when should I think about a lung transplant?

tashalinnxo · Dec 14, 2008

I am 18 years old and back in january was in the ICU, my lungs were bleeding(which has never happend) and I was on a ventelator for about a week. I actually got better real faster, faster than they predicted. I've always done that. But that was the worst I've ever been. My lungs have stayed at around the 55%-67% PFT range. They haven't gone up since january.. I was wondering if anyone can tell me how long should I wait to try for a lung transplant and how bad do I have to be? I feel great right now but my highest PFT's are in the 80's and I haven't had that in a longgg time. Also, a big concern is, I've heard that getting a lung transplant is a 50-50 chance of dying because it's one of the most dangerous surgerys. How true is this?

Thank you to anyone that can help,
-Tasha

tashalinnxo · Dec 14, 2008

I am 18 years old and back in january was in the ICU, my lungs were bleeding(which has never happend) and I was on a ventelator for about a week. I actually got better real faster, faster than they predicted. I've always done that. But that was the worst I've ever been. My lungs have stayed at around the 55%-67% PFT range. They haven't gone up since january.. I was wondering if anyone can tell me how long should I wait to try for a lung transplant and how bad do I have to be? I feel great right now but my highest PFT's are in the 80's and I haven't had that in a longgg time. Also, a big concern is, I've heard that getting a lung transplant is a 50-50 chance of dying because it's one of the most dangerous surgerys. How true is this?

Thank you to anyone that can help,
-Tasha

tashalinnxo · Dec 14, 2008

I am 18 years old and back in january was in the ICU, my lungs were bleeding(which has never happend) and I was on a ventelator for about a week. I actually got better real faster, faster than they predicted. I've always done that. But that was the worst I've ever been. My lungs have stayed at around the 55%-67% PFT range. They haven't gone up since january.. I was wondering if anyone can tell me how long should I wait to try for a lung transplant and how bad do I have to be? I feel great right now but my highest PFT's are in the 80's and I haven't had that in a longgg time. Also, a big concern is, I've heard that getting a lung transplant is a 50-50 chance of dying because it's one of the most dangerous surgerys. How true is this?

Thank you to anyone that can help,
-Tasha

tashalinnxo · Dec 14, 2008

I am 18 years old and back in january was in the ICU, my lungs were bleeding(which has never happend) and I was on a ventelator for about a week. I actually got better real faster, faster than they predicted. I've always done that. But that was the worst I've ever been. My lungs have stayed at around the 55%-67% PFT range. They haven't gone up since january.. I was wondering if anyone can tell me how long should I wait to try for a lung transplant and how bad do I have to be? I feel great right now but my highest PFT's are in the 80's and I haven't had that in a longgg time. Also, a big concern is, I've heard that getting a lung transplant is a 50-50 chance of dying because it's one of the most dangerous surgerys. How true is this?

Thank you to anyone that can help,
-Tasha

tashalinnxo · Dec 14, 2008

I am 18 years old and back in january was in the ICU, my lungs were bleeding(which has never happend) and I was on a ventelator for about a week. I actually got better real faster, faster than they predicted. I've always done that. But that was the worst I've ever been. My lungs have stayed at around the 55%-67% PFT range. They haven't gone up since january.. I was wondering if anyone can tell me how long should I wait to try for a lung transplant and how bad do I have to be? I feel great right now but my highest PFT's are in the 80's and I haven't had that in a longgg time. Also, a big concern is, I've heard that getting a lung transplant is a 50-50 chance of dying because it's one of the most dangerous surgerys. How true is this?
 
 Thank you to anyone that can help,
 -Tasha

Transplantmommy · Dec 14, 2008

Hey there Tasha. From the sounds of it, even though you had a bleed in your lungs, you are still a ways away from transplant (if your lung function and the general function of your body stays well). I was not even considered for transplant evaluations until I was down to and FEV1 of 40 percent. I also had a lot of mucus build up, tons of scarring, holes, and mold in my lungs.

When I had that evaluation, I was told that I was likely too well for transplant at that point and I had had a lot of bleeds that required surgery to stop the bleeding, but I had never had to be on a vent. The first evaluations were in June of 2005 and I wasn't listed until August of 2006....but I did have a pregnancy that I would not terminate, so listing took a little longer for me. I think that I was down to about 20% lung function when I was listed, but if you are sick enough, most transplant centers will list around 30% FEV1.

I hope that you are well and don't worry too much about when you will need a transplant. YOur doctors will tell you when it is time.

Transplantmommy · Dec 14, 2008

Hey there Tasha. From the sounds of it, even though you had a bleed in your lungs, you are still a ways away from transplant (if your lung function and the general function of your body stays well). I was not even considered for transplant evaluations until I was down to and FEV1 of 40 percent. I also had a lot of mucus build up, tons of scarring, holes, and mold in my lungs.

