New and bewildered

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

schmunks · Jun 25, 2007

Hi all,
My name is Sarah aged 32 and i live in England. I will start at the beginning to make things easier. My Brother Steven passed away 12th December 06 aged 41 <img src="i/expressions/brokenheart.gif" border="0">, He was very poorly for 3 years, he was first diagnosed with asthma when he was 18, i was diagnosed with asthma when i was 17. He had various sinus problems on and off but nothing major.
He started to become poorly about 3 1/2 years ago and had staph and pseudo eventually 2 different strains of pseudo. We asked the hospital that was caring for him if he would be able to be considered for a lung transplant as he was unable to walk very far and it was passed off as a ridiculous idea, we were constantly asking what the cause of his problem was and we were told he had bronchiectesis. He was taken into intensive care in nov 06 was diagnosed with CF four weeks later, 1 day before he died.
I was then told to have tests and i also have CF with genes r117h & df508. <img src="i/expressions/face-icon-small-shocked.gif" border="0">

I had bronchal pnuemonia twice as a baby and have had a few sinus infections, The team at the hospital i attend are very helpful and tell me that what i saw happen to my brother won't happen to me. How can they be so sure?
I am a bit all over the place in my head at the moment because i don't know how to take it all in, and accept that after what happened to my brother.

Do you think that it is acceptable for a hospital and doctor to not to diagnose his illness until it was too late?

I am also having fertility problems that have'nt been answered?

<img src="i/expressions/face-icon-small-sad.gif" border="0">

Any input would be incredibly helpful

Thanks

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

JazzysMom · Jun 25, 2007

To be dx too late is a shame. It isnt unheard of to be dx later on, but for it to get to the point of the day before his death is scary. I am sure it happens often. We have members who have fought long/hard to get a dx from a doctor. Yet we have other members who have very pro active doctors who with had CFers with hardly any symptoms get tested. It is a very wide spectrum when it comes to the doctors.

When they say that what happened to your bro wont happen to you.....are they referring to the next day you will die? That is probably true. BUT CF is progressive and we all are likely to die younger then someone without CF. I would not concentrate on that. I would focus on the fact that you found out earlier then your brother and can work on maintaining your health.

It sounds like you have been through a lot and I am sure your mind is all over the place. Please know that this is a great place to start with gathering your thoughts.

It also isnt uncommon for CF woman & men to have fertility difficulties. Again like so many things with CF it varies tremendously from person to person.

chrissyd · Jun 25, 2007