New and bewildered

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[schmunks]

Hi Amy,

It is really interesting, the bit where it says that people with CF are like scientists reminded me of my brother, even though he did not know what the actual problem was he always knew what helped and what did'nt weather,temperature, food everything he did or did'nt do had an effect on how he would be each day.

As for the clapping neither he nor any of our family were informed that that is what needed to be done even though it now seems obvious that they should have told us about that because of the condition of his lungs. He used to break his ribs all the time from coughing because he had osteoporosis which then meant he could'nt cough properly to clear his chest.

The specialist that i see told me herself that she was one of the best in the country(England).

Sarah 32

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[Bumblebee]

hello

i'm so sorry for your loss and the circumstances leading to your diagnosis. I hope you're seeing a good doctor for your CF care and preferably going to a CF centre rather than just a CF clinic. (i'm from UK and believe me, there is a difference.) CF centres are dedicated centres to CF, more often or not they might have a dedicated ward. examples of this are: papworth (london), royal brompton (london), Heartlands (birmingham), wythenshawe (manchester) and Seacroft (leeds). Clinics are more likely to be a clinic for CF pateients but part of a general respiratory ward (the docs will have expertise in CF care and be specialist, but it's not all they're about). I'm at wythenshawe and it's fantastic, especially compared to smaller centres/clinics i have been at before. They all have vast experience and lots of patients. That said, a lot fo the smaller clinics are good as long as they don't pretend to know everything (same goes for big centres too!) If you think you may not be getting proper advice or care where you are - change clinics. If you want more info on clincs and centres in the UK go to the CFtrust notice boards. There are plenty people on them to advise you about the clinics they attend.

xxxx

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[spacemom]

Hello Sarah.
I'm very very sorry for your loss, and that you are confronted with CF yourself.
My son is 20, was diagnosed (not at 100% sure) 1 1/2 years ago. His only evident symptom is persistent cough.
Sarah, I'm from Portugal and I tell you, though this sometimes seems to be behind other countries in some areas (sad as I am to say this, I love my country), your brother's case would have ended in a lawsuit for medical negligence here.
Chin up and fight for your future. Maybe they find a cure soon... I have hopes. Good thoughts your way! <img src="i/expressions/face-icon-small-smile.gif" border="0">