frustrating clinic appointment

[rubyroselee]

I went to my clinic appointment today. I was quite pleased with my PFTs since they were 1% higher than in December. But for some reason, my doctor thinks I'm "losing an edge" on my numbers. He basically gave me two options - either start HTS every day or alternate between HTS and a double dose of Pulmozyme every other day. He said he wants to try this treatment because my numbers were down slightly from last year at this time. So when I left my appointment, I studied my PFTs for the past 5 years and absolutely nothing has changed - my numbers are completely the same....and have been for many many years. So I am confused why he thinks I'm losing ground...grrr.

On another annoying note, I am still having problems with low blood sugars in the morning. I have been seeing a local endocrinologist for it, but I honestly think it's CF related. I truly believe that there is a rebound effect with CF in the morning if you eat high-sugar breakfasts, where the pancreas releases too much insulin to compensate for the slack/slowness. But he doesn't seem to agree. So he basically said I need to followup with the endocrinologist to figure out what's going on or he will consider taking away my driver's license. He feels uneasy about me driving with the chance I could pass out from low sugars. GRRRR!!!

I'm just so frustrated with the way he was so pushy with me today. I completely understand that he has an obligation to treat his patients and be responsible for that, but to go as far to take away my license!?!?!? Can he even do that? I mean, diabetics still drive and they have a chance of having low (or high) blood sugars.

Then he wants me to followup with a gastroenterologist for my severe reflux because he can't get that under control either.

I guess I'm just so frustrated because I just got a new job and the last thing I want is for my health to get in the way right now. I just can't be taking all sorts of time off for tests and appointments. I think he's making a mountain out of a molehill about everything. It just makes me want to avoid my CF doctor at this point because he's not listening to my concerns and he's only concerned about me being a liability. He's not listening to *my* concerns and *my* point of view of *my* health issues.

UGH GRRR

Sorry, I'm just in a "vent"y mood. Thanks for listening.

 

[rubyroselee]

I went to my clinic appointment today. I was quite pleased with my PFTs since they were 1% higher than in December. But for some reason, my doctor thinks I'm "losing an edge" on my numbers. He basically gave me two options - either start HTS every day or alternate between HTS and a double dose of Pulmozyme every other day. He said he wants to try this treatment because my numbers were down slightly from last year at this time. So when I left my appointment, I studied my PFTs for the past 5 years and absolutely nothing has changed - my numbers are completely the same....and have been for many many years. So I am confused why he thinks I'm losing ground...grrr.

On another annoying note, I am still having problems with low blood sugars in the morning. I have been seeing a local endocrinologist for it, but I honestly think it's CF related. I truly believe that there is a rebound effect with CF in the morning if you eat high-sugar breakfasts, where the pancreas releases too much insulin to compensate for the slack/slowness. But he doesn't seem to agree. So he basically said I need to followup with the endocrinologist to figure out what's going on or he will consider taking away my driver's license. He feels uneasy about me driving with the chance I could pass out from low sugars. GRRRR!!!

I'm just so frustrated with the way he was so pushy with me today. I completely understand that he has an obligation to treat his patients and be responsible for that, but to go as far to take away my license!?!?!? Can he even do that? I mean, diabetics still drive and they have a chance of having low (or high) blood sugars.

Then he wants me to followup with a gastroenterologist for my severe reflux because he can't get that under control either.

I guess I'm just so frustrated because I just got a new job and the last thing I want is for my health to get in the way right now. I just can't be taking all sorts of time off for tests and appointments. I think he's making a mountain out of a molehill about everything. It just makes me want to avoid my CF doctor at this point because he's not listening to my concerns and he's only concerned about me being a liability. He's not listening to *my* concerns and *my* point of view of *my* health issues.

UGH GRRR

Sorry, I'm just in a "vent"y mood. Thanks for listening.

 

[rubyroselee]

