away from needing a transplant and I just could feel something wasn't right and I went to another doc that would refer me to a center for evaluation. The Transplant team basically told me I needed to be listed then - and evidentally my gut was right because I would be dead had I waited like my first doc wanted me too.

Just saying that because sometimes we do know our bodies better than the docs, but either way it won't hurt to check into it now.

Lindsey

 

[coltsfan715]

Go through the evaluation now. Then if you need more time before being actually listed tell them you need some time to really become okay with it.

I say this because just because you feel "okay" now doesn't mean you won't get seriously ill very fast.

I was evaluated when my FEV1 was around 29%. I was listed for 6 weeks - I took a week after my evaluation ended to get away for a much needed escape. I was listed for 6 weeks and in that 6 weeks - or 2 months from the start of my evaluation to when I was transplanted my FEV1 dropped to 22% or something close to that (after a 3 week stint on IV abx).

You never know how fast things might change for you. You are by no means in a safe area with your health. So I think following the docs advice to at least start the process is a good move. It can sometimes take months to just get the preparation stuff out of the way - the appts and the evaluation before you even get listed.

Also as my docs told me - the healthier you are when you start the process it gives you some time to make a decision and become okay with it without all the stress of your health failing fast. Imagine being below 20% FEV1 and in dire need of a transplant and the stress you would experience having to go through everything while being that ill.


Good Luck with the evaluation. Listen to the docs advice but ultimately you should do what you are comfortable with and if all else ask them point blank there reasoning behind why you should be listed now.

I kind of had the reverse though for mine - my original doc told me I was years away from needing a transplant and I just could feel something wasn't right and I went to another doc that would refer me to a center for evaluation. The Transplant team basically told me I needed to be listed then - and evidentally my gut was right because I would be dead had I waited like my first doc wanted me too.

Just saying that because sometimes we do know our bodies better than the docs, but either way it won't hurt to check into it now.

Lindsey

 

[coltsfan715]

Go through the evaluation now. Then if you need more time before being actually listed tell them you need some time to really become okay with it.

I say this because just because you feel "okay" now doesn't mean you won't get seriously ill very fast.

I was evaluated when my FEV1 was around 29%. I was listed for 6 weeks - I took a week after my evaluation ended to get away for a much needed escape. I was listed for 6 weeks and in that 6 weeks - or 2 months from the start of my evaluation to when I was transplanted my FEV1 dropped to 22% or something close to that (after a 3 week stint on IV abx).

You never know how fast things might change for you. You are by no means in a safe area with your health. So I think following the docs advice to at least start the process is a good move. It can sometimes take months to just get the preparation stuff out of the way - the appts and the evaluation before you even get listed.

Also as my docs told me - the healthier you are when you start the process it gives you some time to make a decision and become okay with it without all the stress of your health failing fast. Imagine being below 20% FEV1 and in dire need of a transplant and the stress you would experience having to go through everything while being that ill.


Good Luck with the evaluation. Listen to the docs advice but ultimately you should do what you are comfortable with and if all else ask them point blank there reasoning behind why you should be listed now.

I kind of had the reverse though for mine - my original doc told me I was years away from needing a transplant and I just could feel something wasn't right and I went to another doc that would refer me to a center for evaluation. The Transplant team basically told me I needed to be listed then - and evidentally my gut was right because I would be dead had I waited like my first doc wanted me too.

Just saying that because sometimes we do know our bodies better than the docs, but either way it won't hurt to check into it now.

Lindsey

 

[coltsfan715]

Go through the evaluation now. Then if you need more time before being actually listed tell them you need some time to really become okay with it.
<br />
<br />I say this because just because you feel "okay" now doesn't mean you won't get seriously ill very fast.
<br />
<br />I was evaluated when my FEV1 was around 29%. I was listed for 6 weeks - I took a week after my evaluation ended to get away for a much needed escape. I was listed for 6 weeks and in that 6 weeks - or 2 months from the start of my evaluation to when I was transplanted my FEV1 dropped to 22% or something close to that (after a 3 week stint on IV abx).
<br />
<br />You never know how fast things might change for you. You are by no means in a safe area with your health. So I think following the docs advice to at least start the process is a good move. It can sometimes take months to just get the preparation stuff out of the way - the appts and the evaluation before you even get listed.
<br />
<br />Also as my docs told me - the healthier you are when you start the process it gives you some time to make a decision and become okay with it without all the stress of your health failing fast. Imagine being below 20% FEV1 and in dire need of a transplant and the stress you would experience having to go through everything while being that ill.
<br />
<br />
<br />Good Luck with the evaluation. Listen to the docs advice but ultimately you should do what you are comfortable with and if all else ask them point blank there reasoning behind why you should be listed now.
<br />
<br />I kind of had the reverse though for mine - my original doc told me I was years away from needing a transplant and I just could feel something wasn't right and I went to another doc that would refer me to a center for evaluation. The Transplant team basically told me I needed to be listed then - and evidentally my gut was right because I would be dead had I waited like my first doc wanted me too.
<br />
<br />Just saying that because sometimes we do know our bodies better than the docs, but either way it won't hurt to check into it now.
<br />
<br />Lindsey