34 newly diagnosed

[donnamariefroncillo]

I am 43 and just diagnosed in May. I have also been very athletic and exercize has always been a part of my life. This has been a nightmare for me with all the treatments. Now I am out of work on disability. It is so hard but I am doing what a good patient should do. Your story sounds similiar to mine. I have d508f and 2789. My sister is a carrier. My brothers do not want to be tested yet. Thanks for sharing your story. Hope to hear from you soon.

 

[donnamariefroncillo]

I am 43 and just diagnosed in May. I have also been very athletic and exercize has always been a part of my life. This has been a nightmare for me with all the treatments. Now I am out of work on disability. It is so hard but I am doing what a good patient should do. Your story sounds similiar to mine. I have d508f and 2789. My sister is a carrier. My brothers do not want to be tested yet. Thanks for sharing your story. Hope to hear from you soon.

 

[donnamariefroncillo]

I am 43 and just diagnosed in May. I have also been very athletic and exercize has always been a part of my life. This has been a nightmare for me with all the treatments. Now I am out of work on disability. It is so hard but I am doing what a good patient should do. Your story sounds similiar to mine. I have d508f and 2789. My sister is a carrier. My brothers do not want to be tested yet. Thanks for sharing your story. Hope to hear from you soon.

 

[donnamariefroncillo]

I am 43 and just diagnosed in May. I have also been very athletic and exercize has always been a part of my life. This has been a nightmare for me with all the treatments. Now I am out of work on disability. It is so hard but I am doing what a good patient should do. Your story sounds similiar to mine. I have d508f and 2789. My sister is a carrier. My brothers do not want to be tested yet. Thanks for sharing your story. Hope to hear from you soon.

 

[donnamariefroncillo]

I am 43 and just diagnosed in May. I have also been very athletic and exercize has always been a part of my life. This has been a nightmare for me with all the treatments. Now I am out of work on disability. It is so hard but I am doing what a good patient should do. Your story sounds similiar to mine. I have d508f and 2789. My sister is a carrier. My brothers do not want to be tested yet. Thanks for sharing your story. Hope to hear from you soon.

 

[tarahurlburt]

Thanks for the replies... I am hanging in there. I am sick and have been diagnosed with drug resistant enterobacter aerogenes bacteria in my lungs. They put me on xopenex and alvesco aveloxx in addition to my 10 other meds. I haven't been running for the last few weeks because I had sinus surger ---Staph infection from that one... but it seems like things are turning around. My PFT's were down 25% and today up 3% from last week!!

 

[tarahurlburt]

Thanks for the replies... I am hanging in there. I am sick and have been diagnosed with drug resistant enterobacter aerogenes bacteria in my lungs. They put me on xopenex and alvesco aveloxx in addition to my 10 other meds. I haven't been running for the last few weeks because I had sinus surger ---Staph infection from that one... but it seems like things are turning around. My PFT's were down 25% and today up 3% from last week!!

 

[tarahurlburt]

Thanks for the replies... I am hanging in there. I am sick and have been diagnosed with drug resistant enterobacter aerogenes bacteria in my lungs. They put me on xopenex and alvesco aveloxx in addition to my 10 other meds. I haven't been running for the last few weeks because I had sinus surger ---Staph infection from that one... but it seems like things are turning around. My PFT's were down 25% and today up 3% from last week!!

 

[tarahurlburt]

Thanks for the replies... I am hanging in there. I am sick and have been diagnosed with drug resistant enterobacter aerogenes bacteria in my lungs. They put me on xopenex and alvesco aveloxx in addition to my 10 other meds. I haven't been running for the last few weeks because I had sinus surger ---Staph infection from that one... but it seems like things are turning around. My PFT's were down 25% and today up 3% from last week!!

 

[tarahurlburt]

Thanks for the replies... I am hanging in there. I am sick and have been diagnosed with drug resistant enterobacter aerogenes bacteria in my lungs. They put me on xopenex and alvesco aveloxx in addition to my 10 other meds. I haven't been running for the last few weeks because I had sinus surger ---Staph infection from that one... but it seems like things are turning around. My PFT's were down 25% and today up 3% from last week!!

 

[JustDucky]

I am sorry you have been sick, so many CF'ers get sick this time of the year and it just sucks. I hope your functions recover, it sounds like they are on the right track. I hope the antibiotics work too, it is very frustrating dealing with resistant bugs. Hang in there and hugs,
Jenn

 

[JustDucky]

I am sorry you have been sick, so many CF'ers get sick this time of the year and it just sucks. I hope your functions recover, it sounds like they are on the right track. I hope the antibiotics work too, it is very frustrating dealing with resistant bugs. Hang in there and hugs,
Jenn

 

[JustDucky]

I am sorry you have been sick, so many CF'ers get sick this time of the year and it just sucks. I hope your functions recover, it sounds like they are on the right track. I hope the antibiotics work too, it is very frustrating dealing with resistant bugs. Hang in there and hugs,
Jenn

 

[JustDucky]

I am sorry you have been sick, so many CF'ers get sick this time of the year and it just sucks. I hope your functions recover, it sounds like they are on the right track. I hope the antibiotics work too, it is very frustrating dealing with resistant bugs. Hang in there and hugs,
Jenn

 

[JustDucky]

I am sorry you have been sick, so many CF'ers get sick this time of the year and it just sucks. I hope your functions recover, it sounds like they are on the right track. I hope the antibiotics work too, it is very frustrating dealing with resistant bugs. Hang in there and hugs,
<br />Jenn

 

[tarahurlburt]

Thanks Jenn.

I am okay. It's just hard when you are able to run a 1/2 marathon and then the next week you are huffing walking up the stairs. They are going to try an anti-biotic that is not a quinolone and see if that kills the bug. If not we'll do at home anti-biotics IV.
I am very fortunate and have a great life... that is what i need to keep my eye on.

Thanks again
Tara

 

[tarahurlburt]

Thanks Jenn.

I am okay. It's just hard when you are able to run a 1/2 marathon and then the next week you are huffing walking up the stairs. They are going to try an anti-biotic that is not a quinolone and see if that kills the bug. If not we'll do at home anti-biotics IV.
I am very fortunate and have a great life... that is what i need to keep my eye on.

Thanks again
Tara

 

[tarahurlburt]

Thanks Jenn.

I am okay. It's just hard when you are able to run a 1/2 marathon and then the next week you are huffing walking up the stairs. They are going to try an anti-biotic that is not a quinolone and see if that kills the bug. If not we'll do at home anti-biotics IV.
I am very fortunate and have a great life... that is what i need to keep my eye on.

Thanks again
Tara

 

[tarahurlburt]

Thanks Jenn.

I am okay. It's just hard when you are able to run a 1/2 marathon and then the next week you are huffing walking up the stairs. They are going to try an anti-biotic that is not a quinolone and see if that kills the bug. If not we'll do at home anti-biotics IV.
I am very fortunate and have a great life... that is what i need to keep my eye on.

Thanks again
Tara

 

[tarahurlburt]

Thanks Jenn.
<br />
<br />I am okay. It's just hard when you are able to run a 1/2 marathon and then the next week you are huffing walking up the stairs. They are going to try an anti-biotic that is not a quinolone and see if that kills the bug. If not we'll do at home anti-biotics IV.
<br />I am very fortunate and have a great life... that is what i need to keep my eye on.
<br />
<br />Thanks again
<br />Tara