W
welshwitch
Guest
Prednisone is awesome for opening up the airways! You should start feeling better in no time.
Not a great Dr's appt.
- Thread starter KMV77
- Start date
W
welshwitch
Guest
Prednisone is awesome for opening up the airways! You should start feeling better in no time.
Get a new doctor.
Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
Get a new doctor.
Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
Get a new doctor.
<br />
<br />Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
<br />
<br />I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
<br />
<br />Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
<br />
<br />Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
<br />
<br />Any doctor who has a CF patient below 25% FEV1 and has not set up an evaluation at a TX center....or at the very least, mentioned the need for a TX, is not doing their job.
<br />
<br />I was stable for years, too. Thank GOD my CF doc finally encouraged me to face my reality and get evaluated. I was listed and 6 weeks later, I got double pnemonia and I got a TX a few weeks later.
<br />
<br />Getting a TX evaluation isn't scary at all. But waiting until it's too late is. If I were you, I would demand an evaluation or switch doctors.
<br />
<br />Doesn't ANYONE else out there agree? Or am I nuts? Kevin needs our help and support.
I agree with you Lex i just didn't want to freak him out anymore, but i guess you're right, his doc SHOULD have been mentioning it about 10% of FEV1 ago. My FEV1 is now in the low thirties and we're getting ready to evaluate me and have been discussing it for at least a year now.
Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
Good luck.
Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
Good luck.
I agree with you Lex i just didn't want to freak him out anymore, but i guess you're right, his doc SHOULD have been mentioning it about 10% of FEV1 ago. My FEV1 is now in the low thirties and we're getting ready to evaluate me and have been discussing it for at least a year now.
Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
Good luck.
Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
Good luck.
I agree with you Lex i just didn't want to freak him out anymore, but i guess you're right, his doc SHOULD have been mentioning it about 10% of FEV1 ago. My FEV1 is now in the low thirties and we're getting ready to evaluate me and have been discussing it for at least a year now.
<br />
<br />Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
<br />
<br />Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
<br />
<br />Good luck.
<br />
<br />Kev talk to your doc and be firm, as Lex says, at 23% if you get a bad pneumonia you could go downhill fast and it will be too late. You may be stable now, but your doc can't predict what might happen in the future and it's your life he/she is risking, not theirs.
<br />
<br />Whenever i feel like i'm being annoying by arguing with my doctor and being demanding, I just keep telling myself, there is no point being the sweetest, most popular girl in the cemetery.
<br />
<br />Good luck.
I agree 100% with Lex. After I posted here Kevin private messaged me since we hadn't caught up in a while. He and I share the same mutation and also I used to see his doctor so we've been in contact before. I advised him that not only should he start tx eval ASAP through HUP he should cross list at Columbia and while there get a second opinion (or what people call on this site..a consult right?) about his care regimen too. I explained that once you are evaluated the tx team does everything in their power to make sure you have exausted every option out there other than new lungs including hooking you up with a respiratory rehab program. In my opinion he is doing so many things right (working out, compliancy with treatments, etc.) but that he may have benefitted from more abx over the years. Whether they may help now or not I don't know but if I were in his shoes I'd sure want to be finding out. And remember Kevin just because you've been seeing him forever doesn't mean you can't seek the advice of another doctor. The only person you are married to is your wife and kids
I agree 100% with Lex. After I posted here Kevin private messaged me since we hadn't caught up in a while. He and I share the same mutation and also I used to see his doctor so we've been in contact before. I advised him that not only should he start tx eval ASAP through HUP he should cross list at Columbia and while there get a second opinion (or what people call on this site..a consult right?) about his care regimen too. I explained that once you are evaluated the tx team does everything in their power to make sure you have exausted every option out there other than new lungs including hooking you up with a respiratory rehab program. In my opinion he is doing so many things right (working out, compliancy with treatments, etc.) but that he may have benefitted from more abx over the years. Whether they may help now or not I don't know but if I were in his shoes I'd sure want to be finding out. And remember Kevin just because you've been seeing him forever doesn't mean you can't seek the advice of another doctor. The only person you are married to is your wife and kids
I agree 100% with Lex. After I posted here Kevin private messaged me since we hadn't caught up in a while. He and I share the same mutation and also I used to see his doctor so we've been in contact before. I advised him that not only should he start tx eval ASAP through HUP he should cross list at Columbia and while there get a second opinion (or what people call on this site..a consult right?) about his care regimen too. I explained that once you are evaluated the tx team does everything in their power to make sure you have exausted every option out there other than new lungs including hooking you up with a respiratory rehab program. In my opinion he is doing so many things right (working out, compliancy with treatments, etc.) but that he may have benefitted from more abx over the years. Whether they may help now or not I don't know but if I were in his shoes I'd sure want to be finding out. And remember Kevin just because you've been seeing him forever doesn't mean you can't seek the advice of another doctor. The only person you are married to is your wife and kids