unsure if ready for TX

TwistedTanya · Jan 7, 2009

My doctor has been constantly on me about getting a lung transplant but part of me feels like I'm not ready. He's concerned about me waiting too long and getting too sick to get it done. I feel like I still have some time to spare. I'm not on oxygen full time. I wear it at night and once in a while if I'm having a bad day I will wear it during the day. I do get worn out easily and don't have a lot of energy. I have a lot of low grade fevers and headaches. However, I have started the Aztreonam inhaled antibiotic and feel great when I'm on it. When I'm off it, I go down hill though. Currently there is nothing else I can take except an IV med. I am slao on Colistin full time. My 02 saturation is usually around 94% resting and my FEV1% is around 25-30%. Seems like most people are down to 20% or lower when they get TX so I feel like I still have more time before I need to go through it. The center I go to has a waiting average of 3 months. I just feel that's too soon. Am I just in denial or am thinking right in probably having a little more time before I really need the TX? I read about people being happy when they get the call and I feel like I would be scared and not wanting to go get the TX if I was called. I feel like when I really need the TX I will be wanting it and be looking forward to it. Just don't feel I'm there yet. But, my doctor keeps pushing it on me. I'm so confused as to what to do. I do usually have to be hospitalized once a year and maybe do home IV's 1 or 2 times a year. I'd like to hear everyone's feedback b/c I am so conflicted and need some guidence.
Thanks
Tanya<img src="i/expressions/face-icon-small-confused.gif" border="0">

TwistedTanya · Jan 7, 2009

My doctor has been constantly on me about getting a lung transplant but part of me feels like I'm not ready. He's concerned about me waiting too long and getting too sick to get it done. I feel like I still have some time to spare. I'm not on oxygen full time. I wear it at night and once in a while if I'm having a bad day I will wear it during the day. I do get worn out easily and don't have a lot of energy. I have a lot of low grade fevers and headaches. However, I have started the Aztreonam inhaled antibiotic and feel great when I'm on it. When I'm off it, I go down hill though. Currently there is nothing else I can take except an IV med. I am slao on Colistin full time. My 02 saturation is usually around 94% resting and my FEV1% is around 25-30%. Seems like most people are down to 20% or lower when they get TX so I feel like I still have more time before I need to go through it. The center I go to has a waiting average of 3 months. I just feel that's too soon. Am I just in denial or am thinking right in probably having a little more time before I really need the TX? I read about people being happy when they get the call and I feel like I would be scared and not wanting to go get the TX if I was called. I feel like when I really need the TX I will be wanting it and be looking forward to it. Just don't feel I'm there yet. But, my doctor keeps pushing it on me. I'm so confused as to what to do. I do usually have to be hospitalized once a year and maybe do home IV's 1 or 2 times a year. I'd like to hear everyone's feedback b/c I am so conflicted and need some guidence.
Thanks
Tanya<img src="i/expressions/face-icon-small-confused.gif" border="0">

TwistedTanya · Jan 7, 2009

My doctor has been constantly on me about getting a lung transplant but part of me feels like I'm not ready. He's concerned about me waiting too long and getting too sick to get it done. I feel like I still have some time to spare. I'm not on oxygen full time. I wear it at night and once in a while if I'm having a bad day I will wear it during the day. I do get worn out easily and don't have a lot of energy. I have a lot of low grade fevers and headaches. However, I have started the Aztreonam inhaled antibiotic and feel great when I'm on it. When I'm off it, I go down hill though. Currently there is nothing else I can take except an IV med. I am slao on Colistin full time. My 02 saturation is usually around 94% resting and my FEV1% is around 25-30%. Seems like most people are down to 20% or lower when they get TX so I feel like I still have more time before I need to go through it. The center I go to has a waiting average of 3 months. I just feel that's too soon. Am I just in denial or am thinking right in probably having a little more time before I really need the TX? I read about people being happy when they get the call and I feel like I would be scared and not wanting to go get the TX if I was called. I feel like when I really need the TX I will be wanting it and be looking forward to it. Just don't feel I'm there yet. But, my doctor keeps pushing it on me. I'm so confused as to what to do. I do usually have to be hospitalized once a year and maybe do home IV's 1 or 2 times a year. I'd like to hear everyone's feedback b/c I am so conflicted and need some guidence.
Thanks
Tanya<img src="i/expressions/face-icon-small-confused.gif" border="0">

