Aunt to CF'er....questions about partial lung removal

[amyv]

Hi there, I am a first time poster but have been reading this board for a few weeks. I have a 9 year old niece with CF (husband's side of the family; one of her mutations is Delta508 and the other I'm not sure of, a less common one). My husband is a carrier and I am not.
I'm writing because up to about a year ago my niece was doing quite well; her parents were extremely pro-active in her treatments; she's always used the VEST and added new inhaled medicines as they were available. Lately, however, she has gotten a nasty lung infection that nothing can seem to shake. I believe it is a fungal infection (sorry I don't know all the right terms here); but she has been in the hospital for it twice, and the medicines they gave her spiked her blood sugar so now she is on insulin. Also, she has a very high fever and rash all over her body. The latest news today is she will be part of her lung removed tomorrow since it so badly damaged.

I am just wondering if anyone here an comment on this course of treatment. Does it mean she is close to needing a transplant? Or could this help get rid of the infection?

Any answers would be appreciated. She is a sweet little girl and I wish there was some way I could help her and her family.

 

[amyv]

Hi there, I am a first time poster but have been reading this board for a few weeks. I have a 9 year old niece with CF (husband's side of the family; one of her mutations is Delta508 and the other I'm not sure of, a less common one). My husband is a carrier and I am not.
I'm writing because up to about a year ago my niece was doing quite well; her parents were extremely pro-active in her treatments; she's always used the VEST and added new inhaled medicines as they were available. Lately, however, she has gotten a nasty lung infection that nothing can seem to shake. I believe it is a fungal infection (sorry I don't know all the right terms here); but she has been in the hospital for it twice, and the medicines they gave her spiked her blood sugar so now she is on insulin. Also, she has a very high fever and rash all over her body. The latest news today is she will be part of her lung removed tomorrow since it so badly damaged.

I am just wondering if anyone here an comment on this course of treatment. Does it mean she is close to needing a transplant? Or could this help get rid of the infection?

Any answers would be appreciated. She is a sweet little girl and I wish there was some way I could help her and her family.

 

[amyv]

Hi there, I am a first time poster but have been reading this board for a few weeks. I have a 9 year old niece with CF (husband's side of the family; one of her mutations is Delta508 and the other I'm not sure of, a less common one). My husband is a carrier and I am not.
I'm writing because up to about a year ago my niece was doing quite well; her parents were extremely pro-active in her treatments; she's always used the VEST and added new inhaled medicines as they were available. Lately, however, she has gotten a nasty lung infection that nothing can seem to shake. I believe it is a fungal infection (sorry I don't know all the right terms here); but she has been in the hospital for it twice, and the medicines they gave her spiked her blood sugar so now she is on insulin. Also, she has a very high fever and rash all over her body. The latest news today is she will be part of her lung removed tomorrow since it so badly damaged.

I am just wondering if anyone here an comment on this course of treatment. Does it mean she is close to needing a transplant? Or could this help get rid of the infection?

Any answers would be appreciated. She is a sweet little girl and I wish there was some way I could help her and her family.

 

[amyv]

Hi there, I am a first time poster but have been reading this board for a few weeks. I have a 9 year old niece with CF (husband's side of the family; one of her mutations is Delta508 and the other I'm not sure of, a less common one). My husband is a carrier and I am not.
I'm writing because up to about a year ago my niece was doing quite well; her parents were extremely pro-active in her treatments; she's always used the VEST and added new inhaled medicines as they were available. Lately, however, she has gotten a nasty lung infection that nothing can seem to shake. I believe it is a fungal infection (sorry I don't know all the right terms here); but she has been in the hospital for it twice, and the medicines they gave her spiked her blood sugar so now she is on insulin. Also, she has a very high fever and rash all over her body. The latest news today is she will be part of her lung removed tomorrow since it so badly damaged.

I am just wondering if anyone here an comment on this course of treatment. Does it mean she is close to needing a transplant? Or could this help get rid of the infection?

Any answers would be appreciated. She is a sweet little girl and I wish there was some way I could help her and her family.

 

[amyv]

Hi there, I am a first time poster but have been reading this board for a few weeks. I have a 9 year old niece with CF (husband's side of the family; one of her mutations is Delta508 and the other I'm not sure of, a less common one). My husband is a carrier and I am not.
I'm writing because up to about a year ago my niece was doing quite well; her parents were extremely pro-active in her treatments; she's always used the VEST and added new inhaled medicines as they were available. Lately, however, she has gotten a nasty lung infection that nothing can seem to shake. I believe it is a fungal infection (sorry I don't know all the right terms here); but she has been in the hospital for it twice, and the medicines they gave her spiked her blood sugar so now she is on insulin. Also, she has a very high fever and rash all over her body. The latest news today is she will be part of her lung removed tomorrow since it so badly damaged.

I am just wondering if anyone here an comment on this course of treatment. Does it mean she is close to needing a transplant? Or could this help get rid of the infection?

Any answers would be appreciated. She is a sweet little girl and I wish there was some way I could help her and her family.

 

[rotandroll]

I'm sorry I can't answer all of your questions. I am 24 years old, with CF. When I was 14 I had the left lower lobe of my lung removed for reasons similar to your niece's (the lobe was badly infected, not inflating correctly, full of gunk and reinfecting the rest of the healthy lung). The surgery was tough, it took more than eight hours due to complications, and the recovery was terrible-- but I made it through and I am still (hopefully) very far off from the need of a lung transplant. I know not every case is the same, and you should not take my experience as a model for what your niece is going through, but maybe an example that resection of a lung and/or lobe can benefit a patient greatly even if it is a tough recovery. Best of luck to you and yours.