I went to my clinic appointment today. I was quite pleased with my PFTs since they were 1% higher than in December. But for some reason, my doctor thinks I'm "losing an edge" on my numbers. He basically gave me two options - either start HTS every day or alternate between HTS and a double dose of Pulmozyme every other day. He said he wants to try this treatment because my numbers were down slightly from last year at this time. So when I left my appointment, I studied my PFTs for the past 5 years and absolutely nothing has changed - my numbers are completely the same....and have been for many many years. So I am confused why he thinks I'm losing ground...grrr.
<br />
<br />On another annoying note, I am still having problems with low blood sugars in the morning. I have been seeing a local endocrinologist for it, but I honestly think it's CF related. I truly believe that there is a rebound effect with CF in the morning if you eat high-sugar breakfasts, where the pancreas releases too much insulin to compensate for the slack/slowness. But he doesn't seem to agree. So he basically said I need to followup with the endocrinologist to figure out what's going on or he will consider taking away my driver's license. He feels uneasy about me driving with the chance I could pass out from low sugars. GRRRR!!!
<br />
<br />I'm just so frustrated with the way he was so pushy with me today. I completely understand that he has an obligation to treat his patients and be responsible for that, but to go as far to take away my license!?!?!? Can he even do that? I mean, diabetics still drive and they have a chance of having low (or high) blood sugars.
<br />
<br />Then he wants me to followup with a gastroenterologist for my severe reflux because he can't get that under control either.
<br />
<br />I guess I'm just so frustrated because I just got a new job and the last thing I want is for my health to get in the way right now. I just can't be taking all sorts of time off for tests and appointments. I think he's making a mountain out of a molehill about everything. It just makes me want to avoid my CF doctor at this point because he's not listening to my concerns and he's only concerned about me being a liability. He's not listening to *my* concerns and *my* point of view of *my* health issues.
<br />
<br />UGH GRRR
<br />
<br />Sorry, I'm just in a "vent"y mood. Thanks for listening.

 

[JORDYSMOM]

Wow, Leah. I'm sorry you had such a frustrating appt. I think I'd e-mail him or call, and bring it to his attention that your numbers are exactly the same. Who knows why he's thinking they are lower, but I'd talk to him about it, and ask him to show you what he's seeing.

You might check into the driving laws in your state. Here, diabetics are required to carry candy with them in the car. I would think that taking a person's license would require more than one doctor's opinion. Definitely something to check into. I know you don't want to be a danger to yourself or others, but nobody wants to lose their independence either.

I hope you can sort these appts out with your new job. It sounds very stressful to have to worry about taking a lot of time off. Vent anytime. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

Wow, Leah. I'm sorry you had such a frustrating appt. I think I'd e-mail him or call, and bring it to his attention that your numbers are exactly the same. Who knows why he's thinking they are lower, but I'd talk to him about it, and ask him to show you what he's seeing.

You might check into the driving laws in your state. Here, diabetics are required to carry candy with them in the car. I would think that taking a person's license would require more than one doctor's opinion. Definitely something to check into. I know you don't want to be a danger to yourself or others, but nobody wants to lose their independence either.

I hope you can sort these appts out with your new job. It sounds very stressful to have to worry about taking a lot of time off. Vent anytime. <img src="i/expressions/heart.gif" border="0">

Stacey

 

[JORDYSMOM]

Wow, Leah. I'm sorry you had such a frustrating appt. I think I'd e-mail him or call, and bring it to his attention that your numbers are exactly the same. Who knows why he's thinking they are lower, but I'd talk to him about it, and ask him to show you what he's seeing.
<br />
<br />You might check into the driving laws in your state. Here, diabetics are required to carry candy with them in the car. I would think that taking a person's license would require more than one doctor's opinion. Definitely something to check into. I know you don't want to be a danger to yourself or others, but nobody wants to lose their independence either.
<br />
<br />I hope you can sort these appts out with your new job. It sounds very stressful to have to worry about taking a lot of time off. Vent anytime. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey

 

[Printer]

I have been there. I had a CF Doctor who just wouldn't listen, I got a new CF Doctor.

You may need to see someone with a CF background regarding your diabetes. I was dx with diabetes by my primary only to have my CF people go crazy. Then I saw a Doctor in the Diabetic Center at MGH and after more extensive testing, they found I do not have Diabetes.

Good luck,
Bill

 

[Printer]

I have been there. I had a CF Doctor who just wouldn't listen, I got a new CF Doctor.

You may need to see someone with a CF background regarding your diabetes. I was dx with diabetes by my primary only to have my CF people go crazy. Then I saw a Doctor in the Diabetic Center at MGH and after more extensive testing, they found I do not have Diabetes.

Good luck,
Bill

 

[Printer]

I have been there. I had a CF Doctor who just wouldn't listen, I got a new CF Doctor.
<br />
<br />You may need to see someone with a CF background regarding your diabetes. I was dx with diabetes by my primary only to have my CF people go crazy. Then I saw a Doctor in the Diabetic Center at MGH and after more extensive testing, they found I do not have Diabetes.
<br />
<br />Good luck,
<br />Bill

 

[hmw]

I am sorry that your clinic appt was so frustrating. Esp after all the hard work you've put into maintaining your lung function for so many years, to have this doctor picking at you about it must have been very frustrating. I agree with Stacey about showing him YOUR documentation of how you've been next time around and asking him to show you otherwise!

Re. potentially losing your license- yes, one dr can initiate steps to make this happen, unfortunately. I understand how frustrating this is (I have a health condition that can result in this as well) and know the dilemma. You NEED your independence, but also need to be safe. So this needs to be well-managed... I wish you the best there in juggling all of your obligations to make that happen. It is not easy.

