Can i have some help?

littlehelen · Jul 9, 2008

hey!!
i havent been on here for ages!!

i would be really greatfull if anyone that has had any experience with transplants could tell me how they felt when they were told that they need one? and what its like if you have had one please help.

Little Helen

littlehelen · Jul 9, 2008

hey!!
i havent been on here for ages!!

i would be really greatfull if anyone that has had any experience with transplants could tell me how they felt when they were told that they need one? and what its like if you have had one please help.

Little Helen

littlehelen · Jul 9, 2008

hey!!
i havent been on here for ages!!

i would be really greatfull if anyone that has had any experience with transplants could tell me how they felt when they were told that they need one? and what its like if you have had one please help.

Little Helen

littlehelen · Jul 9, 2008

hey!!
i havent been on here for ages!!

i would be really greatfull if anyone that has had any experience with transplants could tell me how they felt when they were told that they need one? and what its like if you have had one please help.

Little Helen

littlehelen · Jul 9, 2008

hey!!
 i havent been on here for ages!!
 
 i would be really greatfull if anyone that has had any experience with transplants could tell me how they felt when they were told that they need one? and what its like if you have had one please help.
 
 Little Helen

cupcakesmom2 · Jul 11, 2008

hey, i was 23% when they first told me. But I put it off, I was scared and figured someone younger deserved them(i'm 37). But i have 2 girls and they needed me so much. So I got on the list at 14% got them in 10 months(in the nick of time) they think i had maybe a week left. I'm four months out now and i'm so greatful. The meds are nothing, i took as much or more before. Being able to breath is a miracle. I was home from the hospital in 10 days. Alot of pain at first but they are great about covering you. Don't wait as long as I did, the sooner you do it the sooner you can start your new life...good luck...Jennifer

cupcakesmom2 · Jul 11, 2008

hey, i was 23% when they first told me. But I put it off, I was scared and figured someone younger deserved them(i'm 37). But i have 2 girls and they needed me so much. So I got on the list at 14% got them in 10 months(in the nick of time) they think i had maybe a week left. I'm four months out now and i'm so greatful. The meds are nothing, i took as much or more before. Being able to breath is a miracle. I was home from the hospital in 10 days. Alot of pain at first but they are great about covering you. Don't wait as long as I did, the sooner you do it the sooner you can start your new life...good luck...Jennifer

cupcakesmom2 · Jul 11, 2008

hey, i was 23% when they first told me. But I put it off, I was scared and figured someone younger deserved them(i'm 37). But i have 2 girls and they needed me so much. So I got on the list at 14% got them in 10 months(in the nick of time) they think i had maybe a week left. I'm four months out now and i'm so greatful. The meds are nothing, i took as much or more before. Being able to breath is a miracle. I was home from the hospital in 10 days. Alot of pain at first but they are great about covering you. Don't wait as long as I did, the sooner you do it the sooner you can start your new life...good luck...Jennifer

cupcakesmom2 · Jul 11, 2008

hey, i was 23% when they first told me. But I put it off, I was scared and figured someone younger deserved them(i'm 37). But i have 2 girls and they needed me so much. So I got on the list at 14% got them in 10 months(in the nick of time) they think i had maybe a week left. I'm four months out now and i'm so greatful. The meds are nothing, i took as much or more before. Being able to breath is a miracle. I was home from the hospital in 10 days. Alot of pain at first but they are great about covering you. Don't wait as long as I did, the sooner you do it the sooner you can start your new life...good luck...Jennifer

cupcakesmom2 · Jul 11, 2008

hey, i was 23% when they first told me. But I put it off, I was scared and figured someone younger deserved them(i'm 37). But i have 2 girls and they needed me so much. So I got on the list at 14% got them in 10 months(in the nick of time) they think i had maybe a week left. I'm four months out now and i'm so greatful. The meds are nothing, i took as much or more before. Being able to breath is a miracle. I was home from the hospital in 10 days. Alot of pain at first but they are great about covering you. Don't wait as long as I did, the sooner you do it the sooner you can start your new life...good luck...Jennifer

coltsfan715 · Jul 13, 2008

I was upset when I thought I may need a transplant but I asked about it no one brought it up to me. I went to my first appointment at the transplant center kind of hoping that they would tell me I was too healthy.