 

[rotandroll]

I'm sorry I can't answer all of your questions. I am 24 years old, with CF. When I was 14 I had the left lower lobe of my lung removed for reasons similar to your niece's (the lobe was badly infected, not inflating correctly, full of gunk and reinfecting the rest of the healthy lung). The surgery was tough, it took more than eight hours due to complications, and the recovery was terrible-- but I made it through and I am still (hopefully) very far off from the need of a lung transplant. I know not every case is the same, and you should not take my experience as a model for what your niece is going through, but maybe an example that resection of a lung and/or lobe can benefit a patient greatly even if it is a tough recovery. Best of luck to you and yours.

 

[rotandroll]

I'm sorry I can't answer all of your questions. I am 24 years old, with CF. When I was 14 I had the left lower lobe of my lung removed for reasons similar to your niece's (the lobe was badly infected, not inflating correctly, full of gunk and reinfecting the rest of the healthy lung). The surgery was tough, it took more than eight hours due to complications, and the recovery was terrible-- but I made it through and I am still (hopefully) very far off from the need of a lung transplant. I know not every case is the same, and you should not take my experience as a model for what your niece is going through, but maybe an example that resection of a lung and/or lobe can benefit a patient greatly even if it is a tough recovery. Best of luck to you and yours.

 

[rotandroll]

I'm sorry I can't answer all of your questions. I am 24 years old, with CF. When I was 14 I had the left lower lobe of my lung removed for reasons similar to your niece's (the lobe was badly infected, not inflating correctly, full of gunk and reinfecting the rest of the healthy lung). The surgery was tough, it took more than eight hours due to complications, and the recovery was terrible-- but I made it through and I am still (hopefully) very far off from the need of a lung transplant. I know not every case is the same, and you should not take my experience as a model for what your niece is going through, but maybe an example that resection of a lung and/or lobe can benefit a patient greatly even if it is a tough recovery. Best of luck to you and yours.

 

[rotandroll]

I'm sorry I can't answer all of your questions. I am 24 years old, with CF. When I was 14 I had the left lower lobe of my lung removed for reasons similar to your niece's (the lobe was badly infected, not inflating correctly, full of gunk and reinfecting the rest of the healthy lung). The surgery was tough, it took more than eight hours due to complications, and the recovery was terrible-- but I made it through and I am still (hopefully) very far off from the need of a lung transplant. I know not every case is the same, and you should not take my experience as a model for what your niece is going through, but maybe an example that resection of a lung and/or lobe can benefit a patient greatly even if it is a tough recovery. Best of luck to you and yours.

 

[amyv]

Rotandroll....thank you so much for replying. I know every case is different but I am glad to hear you made it through this procedure 10 years ago!!

Maybe you can help me help my niece; we live about 5 hours away so visiting often is not an option. But what could I do to help her or the family at this point? (she has non-cf younger sister). Was there anything that you enjoyed or appreciated when you had to spend time at the hospital? I also have two young sons and need to explain to them why their cousin is sick; they are 5 and 3 so it's difficult to know just what to say to them at this point.


Thanks again for replying and keep those good lungs going!

Amy

 

[amyv]

Rotandroll....thank you so much for replying. I know every case is different but I am glad to hear you made it through this procedure 10 years ago!!

Maybe you can help me help my niece; we live about 5 hours away so visiting often is not an option. But what could I do to help her or the family at this point? (she has non-cf younger sister). Was there anything that you enjoyed or appreciated when you had to spend time at the hospital? I also have two young sons and need to explain to them why their cousin is sick; they are 5 and 3 so it's difficult to know just what to say to them at this point.


Thanks again for replying and keep those good lungs going!

Amy

 

[amyv]

Rotandroll....thank you so much for replying. I know every case is different but I am glad to hear you made it through this procedure 10 years ago!!

Maybe you can help me help my niece; we live about 5 hours away so visiting often is not an option. But what could I do to help her or the family at this point? (she has non-cf younger sister). Was there anything that you enjoyed or appreciated when you had to spend time at the hospital? I also have two young sons and need to explain to them why their cousin is sick; they are 5 and 3 so it's difficult to know just what to say to them at this point.


Thanks again for replying and keep those good lungs going!

Amy

 

[amyv]

Rotandroll....thank you so much for replying. I know every case is different but I am glad to hear you made it through this procedure 10 years ago!!

Maybe you can help me help my niece; we live about 5 hours away so visiting often is not an option. But what could I do to help her or the family at this point? (she has non-cf younger sister). Was there anything that you enjoyed or appreciated when you had to spend time at the hospital? I also have two young sons and need to explain to them why their cousin is sick; they are 5 and 3 so it's difficult to know just what to say to them at this point.


Thanks again for replying and keep those good lungs going!

Amy

 

[amyv]

Rotandroll....thank you so much for replying. I know every case is different but I am glad to hear you made it through this procedure 10 years ago!!

Maybe you can help me help my niece; we live about 5 hours away so visiting often is not an option. But what could I do to help her or the family at this point? (she has non-cf younger sister). Was there anything that you enjoyed or appreciated when you had to spend time at the hospital? I also have two young sons and need to explain to them why their cousin is sick; they are 5 and 3 so it's difficult to know just what to say to them at this point.


Thanks again for replying and keep those good lungs going!

Amy