TwistedTanya · Jan 7, 2009

My doctor has been constantly on me about getting a lung transplant but part of me feels like I'm not ready. He's concerned about me waiting too long and getting too sick to get it done. I feel like I still have some time to spare. I'm not on oxygen full time. I wear it at night and once in a while if I'm having a bad day I will wear it during the day. I do get worn out easily and don't have a lot of energy. I have a lot of low grade fevers and headaches. However, I have started the Aztreonam inhaled antibiotic and feel great when I'm on it. When I'm off it, I go down hill though. Currently there is nothing else I can take except an IV med. I am slao on Colistin full time. My 02 saturation is usually around 94% resting and my FEV1% is around 25-30%. Seems like most people are down to 20% or lower when they get TX so I feel like I still have more time before I need to go through it. The center I go to has a waiting average of 3 months. I just feel that's too soon. Am I just in denial or am thinking right in probably having a little more time before I really need the TX? I read about people being happy when they get the call and I feel like I would be scared and not wanting to go get the TX if I was called. I feel like when I really need the TX I will be wanting it and be looking forward to it. Just don't feel I'm there yet. But, my doctor keeps pushing it on me. I'm so confused as to what to do. I do usually have to be hospitalized once a year and maybe do home IV's 1 or 2 times a year. I'd like to hear everyone's feedback b/c I am so conflicted and need some guidence.
Thanks
Tanya<img src="i/expressions/face-icon-small-confused.gif" border="0">

TwistedTanya · Jan 7, 2009

My doctor has been constantly on me about getting a lung transplant but part of me feels like I'm not ready. He's concerned about me waiting too long and getting too sick to get it done. I feel like I still have some time to spare. I'm not on oxygen full time. I wear it at night and once in a while if I'm having a bad day I will wear it during the day. I do get worn out easily and don't have a lot of energy. I have a lot of low grade fevers and headaches. However, I have started the Aztreonam inhaled antibiotic and feel great when I'm on it. When I'm off it, I go down hill though. Currently there is nothing else I can take except an IV med. I am slao on Colistin full time. My 02 saturation is usually around 94% resting and my FEV1% is around 25-30%. Seems like most people are down to 20% or lower when they get TX so I feel like I still have more time before I need to go through it. The center I go to has a waiting average of 3 months. I just feel that's too soon. Am I just in denial or am thinking right in probably having a little more time before I really need the TX? I read about people being happy when they get the call and I feel like I would be scared and not wanting to go get the TX if I was called. I feel like when I really need the TX I will be wanting it and be looking forward to it. Just don't feel I'm there yet. But, my doctor keeps pushing it on me. I'm so confused as to what to do. I do usually have to be hospitalized once a year and maybe do home IV's 1 or 2 times a year. I'd like to hear everyone's feedback b/c I am so conflicted and need some guidence.
 Thanks
 Tanya<img src="i/expressions/face-icon-small-confused.gif" border="0">

Transplantmommy · Jan 7, 2009

Hi Tanya. I was referred for a transplant when I had an FEV1 of 40% and my O2 sats were still about where yours are. I too was only on O2 at night and later went on it full time. I started my evaluations in June 2005, continued them in July, and then found out that I was pregnant so I stopped the evaluations and testing. I went 33 weeks with the pregnancy and I went back to the evaluations in March of 2006 (2 months after the baby was born) and I still was not listed until August because of all of the testing and evaluations that needed to be completed.

There are a lot of tests that you have to go through before you get listed and depending on the ones that you need, it could take a while to get listed for the transplant. In the meantime, you could continue to decrease in lung function, and like your doctor has told you, become too sick for the transplant...your opportunity gone. Your FEV1 is low and if your energy is not great, it will be even worse if you don't think about your options now. It is best to go into the transplant when you are as strong as possible. They often say "If you walk into the transplant, you will walk out." Meaning, if you go into the transplant really weak, it will take longer for you to get better.