When they told me I needed to be listed I remember kind of shutting down. I think I cried for like 5 minutes after the appointment and then I just went blank. I remember the appointment but at the same time I felt like I wasn't really there almost like I was watching it on TV.

A few days after they told me I was needing to be listed I remember I was getting cleaned up or something and I just started crying and having an anxiety attack. I couldn't stop crying and didn't understand why. I just cried for literally hours. I went through some depression type stuff for a few weeks before and after being listed and then just seemed to snap out of it a few weeks before I was transplanted - I waited about 6 weeks for my transplant.

I am just about 14 months out now and have had a relatively problem free recovery. I am just now experiencing my first real issue and it isn't really even an issue to me - it seems to me that other people around me are having more of a time about it than I am (I was just told I have an active CMV infection - but practically without symptoms and am now taking meds for it).

To me there is no comparison to my life now and what it was before. Yes there are a lot of meds but seriously I took alot of meds pre transplant. I think I take about the same amount now - the only difference is THESE meds are pills. It takes me maybe 5 minutes a day to take my meds I do not do aerosols or CPT and have not since I was 1 week post transplant. I have a whole heck of a lot more time righ tnow than I used too. It is just something that to me I would do again tomorrow if I needed it because to me it has been worth it.

I think though it is a very personal decision and you need to decide what is right for you. I would look at this time (the time right after being told you may need a transplant) as time to gather information. Get the information that YOU feel YOU need to make the right deicision for you.

For me I got information and honestly NONE of the info that I got helped me make my decision. My fiance asked me if going through all of it would be worth it if I only lived 6 months post. I thought about it and told him if I only got 1 absolutely amazing day free of hacking coughing and actually being able to breathe it would be worth it. So I decided I would do it - but that doesn't work for everyone so you make the decision that is best for you because you are the one that has to be committed to it not your family and not your friends YOU.

Best of Luck
Lindsey

coltsfan715 · Jul 13, 2008

I was upset when I thought I may need a transplant but I asked about it no one brought it up to me. I went to my first appointment at the transplant center kind of hoping that they would tell me I was too healthy.

When they told me I needed to be listed I remember kind of shutting down. I think I cried for like 5 minutes after the appointment and then I just went blank. I remember the appointment but at the same time I felt like I wasn't really there almost like I was watching it on TV.

A few days after they told me I was needing to be listed I remember I was getting cleaned up or something and I just started crying and having an anxiety attack. I couldn't stop crying and didn't understand why. I just cried for literally hours. I went through some depression type stuff for a few weeks before and after being listed and then just seemed to snap out of it a few weeks before I was transplanted - I waited about 6 weeks for my transplant.

I am just about 14 months out now and have had a relatively problem free recovery. I am just now experiencing my first real issue and it isn't really even an issue to me - it seems to me that other people around me are having more of a time about it than I am (I was just told I have an active CMV infection - but practically without symptoms and am now taking meds for it).

To me there is no comparison to my life now and what it was before. Yes there are a lot of meds but seriously I took alot of meds pre transplant. I think I take about the same amount now - the only difference is THESE meds are pills. It takes me maybe 5 minutes a day to take my meds I do not do aerosols or CPT and have not since I was 1 week post transplant. I have a whole heck of a lot more time righ tnow than I used too. It is just something that to me I would do again tomorrow if I needed it because to me it has been worth it.

I think though it is a very personal decision and you need to decide what is right for you. I would look at this time (the time right after being told you may need a transplant) as time to gather information. Get the information that YOU feel YOU need to make the right deicision for you.

