Very concerned

[Cerulean]

I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

 

[Cerulean]

I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

 

[Cerulean]

I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

 

[Cerulean]

I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.

The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.

I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.

If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.

Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.

I feel like a pariah.

 

[Cerulean]

I had a clinic visit today and got some bad news. I have an FEV at approx 88% and feel relatively well concidering.
<br />
<br />The bad news. I've been tested positive for both MAC and Mycobacterium Absescus (sp?). Dr. said that the treatment for this is VERY long and involving. I got the impression that there are major side effects. So he is not treating the MAC. What concerns me is that not treating a bug will lead to irreparable lung damage, and I am not happy with this since I am fairly healthy. He also said that CFers with Myco do not qualify for lung transplants. That concerns me VERY much, as, if that is the case, I wont have a back up plan if things get nasty.
<br />
<br />I'm not one to cry, but I have to tell you, I just faced my mortality today. I've read something about this CF patient was declining in lung function at a rate of -2% FEV1/yr and that horribly depresses me since, from what I have read, you can't get rid of the bacterium in totality, not to mention that the two can be antibiotic resistant.
<br />
<br />If anyone has this bacterium, could you let me know what you are experiencing, and if I am blowing this all out of proportion. To add icing on top of the cake is, I've stayed out of hospitals almost all my life. I've I had two hospital stays in the past 2 years. I've read that Myco Absescus is transmitted in hospital via contaminated equipment. As you may understand, this makes me very cross as my infection may be the result of negligence.
<br />
<br />Now that I have this I can't participate in many studys and I have to wear a mask to appointments from now on.
<br />
<br />I feel like a pariah.

 

[JazzysMom]

We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

 

[JazzysMom]

We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

 

[JazzysMom]

We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

 

[JazzysMom]

We have a few patients that culture the same. Hopefully they will respond soon!

Sorry to hear it all slamming you!

 

[JazzysMom]

We have a few patients that culture the same. Hopefully they will respond soon!
<br />
<br />Sorry to hear it all slamming you!

 

[saveferris2009]

wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

 

[saveferris2009]

wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

 

[saveferris2009]

wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

 

[saveferris2009]

wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.

99% of all CFer's would KILL for lung function like that.

[edited because i made an incorrect statement here]

I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

 

[saveferris2009]

wow 88% FEV1 at age 42? Most CFer's don't even live to 40, let alone with lung function like that.
<br />
<br />99% of all CFer's would KILL for lung function like that.
<br />
<br />[edited because i made an incorrect statement here]
<br />
<br />I'm sorry to hear about the new bacteria. But you've truly lead a life thus far that 99% of CFer's can only dream of....

 

[hmw]

Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

 

[hmw]

Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

 

[hmw]

Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

 

[hmw]

Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...

Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.

 

[hmw]

Amy, to be fair, she stated she has been to the hospital twice in the last two years, not her whole life. It's a blessing to live a healthy life, and something to be grateful for indeed- but it is a blow to be given bad news however it comes and one has a right to feel shocked and the ensuing emotions that go with it, at the potential loss of that good health. Your post pretty much minimized any need for support or compassion Cerulean may have been feeling...
<br />
<br />Cerulean, I hope you are able to connect with the others here who have the same issues you do and you're able to have your concerns better addressed as far as the impact these bugs may have on your health.