bad Dr. Visit

[mike0122]

I've had a crappy day at the doc today. Lately I've been feeling kind of blah. I've felt tight and coughing more.

I went on home IV a few weeks ago. I feel better but my PFT is 50% rather then the normal. The doc has decided this is my new baseline after several similar tests. On top of this, I have a pseudomonis (sp??) that is resistant to pretty much everything so he has said at this point, single drugs and culture sensitivities will not be considered anymore.

He also told me that at 30%, is when lung transplants are typically looked at. However, since I've had liver issues due to the CF, most transplant hospitals won't touch me. My liver studies has been close to normal since I was 20 and have not changed. I feel life I'm just waiting to die now and feel lost.

Needless to say, I feel like I need to start planning my death. There is no positive way to look at this or at least this is how I feel. My wife is upset and I'm upset. I just am in a state of shock right now and I guess I needed to get it out of my system.

Mike

 

[mike0122]

I've had a crappy day at the doc today. Lately I've been feeling kind of blah. I've felt tight and coughing more.

I went on home IV a few weeks ago. I feel better but my PFT is 50% rather then the normal. The doc has decided this is my new baseline after several similar tests. On top of this, I have a pseudomonis (sp??) that is resistant to pretty much everything so he has said at this point, single drugs and culture sensitivities will not be considered anymore.

He also told me that at 30%, is when lung transplants are typically looked at. However, since I've had liver issues due to the CF, most transplant hospitals won't touch me. My liver studies has been close to normal since I was 20 and have not changed. I feel life I'm just waiting to die now and feel lost.

Needless to say, I feel like I need to start planning my death. There is no positive way to look at this or at least this is how I feel. My wife is upset and I'm upset. I just am in a state of shock right now and I guess I needed to get it out of my system.

Mike

 

[mike0122]

I've had a crappy day at the doc today. Lately I've been feeling kind of blah. I've felt tight and coughing more.
<br />
<br />I went on home IV a few weeks ago. I feel better but my PFT is 50% rather then the normal. The doc has decided this is my new baseline after several similar tests. On top of this, I have a pseudomonis (sp??) that is resistant to pretty much everything so he has said at this point, single drugs and culture sensitivities will not be considered anymore.
<br />
<br />He also told me that at 30%, is when lung transplants are typically looked at. However, since I've had liver issues due to the CF, most transplant hospitals won't touch me. My liver studies has been close to normal since I was 20 and have not changed. I feel life I'm just waiting to die now and feel lost.
<br />
<br />Needless to say, I feel like I need to start planning my death. There is no positive way to look at this or at least this is how I feel. My wife is upset and I'm upset. I just am in a state of shock right now and I guess I needed to get it out of my system.
<br />
<br />Mike

 

[MeggieLow]

Man that is a bad doctor visit. Maybe you two should get away for a little even if its just to a local bed and breakfast and take a break from stressing for a little bit. I know its not much of a help but I know for me when i get bad news I need to remove myself from the situation. But dont give up thats the worst thing to do. I live with CF and I know its sucky. I hope that things turn around or at least look up.
Megan

 

[MeggieLow]

Man that is a bad doctor visit. Maybe you two should get away for a little even if its just to a local bed and breakfast and take a break from stressing for a little bit. I know its not much of a help but I know for me when i get bad news I need to remove myself from the situation. But dont give up thats the worst thing to do. I live with CF and I know its sucky. I hope that things turn around or at least look up.
Megan

 

[MeggieLow]

Man that is a bad doctor visit. Maybe you two should get away for a little even if its just to a local bed and breakfast and take a break from stressing for a little bit. I know its not much of a help but I know for me when i get bad news I need to remove myself from the situation. But dont give up thats the worst thing to do. I live with CF and I know its sucky. I hope that things turn around or at least look up.
<br />Megan

 

[ej0820]

I just wanted to say, I know how you feel. I think I may be nearing a hospital stay because I just feel like sh**. My PFTs have been slowly dropping, even more in the last couple years (I'm at 50%, high 40s when I'm feeling the way I have been). I feel useless and hopeless all at the same time. I think to myself, "Well, if you're seriously on the low end of your CF lifespan, then just start enjoying whatever you want and do what you can."...but that's so freaking hard to do when anything you enjoy requires at least a little more energy than you've got and breathing!