For me I got information and honestly NONE of the info that I got helped me make my decision. My fiance asked me if going through all of it would be worth it if I only lived 6 months post. I thought about it and told him if I only got 1 absolutely amazing day free of hacking coughing and actually being able to breathe it would be worth it. So I decided I would do it - but that doesn't work for everyone so you make the decision that is best for you because you are the one that has to be committed to it not your family and not your friends YOU.

Best of Luck
Lindsey

coltsfan715 · Jul 13, 2008

I was upset when I thought I may need a transplant but I asked about it no one brought it up to me. I went to my first appointment at the transplant center kind of hoping that they would tell me I was too healthy.

When they told me I needed to be listed I remember kind of shutting down. I think I cried for like 5 minutes after the appointment and then I just went blank. I remember the appointment but at the same time I felt like I wasn't really there almost like I was watching it on TV.

A few days after they told me I was needing to be listed I remember I was getting cleaned up or something and I just started crying and having an anxiety attack. I couldn't stop crying and didn't understand why. I just cried for literally hours. I went through some depression type stuff for a few weeks before and after being listed and then just seemed to snap out of it a few weeks before I was transplanted - I waited about 6 weeks for my transplant.

I am just about 14 months out now and have had a relatively problem free recovery. I am just now experiencing my first real issue and it isn't really even an issue to me - it seems to me that other people around me are having more of a time about it than I am (I was just told I have an active CMV infection - but practically without symptoms and am now taking meds for it).

To me there is no comparison to my life now and what it was before. Yes there are a lot of meds but seriously I took alot of meds pre transplant. I think I take about the same amount now - the only difference is THESE meds are pills. It takes me maybe 5 minutes a day to take my meds I do not do aerosols or CPT and have not since I was 1 week post transplant. I have a whole heck of a lot more time righ tnow than I used too. It is just something that to me I would do again tomorrow if I needed it because to me it has been worth it.

I think though it is a very personal decision and you need to decide what is right for you. I would look at this time (the time right after being told you may need a transplant) as time to gather information. Get the information that YOU feel YOU need to make the right deicision for you.

For me I got information and honestly NONE of the info that I got helped me make my decision. My fiance asked me if going through all of it would be worth it if I only lived 6 months post. I thought about it and told him if I only got 1 absolutely amazing day free of hacking coughing and actually being able to breathe it would be worth it. So I decided I would do it - but that doesn't work for everyone so you make the decision that is best for you because you are the one that has to be committed to it not your family and not your friends YOU.

Best of Luck
Lindsey

coltsfan715 · Jul 13, 2008

I was upset when I thought I may need a transplant but I asked about it no one brought it up to me. I went to my first appointment at the transplant center kind of hoping that they would tell me I was too healthy.

When they told me I needed to be listed I remember kind of shutting down. I think I cried for like 5 minutes after the appointment and then I just went blank. I remember the appointment but at the same time I felt like I wasn't really there almost like I was watching it on TV.

A few days after they told me I was needing to be listed I remember I was getting cleaned up or something and I just started crying and having an anxiety attack. I couldn't stop crying and didn't understand why. I just cried for literally hours. I went through some depression type stuff for a few weeks before and after being listed and then just seemed to snap out of it a few weeks before I was transplanted - I waited about 6 weeks for my transplant.

I am just about 14 months out now and have had a relatively problem free recovery. I am just now experiencing my first real issue and it isn't really even an issue to me - it seems to me that other people around me are having more of a time about it than I am (I was just told I have an active CMV infection - but practically without symptoms and am now taking meds for it).

To me there is no comparison to my life now and what it was before. Yes there are a lot of meds but seriously I took alot of meds pre transplant. I think I take about the same amount now - the only difference is THESE meds are pills. It takes me maybe 5 minutes a day to take my meds I do not do aerosols or CPT and have not since I was 1 week post transplant. I have a whole heck of a lot more time righ tnow than I used too. It is just something that to me I would do again tomorrow if I needed it because to me it has been worth it.