How low does your sugar drop? This is something I would like to know more about, perhaps off this thread. Emily's glucose dropped to 45 2hrs-post during her first ogtt and past labs show glucose levels in the low 50's in the hours after breakfast. This concerns me, and I don't know what to make of it. Her cf dr doesn't seem too worried or feel it's connected to her cf either; but I'm not so sure.

 

[hmw]

I am sorry that your clinic appt was so frustrating. Esp after all the hard work you've put into maintaining your lung function for so many years, to have this doctor picking at you about it must have been very frustrating. I agree with Stacey about showing him YOUR documentation of how you've been next time around and asking him to show you otherwise!

Re. potentially losing your license- yes, one dr can initiate steps to make this happen, unfortunately. I understand how frustrating this is (I have a health condition that can result in this as well) and know the dilemma. You NEED your independence, but also need to be safe. So this needs to be well-managed... I wish you the best there in juggling all of your obligations to make that happen. It is not easy.

How low does your sugar drop? This is something I would like to know more about, perhaps off this thread. Emily's glucose dropped to 45 2hrs-post during her first ogtt and past labs show glucose levels in the low 50's in the hours after breakfast. This concerns me, and I don't know what to make of it. Her cf dr doesn't seem too worried or feel it's connected to her cf either; but I'm not so sure.

 

[hmw]

I am sorry that your clinic appt was so frustrating. Esp after all the hard work you've put into maintaining your lung function for so many years, to have this doctor picking at you about it must have been very frustrating. I agree with Stacey about showing him YOUR documentation of how you've been next time around and asking him to show you otherwise!
<br />
<br />Re. potentially losing your license- yes, one dr can initiate steps to make this happen, unfortunately. I understand how frustrating this is (I have a health condition that can result in this as well) and know the dilemma. You NEED your independence, but also need to be safe. So this needs to be well-managed... I wish you the best there in juggling all of your obligations to make that happen. It is not easy.
<br />
<br />How low does your sugar drop? This is something I would like to know more about, perhaps off this thread. Emily's glucose dropped to 45 2hrs-post during her first ogtt and past labs show glucose levels in the low 50's in the hours after breakfast. This concerns me, and I don't know what to make of it. Her cf dr doesn't seem too worried or feel it's connected to her cf either; but I'm not so sure.

 

[cf4life]

Just wanted to say that even if your lung function is unchanged starting HTS may not be a bad thing; it works really well for many people. I definitely recommend it.

 

[cf4life]

Just wanted to say that even if your lung function is unchanged starting HTS may not be a bad thing; it works really well for many people. I definitely recommend it.

 

[cf4life]

Just wanted to say that even if your lung function is unchanged starting HTS may not be a bad thing; it works really well for many people. I definitely recommend it.

 

[Jeana]

I am sorry your appointment went badly, especially in light of the fact that your PFTs have stayed the same. CFers usually lose 1-2% per year (although I am sure where I found that fact, I will have to look). Anyway, what I wanted to talk with you about is whether you are using a pump with a continuous glucose monitoring system? My endocrinologist talked with me about one at my last appointment and I am going to get one. It monitors you blood sugar in between times to see what is happening. I hope that things begin looking up. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jeana]

I am sorry your appointment went badly, especially in light of the fact that your PFTs have stayed the same. CFers usually lose 1-2% per year (although I am sure where I found that fact, I will have to look). Anyway, what I wanted to talk with you about is whether you are using a pump with a continuous glucose monitoring system? My endocrinologist talked with me about one at my last appointment and I am going to get one. It monitors you blood sugar in between times to see what is happening. I hope that things begin looking up. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jeana]

I am sorry your appointment went badly, especially in light of the fact that your PFTs have stayed the same. CFers usually lose 1-2% per year (although I am sure where I found that fact, I will have to look). Anyway, what I wanted to talk with you about is whether you are using a pump with a continuous glucose monitoring system? My endocrinologist talked with me about one at my last appointment and I am going to get one. It monitors you blood sugar in between times to see what is happening. I hope that things begin looking up. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Cherylwithone]

Wow Leah, I really wish Malora and could hav gone into to Boston to see yo. I think having a friendly face would have helped after that appointment.

Can you have them do the testing at the clinic for your sugars? If he going to take your license away then he needs to help you get to the bottom of this and meet you half way.

Was Dr. U in a bad mood perhaps? Let me know whenyour going back into Boston. I will go in for at least moral support.

{{{Hugs}}}

 

[Cherylwithone]

Wow Leah, I really wish Malora and could hav gone into to Boston to see yo. I think having a friendly face would have helped after that appointment.

Can you have them do the testing at the clinic for your sugars? If he going to take your license away then he needs to help you get to the bottom of this and meet you half way.

Was Dr. U in a bad mood perhaps? Let me know whenyour going back into Boston. I will go in for at least moral support.

{{{Hugs}}}