Stopping Treatment.

[NYCLawGirl]

Wow. Okay, so without knowing your lung function or your personal health status (other than your allusion to PFTs being low as of late and having CFRD), I don't think any of us can tell you what to "expect" from stopping treatment. Depending on what your health routine is now, and what stage your CF is in (e.g. moderate, severe, end stage, etc), stopping your treatment will have very different results. I can say, however, that if you're truly serious about wanting to stop treatment you should take Mel's advice and have a very frank discussion with your doctors and caretakers about what is and what is not acceptable. You should also probably expect them to fight your decision. And, like everyone else, I would urge you to seek some counseling and guidance before you make any decisions that will be hard to reverse. Depression is a very scary thing, but sometimes in overcoming that you can also find the strength to give fighting CF another try. And either way, I hope you find peace and comfort in whatever you decide.

Just remember that you're not alone in finding this disease and its progression frustrating and scary...

 

[NYCLawGirl]

Wow. Okay, so without knowing your lung function or your personal health status (other than your allusion to PFTs being low as of late and having CFRD), I don't think any of us can tell you what to "expect" from stopping treatment. Depending on what your health routine is now, and what stage your CF is in (e.g. moderate, severe, end stage, etc), stopping your treatment will have very different results. I can say, however, that if you're truly serious about wanting to stop treatment you should take Mel's advice and have a very frank discussion with your doctors and caretakers about what is and what is not acceptable. You should also probably expect them to fight your decision. And, like everyone else, I would urge you to seek some counseling and guidance before you make any decisions that will be hard to reverse. Depression is a very scary thing, but sometimes in overcoming that you can also find the strength to give fighting CF another try. And either way, I hope you find peace and comfort in whatever you decide.

Just remember that you're not alone in finding this disease and its progression frustrating and scary...

 

[NYCLawGirl]

Wow. Okay, so without knowing your lung function or your personal health status (other than your allusion to PFTs being low as of late and having CFRD), I don't think any of us can tell you what to "expect" from stopping treatment. Depending on what your health routine is now, and what stage your CF is in (e.g. moderate, severe, end stage, etc), stopping your treatment will have very different results. I can say, however, that if you're truly serious about wanting to stop treatment you should take Mel's advice and have a very frank discussion with your doctors and caretakers about what is and what is not acceptable. You should also probably expect them to fight your decision. And, like everyone else, I would urge you to seek some counseling and guidance before you make any decisions that will be hard to reverse. Depression is a very scary thing, but sometimes in overcoming that you can also find the strength to give fighting CF another try. And either way, I hope you find peace and comfort in whatever you decide.

Just remember that you're not alone in finding this disease and its progression frustrating and scary...

 

[NYCLawGirl]

Wow. Okay, so without knowing your lung function or your personal health status (other than your allusion to PFTs being low as of late and having CFRD), I don't think any of us can tell you what to "expect" from stopping treatment. Depending on what your health routine is now, and what stage your CF is in (e.g. moderate, severe, end stage, etc), stopping your treatment will have very different results. I can say, however, that if you're truly serious about wanting to stop treatment you should take Mel's advice and have a very frank discussion with your doctors and caretakers about what is and what is not acceptable. You should also probably expect them to fight your decision. And, like everyone else, I would urge you to seek some counseling and guidance before you make any decisions that will be hard to reverse. Depression is a very scary thing, but sometimes in overcoming that you can also find the strength to give fighting CF another try. And either way, I hope you find peace and comfort in whatever you decide.

Just remember that you're not alone in finding this disease and its progression frustrating and scary...