I think though it is a very personal decision and you need to decide what is right for you. I would look at this time (the time right after being told you may need a transplant) as time to gather information. Get the information that YOU feel YOU need to make the right deicision for you.

For me I got information and honestly NONE of the info that I got helped me make my decision. My fiance asked me if going through all of it would be worth it if I only lived 6 months post. I thought about it and told him if I only got 1 absolutely amazing day free of hacking coughing and actually being able to breathe it would be worth it. So I decided I would do it - but that doesn't work for everyone so you make the decision that is best for you because you are the one that has to be committed to it not your family and not your friends YOU.

Best of Luck
Lindsey

coltsfan715 · Jul 13, 2008

I was upset when I thought I may need a transplant but I asked about it no one brought it up to me. I went to my first appointment at the transplant center kind of hoping that they would tell me I was too healthy.
 
 When they told me I needed to be listed I remember kind of shutting down. I think I cried for like 5 minutes after the appointment and then I just went blank. I remember the appointment but at the same time I felt like I wasn't really there almost like I was watching it on TV.
 
 A few days after they told me I was needing to be listed I remember I was getting cleaned up or something and I just started crying and having an anxiety attack. I couldn't stop crying and didn't understand why. I just cried for literally hours. I went through some depression type stuff for a few weeks before and after being listed and then just seemed to snap out of it a few weeks before I was transplanted - I waited about 6 weeks for my transplant.
 
 I am just about 14 months out now and have had a relatively problem free recovery. I am just now experiencing my first real issue and it isn't really even an issue to me - it seems to me that other people around me are having more of a time about it than I am (I was just told I have an active CMV infection - but practically without symptoms and am now taking meds for it).
 
 To me there is no comparison to my life now and what it was before. Yes there are a lot of meds but seriously I took alot of meds pre transplant. I think I take about the same amount now - the only difference is THESE meds are pills. It takes me maybe 5 minutes a day to take my meds I do not do aerosols or CPT and have not since I was 1 week post transplant. I have a whole heck of a lot more time righ tnow than I used too. It is just something that to me I would do again tomorrow if I needed it because to me it has been worth it.
 
 I think though it is a very personal decision and you need to decide what is right for you. I would look at this time (the time right after being told you may need a transplant) as time to gather information. Get the information that YOU feel YOU need to make the right deicision for you.
 
 For me I got information and honestly NONE of the info that I got helped me make my decision. My fiance asked me if going through all of it would be worth it if I only lived 6 months post. I thought about it and told him if I only got 1 absolutely amazing day free of hacking coughing and actually being able to breathe it would be worth it. So I decided I would do it - but that doesn't work for everyone so you make the decision that is best for you because you are the one that has to be committed to it not your family and not your friends YOU.
 
 Best of Luck
 Lindsey

NYCLawGirl · Jul 13, 2008

Hi Helen. I just got told in January that I needed to be evaluated for tx and began the process this summer. So far I have only had the initial consult (I go in for the full medical evaluation at the end of July), but I am right in the middle of that period after being told that tx is the next step. It's weird - I was freaking out about it before but now I kind of feel at peace with the whole idea. My CF has progressed to the point where the bad days outnumber the good, and the bad ones are BAD. I realize that tx isn't so much a "cure" as a trade-off (one set of problems and risks for another), but since I have started to feel like CF is literally defining my life, I am ready to make the trade. And I feel a lot like Lindsay described, in that if I could just get a day of real breathing and being able to live my life the way I have always loved, I would consider that worth it.

My PFTs are still a little on the high side for tx, but I also have a history of pretty severe drop-offs, so my doctors aren't sure when they will list me. Good luck with your process. It's definitely emotional but I also feel like I have learned a lot about myself - and I'm still just beginning!

