Very concerned

[Aspiemom]

I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

 

[Aspiemom]

I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

 

[Aspiemom]

I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

 

[Aspiemom]

I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.

I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

 

[Aspiemom]

I'm very sorry to hear this. I would be alarmed, also. I hope you are able to connect with others here who have gone through the same thing.
<br />
<br />I'm older than you and enjoyed a good length of time before my dx (age 43) where I wasn't "encumbered" and wasn't in the hospital. The last few years have been very depressing as I see everyting "hit the wall". I know how hard it is to go from the one end of the spectrum to the loss of it. You go through grieving. (And that you most likely contracted it while IN the hospital makes it more maddening!)

 

[Melissa75]

I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

 

[Melissa75]

I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

 

[Melissa75]

I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

 

[Melissa75]

I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.

Also, Univ. Texas at Tyler and NIH.

There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

 

[Melissa75]

I think BelEache has MAC and is/was at National Jewish in Denver. That is considered one of the best treatment places for NTMs.
<br />
<br />Also, Univ. Texas at Tyler and NIH.
<br />
<br />There is a woman on the bronchiectasis r us forum who has m.abcessus and MAC. I can find out what treatment she has been getting, though I know w/cf, it may be different.

 

[sweetpea21]

Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

 

[sweetpea21]

Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

 

[sweetpea21]

Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

 

[sweetpea21]

Cerulean,

I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.

I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.

Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.

I really hope you are able to get things figured out. Feel free to PM me about it.

Good luck!

 

[sweetpea21]

Cerulean,
<br />
<br />I am so sorry to hear this. I was diagnosed with Myco Abscessus a few years ago so I know how overwhelmed you are feeling. My FEV1 of 74% continued to drop in spite of several hospitalizations for pseudomonas treatment. However, since the diagnosis of the myco and having treated it my FEV1 has remained stable at 48%.
<br />
<br />I saw a specialist in treating mycobacteria and the treatment for me was 6 months of IV antibiotics. It has been 2 years since then and my cultures have remained negative.
<br />
<br />Nontuberculosis mycobacteria is believed to not be spread by person to person contact. It is commonly found in many water sources so there is no definate way to know how you got it.
<br />
<br />I really hope you are able to get things figured out. Feel free to PM me about it.
<br />
<br />Good luck!

 

[krisgabes]

Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

 

[krisgabes]

Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

 

[krisgabes]

Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

 

[krisgabes]

Cerulean-

I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.

I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.

I hope things work out for you and I hope you are able to work through this.

 

[krisgabes]

Cerulean-
<br />
<br />I am so sorry to hear that you have been delivered this awful news. I don't blame you for being upset, when you have had such good lung function for most of your life and then it begins to decline it is a very scary experience.
<br />
<br />I have been in the same boat as you as far as lung function goes. I've always had a great FEV level but over the past three years I have gotten more lung infections than I ever have in my life. I also have had to face the fact that oral antibiotics are a thing of the past for me and IV is my future.
<br />
<br />I hope things work out for you and I hope you are able to work through this.