What to do after a bad dr's apptmnt?

[mah]

Hey, everyone. I've been on antbx for the past month, one lung's gotten better, the other worse. I've gone to the ER twice in the past month. I had an apptmnt w/ head of adult cf clinic. I am 30 & on hi-flow 02. Usually the apptmnt goes something like this "Well, let's try...[fill in the blank w/ antbx]" but this time my doctor's demeanor was a bit different. He seemed genuinely concerned and it scared me. I am allergic to alot of antbx and resistant to almost as many. I know this dr. is one of the best, which is why when he is concerned, I am concerned. The situation has the feel of "We are limited in our options..." and this was said a few apptmnts ago. I just don't know how to get rid of these feelings that things are not going well. I know they're not. I've been worked up for a transplant and there's a slew of reasons why that's just not an option for me. How do you get rid of these feelings of knowing the situation is grim?

Just wondering what works for patients who have & are going through this,
Me

 

[mah]

Hey, everyone. I've been on antbx for the past month, one lung's gotten better, the other worse. I've gone to the ER twice in the past month. I had an apptmnt w/ head of adult cf clinic. I am 30 & on hi-flow 02. Usually the apptmnt goes something like this "Well, let's try...[fill in the blank w/ antbx]" but this time my doctor's demeanor was a bit different. He seemed genuinely concerned and it scared me. I am allergic to alot of antbx and resistant to almost as many. I know this dr. is one of the best, which is why when he is concerned, I am concerned. The situation has the feel of "We are limited in our options..." and this was said a few apptmnts ago. I just don't know how to get rid of these feelings that things are not going well. I know they're not. I've been worked up for a transplant and there's a slew of reasons why that's just not an option for me. How do you get rid of these feelings of knowing the situation is grim?

Just wondering what works for patients who have & are going through this,
Me

 

[mah]

Hey, everyone. I've been on antbx for the past month, one lung's gotten better, the other worse. I've gone to the ER twice in the past month. I had an apptmnt w/ head of adult cf clinic. I am 30 & on hi-flow 02. Usually the apptmnt goes something like this "Well, let's try...[fill in the blank w/ antbx]" but this time my doctor's demeanor was a bit different. He seemed genuinely concerned and it scared me. I am allergic to alot of antbx and resistant to almost as many. I know this dr. is one of the best, which is why when he is concerned, I am concerned. The situation has the feel of "We are limited in our options..." and this was said a few apptmnts ago. I just don't know how to get rid of these feelings that things are not going well. I know they're not. I've been worked up for a transplant and there's a slew of reasons why that's just not an option for me. How do you get rid of these feelings of knowing the situation is grim?
<br />
<br />Just wondering what works for patients who have & are going through this,
<br />Me

 

[Katherine]

MY husband had a little scare a few years ago the what he did was to work as hard as he could to clear his lungs. He put his pep mask on his altrsonic nebuliser and it works a treat. keep going with treatment and prove your doctor wrong. It's worth it to give anything a go.

 

[Katherine]

MY husband had a little scare a few years ago the what he did was to work as hard as he could to clear his lungs. He put his pep mask on his altrsonic nebuliser and it works a treat. keep going with treatment and prove your doctor wrong. It's worth it to give anything a go.

 

[Katherine]

MY husband had a little scare a few years ago the what he did was to work as hard as he could to clear his lungs. He put his pep mask on his altrsonic nebuliser and it works a treat. keep going with treatment and prove your doctor wrong. It's worth it to give anything a go.

 

[MiddleAgedLady]

Katherine's right! THis disease is so unpredictable, you really can never afford to slack off. I tell myself there's always another therapy or drug coming,like Cayston, which I consider a Wonder Drug. Hang in there.

 

[MiddleAgedLady]

Katherine's right! THis disease is so unpredictable, you really can never afford to slack off. I tell myself there's always another therapy or drug coming,like Cayston, which I consider a Wonder Drug. Hang in there.

 

[MiddleAgedLady]

Katherine's right! THis disease is so unpredictable, you really can never afford to slack off. I tell myself there's always another therapy or drug coming,like Cayston, which I consider a Wonder Drug. Hang in there.

 

[Hardak]

Hang in there, keep at the daily maintenance. As far as the emotional fall out of things looking grim..

My last visit I curled up into a ball for two weeks, talked to as many of my close friends/family as I thought was appropriate, and took a good long hard look at what I wanted out of life for the next year or two, along with looking at any regrets I might have. I know it sounds rather grim on the last subject here, but I also wrote a will and made my wishes known as to what would be fitting to do with the remains.

Keith

 

[Hardak]

Hang in there, keep at the daily maintenance. As far as the emotional fall out of things looking grim..

My last visit I curled up into a ball for two weeks, talked to as many of my close friends/family as I thought was appropriate, and took a good long hard look at what I wanted out of life for the next year or two, along with looking at any regrets I might have. I know it sounds rather grim on the last subject here, but I also wrote a will and made my wishes known as to what would be fitting to do with the remains.

Keith

 

[Hardak]

Hang in there, keep at the daily maintenance. As far as the emotional fall out of things looking grim..
<br />
<br />My last visit I curled up into a ball for two weeks, talked to as many of my close friends/family as I thought was appropriate, and took a good long hard look at what I wanted out of life for the next year or two, along with looking at any regrets I might have. I know it sounds rather grim on the last subject here, but I also wrote a will and made my wishes known as to what would be fitting to do with the remains.
<br />
<br />Keith