 

[NYCLawGirl]

Wow. Okay, so without knowing your lung function or your personal health status (other than your allusion to PFTs being low as of late and having CFRD), I don't think any of us can tell you what to "expect" from stopping treatment. Depending on what your health routine is now, and what stage your CF is in (e.g. moderate, severe, end stage, etc), stopping your treatment will have very different results. I can say, however, that if you're truly serious about wanting to stop treatment you should take Mel's advice and have a very frank discussion with your doctors and caretakers about what is and what is not acceptable. You should also probably expect them to fight your decision. And, like everyone else, I would urge you to seek some counseling and guidance before you make any decisions that will be hard to reverse. Depression is a very scary thing, but sometimes in overcoming that you can also find the strength to give fighting CF another try. And either way, I hope you find peace and comfort in whatever you decide.
<br />
<br />Just remember that you're not alone in finding this disease and its progression frustrating and scary...

 

[JustDucky]

I agree with Mel and Marjolein as far as end stage CF and misinformation. Please talk about all of your concerns with your doctors so that they can provide you with the most accurate information and options that may be appropriate for you.

It is important that you make your wishes known (DNR, advance directives and such) and on paper as well as discussed with your family and doctors. I don't know what your situation is as far as your lung function, whether you are continuously on IV's and sick, depressed, etc.

If you are doing very poorly with death expected fairly soon and wish for treatment to end, that is ultimately up to you and after much soul searching I presume... At this stage,doctors might offer hospice services (emphasis is on comfort care, such as alleviating breathlessness and any pain)..but they don't do this unless death is expected relatively soon (within 6 months or so) from what I understand but I could be mistaken. The only experience that I have with palliative care is purely as a professional (I was a nurse on oncology at one time).

I also pray that you find peace with your decision, whatever it may be. Just don't make it too hastily and without weighing all of your options. Hugs, Jenn

 

[JustDucky]

I agree with Mel and Marjolein as far as end stage CF and misinformation. Please talk about all of your concerns with your doctors so that they can provide you with the most accurate information and options that may be appropriate for you.

It is important that you make your wishes known (DNR, advance directives and such) and on paper as well as discussed with your family and doctors. I don't know what your situation is as far as your lung function, whether you are continuously on IV's and sick, depressed, etc.

If you are doing very poorly with death expected fairly soon and wish for treatment to end, that is ultimately up to you and after much soul searching I presume... At this stage,doctors might offer hospice services (emphasis is on comfort care, such as alleviating breathlessness and any pain)..but they don't do this unless death is expected relatively soon (within 6 months or so) from what I understand but I could be mistaken. The only experience that I have with palliative care is purely as a professional (I was a nurse on oncology at one time).

I also pray that you find peace with your decision, whatever it may be. Just don't make it too hastily and without weighing all of your options. Hugs, Jenn

 

[JustDucky]

I agree with Mel and Marjolein as far as end stage CF and misinformation. Please talk about all of your concerns with your doctors so that they can provide you with the most accurate information and options that may be appropriate for you.

It is important that you make your wishes known (DNR, advance directives and such) and on paper as well as discussed with your family and doctors. I don't know what your situation is as far as your lung function, whether you are continuously on IV's and sick, depressed, etc.

If you are doing very poorly with death expected fairly soon and wish for treatment to end, that is ultimately up to you and after much soul searching I presume... At this stage,doctors might offer hospice services (emphasis is on comfort care, such as alleviating breathlessness and any pain)..but they don't do this unless death is expected relatively soon (within 6 months or so) from what I understand but I could be mistaken. The only experience that I have with palliative care is purely as a professional (I was a nurse on oncology at one time).

I also pray that you find peace with your decision, whatever it may be. Just don't make it too hastily and without weighing all of your options. Hugs, Jenn

 

[JustDucky]

I agree with Mel and Marjolein as far as end stage CF and misinformation. Please talk about all of your concerns with your doctors so that they can provide you with the most accurate information and options that may be appropriate for you.

It is important that you make your wishes known (DNR, advance directives and such) and on paper as well as discussed with your family and doctors. I don't know what your situation is as far as your lung function, whether you are continuously on IV's and sick, depressed, etc.