I'm sorry my post is just as a downer as yours, but know that I feel exactly how you feel. It sucks.

 

[ej0820]

I just wanted to say, I know how you feel. I think I may be nearing a hospital stay because I just feel like sh**. My PFTs have been slowly dropping, even more in the last couple years (I'm at 50%, high 40s when I'm feeling the way I have been). I feel useless and hopeless all at the same time. I think to myself, "Well, if you're seriously on the low end of your CF lifespan, then just start enjoying whatever you want and do what you can."...but that's so freaking hard to do when anything you enjoy requires at least a little more energy than you've got and breathing!

I'm sorry my post is just as a downer as yours, but know that I feel exactly how you feel. It sucks.

 

[ej0820]

I just wanted to say, I know how you feel. I think I may be nearing a hospital stay because I just feel like sh**. My PFTs have been slowly dropping, even more in the last couple years (I'm at 50%, high 40s when I'm feeling the way I have been). I feel useless and hopeless all at the same time. I think to myself, "Well, if you're seriously on the low end of your CF lifespan, then just start enjoying whatever you want and do what you can."...but that's so freaking hard to do when anything you enjoy requires at least a little more energy than you've got and breathing!
<br />
<br />I'm sorry my post is just as a downer as yours, but know that I feel exactly how you feel. It sucks.

 

[mike0122]

Thank you for the replies. I may take the advice of just disappearing for a day or two with my wife. I've been thinking of doing that anyway.

Erin, thank you for posting. I am sorry about your situation as I am mine. I guess it sucks to be us and it sucks to have CF. Hopefully you are qualified for a transplant if it gets to that point. I can only imagine having both CF and Asthma.

I am not sure if it has helped to get this out but since I don't have much of a family, just my wife and I. I needed to get it out.

 

[mike0122]

Thank you for the replies. I may take the advice of just disappearing for a day or two with my wife. I've been thinking of doing that anyway.

Erin, thank you for posting. I am sorry about your situation as I am mine. I guess it sucks to be us and it sucks to have CF. Hopefully you are qualified for a transplant if it gets to that point. I can only imagine having both CF and Asthma.

I am not sure if it has helped to get this out but since I don't have much of a family, just my wife and I. I needed to get it out.

 

[mike0122]

Thank you for the replies. I may take the advice of just disappearing for a day or two with my wife. I've been thinking of doing that anyway.
<br />
<br />Erin, thank you for posting. I am sorry about your situation as I am mine. I guess it sucks to be us and it sucks to have CF. Hopefully you are qualified for a transplant if it gets to that point. I can only imagine having both CF and Asthma.
<br />
<br />I am not sure if it has helped to get this out but since I don't have much of a family, just my wife and I. I needed to get it out.

 

[rubyroselee]

Hi Mike,

I'm sorry you had such a rough appointment. However, I don't think all hope is lost when it comes to a transplant. I would definitely seek a second opinion, as there are transplant doctors out there who take on more complicated cases. I am not sure of all the risks involved with your liver issues and transplant, but I do know of a fellow CFer who had a liver transplant and is now undergoing a lung transplant as well. I don't think that it is totally impossible, but I could be wrong.

But, if lung transplant is not a possibility, then you need to LIVE! There are so many people who live for many many years with lower lung functions and live a very full and productive life. I sure hope that you can find the inner strength to push forward and not to let this get you down.

 

[rubyroselee]

Hi Mike,

I'm sorry you had such a rough appointment. However, I don't think all hope is lost when it comes to a transplant. I would definitely seek a second opinion, as there are transplant doctors out there who take on more complicated cases. I am not sure of all the risks involved with your liver issues and transplant, but I do know of a fellow CFer who had a liver transplant and is now undergoing a lung transplant as well. I don't think that it is totally impossible, but I could be wrong.