NYCLawGirl · Jul 13, 2008

Hi Helen. I just got told in January that I needed to be evaluated for tx and began the process this summer. So far I have only had the initial consult (I go in for the full medical evaluation at the end of July), but I am right in the middle of that period after being told that tx is the next step. It's weird - I was freaking out about it before but now I kind of feel at peace with the whole idea. My CF has progressed to the point where the bad days outnumber the good, and the bad ones are BAD. I realize that tx isn't so much a "cure" as a trade-off (one set of problems and risks for another), but since I have started to feel like CF is literally defining my life, I am ready to make the trade. And I feel a lot like Lindsay described, in that if I could just get a day of real breathing and being able to live my life the way I have always loved, I would consider that worth it.

My PFTs are still a little on the high side for tx, but I also have a history of pretty severe drop-offs, so my doctors aren't sure when they will list me. Good luck with your process. It's definitely emotional but I also feel like I have learned a lot about myself - and I'm still just beginning!

NYCLawGirl · Jul 13, 2008

Hi Helen. I just got told in January that I needed to be evaluated for tx and began the process this summer. So far I have only had the initial consult (I go in for the full medical evaluation at the end of July), but I am right in the middle of that period after being told that tx is the next step. It's weird - I was freaking out about it before but now I kind of feel at peace with the whole idea. My CF has progressed to the point where the bad days outnumber the good, and the bad ones are BAD. I realize that tx isn't so much a "cure" as a trade-off (one set of problems and risks for another), but since I have started to feel like CF is literally defining my life, I am ready to make the trade. And I feel a lot like Lindsay described, in that if I could just get a day of real breathing and being able to live my life the way I have always loved, I would consider that worth it.

My PFTs are still a little on the high side for tx, but I also have a history of pretty severe drop-offs, so my doctors aren't sure when they will list me. Good luck with your process. It's definitely emotional but I also feel like I have learned a lot about myself - and I'm still just beginning!

NYCLawGirl · Jul 13, 2008

Hi Helen. I just got told in January that I needed to be evaluated for tx and began the process this summer. So far I have only had the initial consult (I go in for the full medical evaluation at the end of July), but I am right in the middle of that period after being told that tx is the next step. It's weird - I was freaking out about it before but now I kind of feel at peace with the whole idea. My CF has progressed to the point where the bad days outnumber the good, and the bad ones are BAD. I realize that tx isn't so much a "cure" as a trade-off (one set of problems and risks for another), but since I have started to feel like CF is literally defining my life, I am ready to make the trade. And I feel a lot like Lindsay described, in that if I could just get a day of real breathing and being able to live my life the way I have always loved, I would consider that worth it.

My PFTs are still a little on the high side for tx, but I also have a history of pretty severe drop-offs, so my doctors aren't sure when they will list me. Good luck with your process. It's definitely emotional but I also feel like I have learned a lot about myself - and I'm still just beginning!

NYCLawGirl · Jul 13, 2008

Hi Helen. I just got told in January that I needed to be evaluated for tx and began the process this summer. So far I have only had the initial consult (I go in for the full medical evaluation at the end of July), but I am right in the middle of that period after being told that tx is the next step. It's weird - I was freaking out about it before but now I kind of feel at peace with the whole idea. My CF has progressed to the point where the bad days outnumber the good, and the bad ones are BAD. I realize that tx isn't so much a "cure" as a trade-off (one set of problems and risks for another), but since I have started to feel like CF is literally defining my life, I am ready to make the trade. And I feel a lot like Lindsay described, in that if I could just get a day of real breathing and being able to live my life the way I have always loved, I would consider that worth it.
 
 My PFTs are still a little on the high side for tx, but I also have a history of pretty severe drop-offs, so my doctors aren't sure when they will list me. Good luck with your process. It's definitely emotional but I also feel like I have learned a lot about myself - and I'm still just beginning!

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