If you are doing very poorly with death expected fairly soon and wish for treatment to end, that is ultimately up to you and after much soul searching I presume... At this stage,doctors might offer hospice services (emphasis is on comfort care, such as alleviating breathlessness and any pain)..but they don't do this unless death is expected relatively soon (within 6 months or so) from what I understand but I could be mistaken. The only experience that I have with palliative care is purely as a professional (I was a nurse on oncology at one time).

I also pray that you find peace with your decision, whatever it may be. Just don't make it too hastily and without weighing all of your options. Hugs, Jenn

 

[JustDucky]

I agree with Mel and Marjolein as far as end stage CF and misinformation. Please talk about all of your concerns with your doctors so that they can provide you with the most accurate information and options that may be appropriate for you.
<br />
<br />It is important that you make your wishes known (DNR, advance directives and such) and on paper as well as discussed with your family and doctors. I don't know what your situation is as far as your lung function, whether you are continuously on IV's and sick, depressed, etc.
<br />
<br />If you are doing very poorly with death expected fairly soon and wish for treatment to end, that is ultimately up to you and after much soul searching I presume... At this stage,doctors might offer hospice services (emphasis is on comfort care, such as alleviating breathlessness and any pain)..but they don't do this unless death is expected relatively soon (within 6 months or so) from what I understand but I could be mistaken. The only experience that I have with palliative care is purely as a professional (I was a nurse on oncology at one time).
<br />
<br />I also pray that you find peace with your decision, whatever it may be. Just don't make it too hastily and without weighing all of your options. Hugs, Jenn
<br />
<br />

 

[Giggles]

I do feel your decision is yours but I do hope you can find some light and know you are worth fighting the good fight. Do not give up! Why? Keep pushing on and with all the new meds out there having CF now is so much better than many moons ago. You can do it. I would talk with a social worker at your CF clinic. It is so normal to feel down and want to give up but please don't. GOD has a reason for everything and just do the best you can and see all the wonderful things life has in stored for you. You can do it! Don't give in, the alternative is not worth it!

Jennifer 36 years old with CF and CFRD

 

[Giggles]

I do feel your decision is yours but I do hope you can find some light and know you are worth fighting the good fight. Do not give up! Why? Keep pushing on and with all the new meds out there having CF now is so much better than many moons ago. You can do it. I would talk with a social worker at your CF clinic. It is so normal to feel down and want to give up but please don't. GOD has a reason for everything and just do the best you can and see all the wonderful things life has in stored for you. You can do it! Don't give in, the alternative is not worth it!

Jennifer 36 years old with CF and CFRD

 

[Giggles]

I do feel your decision is yours but I do hope you can find some light and know you are worth fighting the good fight. Do not give up! Why? Keep pushing on and with all the new meds out there having CF now is so much better than many moons ago. You can do it. I would talk with a social worker at your CF clinic. It is so normal to feel down and want to give up but please don't. GOD has a reason for everything and just do the best you can and see all the wonderful things life has in stored for you. You can do it! Don't give in, the alternative is not worth it!

Jennifer 36 years old with CF and CFRD

 

[Giggles]

I do feel your decision is yours but I do hope you can find some light and know you are worth fighting the good fight. Do not give up! Why? Keep pushing on and with all the new meds out there having CF now is so much better than many moons ago. You can do it. I would talk with a social worker at your CF clinic. It is so normal to feel down and want to give up but please don't. GOD has a reason for everything and just do the best you can and see all the wonderful things life has in stored for you. You can do it! Don't give in, the alternative is not worth it!