But, if lung transplant is not a possibility, then you need to LIVE! There are so many people who live for many many years with lower lung functions and live a very full and productive life. I sure hope that you can find the inner strength to push forward and not to let this get you down.

 

[rubyroselee]

Hi Mike,
<br />
<br />I'm sorry you had such a rough appointment. However, I don't think all hope is lost when it comes to a transplant. I would definitely seek a second opinion, as there are transplant doctors out there who take on more complicated cases. I am not sure of all the risks involved with your liver issues and transplant, but I do know of a fellow CFer who had a liver transplant and is now undergoing a lung transplant as well. I don't think that it is totally impossible, but I could be wrong.
<br />
<br />But, if lung transplant is not a possibility, then you need to LIVE! There are so many people who live for many many years with lower lung functions and live a very full and productive life. I sure hope that you can find the inner strength to push forward and not to let this get you down.

 

[ymikhale]

Just to echo Leah, there is a member here, don't remember her name though, she had double lung & liver transplant at the same time if i am not mistaken, and she was doing pretty well, i think she got transplanted many years ago.
You might want to search the transplant forum.

good luck & I hope things look up for you

 

[ymikhale]

Just to echo Leah, there is a member here, don't remember her name though, she had double lung & liver transplant at the same time if i am not mistaken, and she was doing pretty well, i think she got transplanted many years ago.
You might want to search the transplant forum.

good luck & I hope things look up for you

 

[ymikhale]

Just to echo Leah, there is a member here, don't remember her name though, she had double lung & liver transplant at the same time if i am not mistaken, and she was doing pretty well, i think she got transplanted many years ago.
<br />You might want to search the transplant forum.
<br />
<br />good luck & I hope things look up for you

 

[moxie1]

Mike,

First of all, I don't believe that this is your new baseline. The doctors do not know everything and you CAN increase your pfts. You might just be in a rough spot that will get better over time. Do you exercise? Do strength training? Are you compliant with your treatments?

Have you looked into more natural treatments?
To name a few, n-acetyl cysteine, oil of oregano (taken by mouth, not nebulized), Vitamin D3, and magnesium are some things that have helped me. I do not take them all, just a few. I try different things (one at a time), see how my body reacts, and then decide whether to continue or not.

My FEV1 is on an incline, not a decline, which it had been. I am 34 years old (35 next month), I've dealt with hemoptysis and have cultured the worst kind of cepacia for over 15 years. My FEV1 at last visit was 74%. If I had listened to everything the doctors told me, my health would be alot worse right now. I love my doctor and listen very carefully to his advice. Still, there are times when I listen to myself more. I know my body better than anyone else.

Check out sharktank.org Several individuals are trying transdermal BITC (benzyl isothiocyanate). The theory is that it gets a protein working that does the same thing as our faulty CFTR. If it works, we won't need gene therapy or Vertex. Read Melanie's Blog on this site (start at the beginning). She explains things much better than I ever could.

 

[moxie1]

Mike,

First of all, I don't believe that this is your new baseline. The doctors do not know everything and you CAN increase your pfts. You might just be in a rough spot that will get better over time. Do you exercise? Do strength training? Are you compliant with your treatments?

Have you looked into more natural treatments?
To name a few, n-acetyl cysteine, oil of oregano (taken by mouth, not nebulized), Vitamin D3, and magnesium are some things that have helped me. I do not take them all, just a few. I try different things (one at a time), see how my body reacts, and then decide whether to continue or not.

My FEV1 is on an incline, not a decline, which it had been. I am 34 years old (35 next month), I've dealt with hemoptysis and have cultured the worst kind of cepacia for over 15 years. My FEV1 at last visit was 74%. If I had listened to everything the doctors told me, my health would be alot worse right now. I love my doctor and listen very carefully to his advice. Still, there are times when I listen to myself more. I know my body better than anyone else.

Check out sharktank.org Several individuals are trying transdermal BITC (benzyl isothiocyanate). The theory is that it gets a protein working that does the same thing as our faulty CFTR. If it works, we won't need gene therapy or Vertex. Read Melanie's Blog on this site (start at the beginning). She explains things much better than I ever could.