I think that I was listed when I was roughly at an FEV1 of about 25% or so and by the time that I got my transplants (double lung and liver) in January 2007, I was at an FEV1 of 15 percent. That's a 10% drop in 5 months and it was not fun. I tried to stay as active as I could, which was harder that I could imagine, but I really did walk into the OR and 5 days after the transplant I was walking on the transplant floor and no one could stop me! I was out of the hospital in 12 days and home only 4 1/2 weeks after the transplants.

Basically what I am saying here is that you should really at least go for the evaluations and see what the transplant doctors say. Sure I trusted my CF doc, but it was information overload when I went for the evaluations. I learned things that my CF doctor could not tell me. Just because you go for the evaluations does not mean that you are going to be listed right away. You can still decide when you are ready....you just will know more about your options.

Transplantmommy · Jan 7, 2009

Hi Tanya. I was referred for a transplant when I had an FEV1 of 40% and my O2 sats were still about where yours are. I too was only on O2 at night and later went on it full time. I started my evaluations in June 2005, continued them in July, and then found out that I was pregnant so I stopped the evaluations and testing. I went 33 weeks with the pregnancy and I went back to the evaluations in March of 2006 (2 months after the baby was born) and I still was not listed until August because of all of the testing and evaluations that needed to be completed.

There are a lot of tests that you have to go through before you get listed and depending on the ones that you need, it could take a while to get listed for the transplant. In the meantime, you could continue to decrease in lung function, and like your doctor has told you, become too sick for the transplant...your opportunity gone. Your FEV1 is low and if your energy is not great, it will be even worse if you don't think about your options now. It is best to go into the transplant when you are as strong as possible. They often say "If you walk into the transplant, you will walk out." Meaning, if you go into the transplant really weak, it will take longer for you to get better.

I think that I was listed when I was roughly at an FEV1 of about 25% or so and by the time that I got my transplants (double lung and liver) in January 2007, I was at an FEV1 of 15 percent. That's a 10% drop in 5 months and it was not fun. I tried to stay as active as I could, which was harder that I could imagine, but I really did walk into the OR and 5 days after the transplant I was walking on the transplant floor and no one could stop me! I was out of the hospital in 12 days and home only 4 1/2 weeks after the transplants.

Basically what I am saying here is that you should really at least go for the evaluations and see what the transplant doctors say. Sure I trusted my CF doc, but it was information overload when I went for the evaluations. I learned things that my CF doctor could not tell me. Just because you go for the evaluations does not mean that you are going to be listed right away. You can still decide when you are ready....you just will know more about your options.

Transplantmommy · Jan 7, 2009

Hi Tanya. I was referred for a transplant when I had an FEV1 of 40% and my O2 sats were still about where yours are. I too was only on O2 at night and later went on it full time. I started my evaluations in June 2005, continued them in July, and then found out that I was pregnant so I stopped the evaluations and testing. I went 33 weeks with the pregnancy and I went back to the evaluations in March of 2006 (2 months after the baby was born) and I still was not listed until August because of all of the testing and evaluations that needed to be completed.

There are a lot of tests that you have to go through before you get listed and depending on the ones that you need, it could take a while to get listed for the transplant. In the meantime, you could continue to decrease in lung function, and like your doctor has told you, become too sick for the transplant...your opportunity gone. Your FEV1 is low and if your energy is not great, it will be even worse if you don't think about your options now. It is best to go into the transplant when you are as strong as possible. They often say "If you walk into the transplant, you will walk out." Meaning, if you go into the transplant really weak, it will take longer for you to get better.

I think that I was listed when I was roughly at an FEV1 of about 25% or so and by the time that I got my transplants (double lung and liver) in January 2007, I was at an FEV1 of 15 percent. That's a 10% drop in 5 months and it was not fun. I tried to stay as active as I could, which was harder that I could imagine, but I really did walk into the OR and 5 days after the transplant I was walking on the transplant floor and no one could stop me! I was out of the hospital in 12 days and home only 4 1/2 weeks after the transplants.