Jennifer 36 years old with CF and CFRD

 

[Giggles]

I do feel your decision is yours but I do hope you can find some light and know you are worth fighting the good fight. Do not give up! Why? Keep pushing on and with all the new meds out there having CF now is so much better than many moons ago. You can do it. I would talk with a social worker at your CF clinic. It is so normal to feel down and want to give up but please don't. GOD has a reason for everything and just do the best you can and see all the wonderful things life has in stored for you. You can do it! Don't give in, the alternative is not worth it!
<br />
<br />Jennifer 36 years old with CF and CFRD

 

[snowcone200]

Yes I do suffer from depression. And honestly I just want it to all stop. It's very hard to stay healthy and its pointless well at least to me at this point. If you saw a picture of me now you would never guessed I was sick at all. But deep down I know and I am just worn out from it all, I don't wanna prolong life anymore if I find it unbearable and uncomfortable every single day. The Depression doesn't make it any easier, I am just tired already. really I just want out now I can't take this burden now more. I know most you know how hard it is to stay healthy, and I know you fight it everyday. But I can't do it anymore really, I am tired of my lungs and body being clogged with mucus. I am surprised I still can breath with all this mucus. I am tired of the horrible smells from the bacteria from lung infections. I just want to rest now, its been a long 19 years and I just want it to be over with.

 

[snowcone200]

Yes I do suffer from depression. And honestly I just want it to all stop. It's very hard to stay healthy and its pointless well at least to me at this point. If you saw a picture of me now you would never guessed I was sick at all. But deep down I know and I am just worn out from it all, I don't wanna prolong life anymore if I find it unbearable and uncomfortable every single day. The Depression doesn't make it any easier, I am just tired already. really I just want out now I can't take this burden now more. I know most you know how hard it is to stay healthy, and I know you fight it everyday. But I can't do it anymore really, I am tired of my lungs and body being clogged with mucus. I am surprised I still can breath with all this mucus. I am tired of the horrible smells from the bacteria from lung infections. I just want to rest now, its been a long 19 years and I just want it to be over with.

 

[snowcone200]

Yes I do suffer from depression. And honestly I just want it to all stop. It's very hard to stay healthy and its pointless well at least to me at this point. If you saw a picture of me now you would never guessed I was sick at all. But deep down I know and I am just worn out from it all, I don't wanna prolong life anymore if I find it unbearable and uncomfortable every single day. The Depression doesn't make it any easier, I am just tired already. really I just want out now I can't take this burden now more. I know most you know how hard it is to stay healthy, and I know you fight it everyday. But I can't do it anymore really, I am tired of my lungs and body being clogged with mucus. I am surprised I still can breath with all this mucus. I am tired of the horrible smells from the bacteria from lung infections. I just want to rest now, its been a long 19 years and I just want it to be over with.

 

[snowcone200]

Yes I do suffer from depression. And honestly I just want it to all stop. It's very hard to stay healthy and its pointless well at least to me at this point. If you saw a picture of me now you would never guessed I was sick at all. But deep down I know and I am just worn out from it all, I don't wanna prolong life anymore if I find it unbearable and uncomfortable every single day. The Depression doesn't make it any easier, I am just tired already. really I just want out now I can't take this burden now more. I know most you know how hard it is to stay healthy, and I know you fight it everyday. But I can't do it anymore really, I am tired of my lungs and body being clogged with mucus. I am surprised I still can breath with all this mucus. I am tired of the horrible smells from the bacteria from lung infections. I just want to rest now, its been a long 19 years and I just want it to be over with.

 

[snowcone200]

Yes I do suffer from depression. And honestly I just want it to all stop. It's very hard to stay healthy and its pointless well at least to me at this point. If you saw a picture of me now you would never guessed I was sick at all. But deep down I know and I am just worn out from it all, I don't wanna prolong life anymore if I find it unbearable and uncomfortable every single day. The Depression doesn't make it any easier, I am just tired already. really I just want out now I can't take this burden now more. I know most you know how hard it is to stay healthy, and I know you fight it everyday. But I can't do it anymore really, I am tired of my lungs and body being clogged with mucus. I am surprised I still can breath with all this mucus. I am tired of the horrible smells from the bacteria from lung infections. I just want to rest now, its been a long 19 years and I just want it to be over with.