When I had that evaluation, I was told that I was likely too well for transplant at that point and I had had a lot of bleeds that required surgery to stop the bleeding, but I had never had to be on a vent. The first evaluations were in June of 2005 and I wasn't listed until August of 2006....but I did have a pregnancy that I would not terminate, so listing took a little longer for me. I think that I was down to about 20% lung function when I was listed, but if you are sick enough, most transplant centers will list around 30% FEV1.

I hope that you are well and don't worry too much about when you will need a transplant. YOur doctors will tell you when it is time.

Transplantmommy · Dec 14, 2008

Hey there Tasha. From the sounds of it, even though you had a bleed in your lungs, you are still a ways away from transplant (if your lung function and the general function of your body stays well). I was not even considered for transplant evaluations until I was down to and FEV1 of 40 percent. I also had a lot of mucus build up, tons of scarring, holes, and mold in my lungs.

When I had that evaluation, I was told that I was likely too well for transplant at that point and I had had a lot of bleeds that required surgery to stop the bleeding, but I had never had to be on a vent. The first evaluations were in June of 2005 and I wasn't listed until August of 2006....but I did have a pregnancy that I would not terminate, so listing took a little longer for me. I think that I was down to about 20% lung function when I was listed, but if you are sick enough, most transplant centers will list around 30% FEV1.

I hope that you are well and don't worry too much about when you will need a transplant. YOur doctors will tell you when it is time.

Transplantmommy · Dec 14, 2008

Hey there Tasha. From the sounds of it, even though you had a bleed in your lungs, you are still a ways away from transplant (if your lung function and the general function of your body stays well). I was not even considered for transplant evaluations until I was down to and FEV1 of 40 percent. I also had a lot of mucus build up, tons of scarring, holes, and mold in my lungs.

When I had that evaluation, I was told that I was likely too well for transplant at that point and I had had a lot of bleeds that required surgery to stop the bleeding, but I had never had to be on a vent. The first evaluations were in June of 2005 and I wasn't listed until August of 2006....but I did have a pregnancy that I would not terminate, so listing took a little longer for me. I think that I was down to about 20% lung function when I was listed, but if you are sick enough, most transplant centers will list around 30% FEV1.

I hope that you are well and don't worry too much about when you will need a transplant. YOur doctors will tell you when it is time.

Transplantmommy · Dec 14, 2008

Hey there Tasha. From the sounds of it, even though you had a bleed in your lungs, you are still a ways away from transplant (if your lung function and the general function of your body stays well). I was not even considered for transplant evaluations until I was down to and FEV1 of 40 percent. I also had a lot of mucus build up, tons of scarring, holes, and mold in my lungs.
 
 When I had that evaluation, I was told that I was likely too well for transplant at that point and I had had a lot of bleeds that required surgery to stop the bleeding, but I had never had to be on a vent. The first evaluations were in June of 2005 and I wasn't listed until August of 2006....but I did have a pregnancy that I would not terminate, so listing took a little longer for me. I think that I was down to about 20% lung function when I was listed, but if you are sick enough, most transplant centers will list around 30% FEV1.
 
 I hope that you are well and don't worry too much about when you will need a transplant. YOur doctors will tell you when it is time.

NYCLawGirl · Dec 14, 2008

Agree with Patti. I was recommended for evaluation when my PFTs were consistently in the low 40s or upper 30s. Depending on your individual situation your doctor might recommend you earlier - if, for example, you are prone to severe infections or if you've lost a lot of lung function in a short period. I was recommended "early" at 40% because my weight is low and I get Psuedo exacerbations about every two months. But I have never heard of anyone being evaluated with PFTs in the 50s or 60s. I'm not saying it's impossible though. If you're concerned or have questions about whether transplant might be an option for you (now or in the future), you should have a really frank discussion with your doctor.

I have never heard the 50/50 survival rate, but I highly doubt it's correct. For one thing, my center has a 1 year survival rate of over 80%, which means that 50% of their patients are NOT dying in or right after surgery. Someone very familiar with lung transplant (in the medical field) recently told me not to worry b/c quote: "no one dies on the table."

NYCLawGirl · Dec 14, 2008

Agree with Patti. I was recommended for evaluation when my PFTs were consistently in the low 40s or upper 30s. Depending on your individual situation your doctor might recommend you earlier - if, for example, you are prone to severe infections or if you've lost a lot of lung function in a short period. I was recommended "early" at 40% because my weight is low and I get Psuedo exacerbations about every two months. But I have never heard of anyone being evaluated with PFTs in the 50s or 60s. I'm not saying it's impossible though. If you're concerned or have questions about whether transplant might be an option for you (now or in the future), you should have a really frank discussion with your doctor.

I have never heard the 50/50 survival rate, but I highly doubt it's correct. For one thing, my center has a 1 year survival rate of over 80%, which means that 50% of their patients are NOT dying in or right after surgery. Someone very familiar with lung transplant (in the medical field) recently told me not to worry b/c quote: "no one dies on the table."