Basically what I am saying here is that you should really at least go for the evaluations and see what the transplant doctors say. Sure I trusted my CF doc, but it was information overload when I went for the evaluations. I learned things that my CF doctor could not tell me. Just because you go for the evaluations does not mean that you are going to be listed right away. You can still decide when you are ready....you just will know more about your options.

Transplantmommy · Jan 7, 2009

Hi Tanya. I was referred for a transplant when I had an FEV1 of 40% and my O2 sats were still about where yours are. I too was only on O2 at night and later went on it full time. I started my evaluations in June 2005, continued them in July, and then found out that I was pregnant so I stopped the evaluations and testing. I went 33 weeks with the pregnancy and I went back to the evaluations in March of 2006 (2 months after the baby was born) and I still was not listed until August because of all of the testing and evaluations that needed to be completed.

There are a lot of tests that you have to go through before you get listed and depending on the ones that you need, it could take a while to get listed for the transplant. In the meantime, you could continue to decrease in lung function, and like your doctor has told you, become too sick for the transplant...your opportunity gone. Your FEV1 is low and if your energy is not great, it will be even worse if you don't think about your options now. It is best to go into the transplant when you are as strong as possible. They often say "If you walk into the transplant, you will walk out." Meaning, if you go into the transplant really weak, it will take longer for you to get better.

I think that I was listed when I was roughly at an FEV1 of about 25% or so and by the time that I got my transplants (double lung and liver) in January 2007, I was at an FEV1 of 15 percent. That's a 10% drop in 5 months and it was not fun. I tried to stay as active as I could, which was harder that I could imagine, but I really did walk into the OR and 5 days after the transplant I was walking on the transplant floor and no one could stop me! I was out of the hospital in 12 days and home only 4 1/2 weeks after the transplants.

Basically what I am saying here is that you should really at least go for the evaluations and see what the transplant doctors say. Sure I trusted my CF doc, but it was information overload when I went for the evaluations. I learned things that my CF doctor could not tell me. Just because you go for the evaluations does not mean that you are going to be listed right away. You can still decide when you are ready....you just will know more about your options.

Transplantmommy · Jan 7, 2009

Hi Tanya. I was referred for a transplant when I had an FEV1 of 40% and my O2 sats were still about where yours are. I too was only on O2 at night and later went on it full time. I started my evaluations in June 2005, continued them in July, and then found out that I was pregnant so I stopped the evaluations and testing. I went 33 weeks with the pregnancy and I went back to the evaluations in March of 2006 (2 months after the baby was born) and I still was not listed until August because of all of the testing and evaluations that needed to be completed.
 
 There are a lot of tests that you have to go through before you get listed and depending on the ones that you need, it could take a while to get listed for the transplant. In the meantime, you could continue to decrease in lung function, and like your doctor has told you, become too sick for the transplant...your opportunity gone. Your FEV1 is low and if your energy is not great, it will be even worse if you don't think about your options now. It is best to go into the transplant when you are as strong as possible. They often say "If you walk into the transplant, you will walk out." Meaning, if you go into the transplant really weak, it will take longer for you to get better.
 
 I think that I was listed when I was roughly at an FEV1 of about 25% or so and by the time that I got my transplants (double lung and liver) in January 2007, I was at an FEV1 of 15 percent. That's a 10% drop in 5 months and it was not fun. I tried to stay as active as I could, which was harder that I could imagine, but I really did walk into the OR and 5 days after the transplant I was walking on the transplant floor and no one could stop me! I was out of the hospital in 12 days and home only 4 1/2 weeks after the transplants.
 
 Basically what I am saying here is that you should really at least go for the evaluations and see what the transplant doctors say. Sure I trusted my CF doc, but it was information overload when I went for the evaluations. I learned things that my CF doctor could not tell me. Just because you go for the evaluations does not mean that you are going to be listed right away. You can still decide when you are ready....you just will know more about your options.

Scars · Jan 7, 2009