NYCLawGirl · Dec 14, 2008

Agree with Patti. I was recommended for evaluation when my PFTs were consistently in the low 40s or upper 30s. Depending on your individual situation your doctor might recommend you earlier - if, for example, you are prone to severe infections or if you've lost a lot of lung function in a short period. I was recommended "early" at 40% because my weight is low and I get Psuedo exacerbations about every two months. But I have never heard of anyone being evaluated with PFTs in the 50s or 60s. I'm not saying it's impossible though. If you're concerned or have questions about whether transplant might be an option for you (now or in the future), you should have a really frank discussion with your doctor.

I have never heard the 50/50 survival rate, but I highly doubt it's correct. For one thing, my center has a 1 year survival rate of over 80%, which means that 50% of their patients are NOT dying in or right after surgery. Someone very familiar with lung transplant (in the medical field) recently told me not to worry b/c quote: "no one dies on the table."

NYCLawGirl · Dec 14, 2008

Agree with Patti. I was recommended for evaluation when my PFTs were consistently in the low 40s or upper 30s. Depending on your individual situation your doctor might recommend you earlier - if, for example, you are prone to severe infections or if you've lost a lot of lung function in a short period. I was recommended "early" at 40% because my weight is low and I get Psuedo exacerbations about every two months. But I have never heard of anyone being evaluated with PFTs in the 50s or 60s. I'm not saying it's impossible though. If you're concerned or have questions about whether transplant might be an option for you (now or in the future), you should have a really frank discussion with your doctor.

I have never heard the 50/50 survival rate, but I highly doubt it's correct. For one thing, my center has a 1 year survival rate of over 80%, which means that 50% of their patients are NOT dying in or right after surgery. Someone very familiar with lung transplant (in the medical field) recently told me not to worry b/c quote: "no one dies on the table."

NYCLawGirl · Dec 14, 2008

Agree with Patti. I was recommended for evaluation when my PFTs were consistently in the low 40s or upper 30s. Depending on your individual situation your doctor might recommend you earlier - if, for example, you are prone to severe infections or if you've lost a lot of lung function in a short period. I was recommended "early" at 40% because my weight is low and I get Psuedo exacerbations about every two months. But I have never heard of anyone being evaluated with PFTs in the 50s or 60s. I'm not saying it's impossible though. If you're concerned or have questions about whether transplant might be an option for you (now or in the future), you should have a really frank discussion with your doctor.
 
 I have never heard the 50/50 survival rate, but I highly doubt it's correct. For one thing, my center has a 1 year survival rate of over 80%, which means that 50% of their patients are NOT dying in or right after surgery. Someone very familiar with lung transplant (in the medical field) recently told me not to worry b/c quote: "no one dies on the table."

tashalinnxo · Dec 15, 2008

Thank you both for your replys. It helps me understand alot better. I just need to stop worrying so much! I just have it in my head that once I do get that sick that I won't have enough time to get a lung transplant and I'll die. Things I need to work on I guess... But thank you both! And Patti, I wouldn't terminate my pregnancy either.. I've actually been trying to have a child, my fiance and i.. I feel like I should now because I may never get the chance if I ever get too sick. My doctor is highly against in right now but I know what I want.

thanks!

tashalinnxo · Dec 15, 2008

Thank you both for your replys. It helps me understand alot better. I just need to stop worrying so much! I just have it in my head that once I do get that sick that I won't have enough time to get a lung transplant and I'll die. Things I need to work on I guess... But thank you both! And Patti, I wouldn't terminate my pregnancy either.. I've actually been trying to have a child, my fiance and i.. I feel like I should now because I may never get the chance if I ever get too sick. My doctor is highly against in right now but I know what I want.

thanks!

tashalinnxo · Dec 15, 2008

Thank you both for your replys. It helps me understand alot better. I just need to stop worrying so much! I just have it in my head that once I do get that sick that I won't have enough time to get a lung transplant and I'll die. Things I need to work on I guess... But thank you both! And Patti, I wouldn't terminate my pregnancy either.. I've actually been trying to have a child, my fiance and i.. I feel like I should now because I may never get the chance if I ever get too sick. My doctor is highly against in right now but I know what I want.

thanks!

tashalinnxo · Dec 15, 2008

Thank you both for your replys. It helps me understand alot better. I just need to stop worrying so much! I just have it in my head that once I do get that sick that I won't have enough time to get a lung transplant and I'll die. Things I need to work on I guess... But thank you both! And Patti, I wouldn't terminate my pregnancy either.. I've actually been trying to have a child, my fiance and i.. I feel like I should now because I may never get the chance if I ever get too sick. My doctor is highly against in right now but I know what I want.

thanks!

tashalinnxo · Dec 15, 2008

Thank you both for your replys. It helps me understand alot better. I just need to stop worrying so much! I just have it in my head that once I do get that sick that I won't have enough time to get a lung transplant and I'll die. Things I need to work on I guess... But thank you both! And Patti, I wouldn't terminate my pregnancy either.. I've actually been trying to have a child, my fiance and i.. I feel like I should now because I may never get the chance if I ever get too sick. My doctor is highly against in right now but I know what I want.
 
 thanks!

when should I think about a lung transplant?

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