frustrating clinic appointment

Cherylwithone · Mar 18, 2011

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}}}

rubyroselee · Mar 19, 2011

Hi everyone,

Thanks so much for your kind words and support. I am feeling a little better today, but not much. I am going to attempt to get into my endocrinologist for a blood testing of the sugars next week before I start my new job. The only alternative to doing the in-office testing is to go inpatient for 3 days and do a fasting study that way. So naturally I'm hoping they can just do the in-office procedure instead. Apparently they need to do some blood work when my sugars are less than 50. I recall SEVERAL people on here having the same issues with morning blood sugar drops, so I know in my gut this is all CF related, but he just won't listen to me. He said he's never heard of this issue before and does not think it's CF related. But I have had these symptoms for 10+ years, only recently getting worse, which I why I brought it to his attention.

I think I will call him next week. I just need to have a little chit-chat with him about what he sees in my PFTs and hopefully have some supporting info on the hypoglycemia in CF to share with him as well.

Thanks again everyone.

rubyroselee · Mar 19, 2011

Hi everyone,

Thanks so much for your kind words and support. I am feeling a little better today, but not much. I am going to attempt to get into my endocrinologist for a blood testing of the sugars next week before I start my new job. The only alternative to doing the in-office testing is to go inpatient for 3 days and do a fasting study that way. So naturally I'm hoping they can just do the in-office procedure instead. Apparently they need to do some blood work when my sugars are less than 50. I recall SEVERAL people on here having the same issues with morning blood sugar drops, so I know in my gut this is all CF related, but he just won't listen to me. He said he's never heard of this issue before and does not think it's CF related. But I have had these symptoms for 10+ years, only recently getting worse, which I why I brought it to his attention.

I think I will call him next week. I just need to have a little chit-chat with him about what he sees in my PFTs and hopefully have some supporting info on the hypoglycemia in CF to share with him as well.

Thanks again everyone.

rubyroselee · Mar 19, 2011

Hi everyone,
 
 Thanks so much for your kind words and support. I am feeling a little better today, but not much. I am going to attempt to get into my endocrinologist for a blood testing of the sugars next week before I start my new job. The only alternative to doing the in-office testing is to go inpatient for 3 days and do a fasting study that way. So naturally I'm hoping they can just do the in-office procedure instead. Apparently they need to do some blood work when my sugars are less than 50. I recall SEVERAL people on here having the same issues with morning blood sugar drops, so I know in my gut this is all CF related, but he just won't listen to me. He said he's never heard of this issue before and does not think it's CF related. But I have had these symptoms for 10+ years, only recently getting worse, which I why I brought it to his attention.
 
 I think I will call him next week. I just need to have a little chit-chat with him about what he sees in my PFTs and hopefully have some supporting info on the hypoglycemia in CF to share with him as well.
 
 Thanks again everyone.

AnD · Mar 19, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: 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.</end quote></div>

Sounds very frustrating! I hate it when a doctor (or other health professional) just dismisses what I say (I had a bit of a surreal discussion with a nutritionist last time, ha).

May I ask why you aren't on HS or Pulmozyme? Or is it just an different schedule than your doctor wants? And I would bring in your past pft's to your next visit and discuss with him why he thinks you are losing your "edge". Are you getting sick more often, but still able to get up to baseline or something similar that is non- numbers related? (nothing like having your numbers be the same or go up even and the doctor being disappointed...grrrr...).

If you have a blood glucose meter, you can check your own numbers at home, too, and see if it goes along with what you are trying to explain to your doctors. That way, you have "proof" of what you are trying to tell them. Test right when you get up, and then test at one hour after you started eating, then 2 hours, and then 3 hours. If you want to really go for it, lol, do it every 30 minutes. From the people I've talked to who have CFRD, a midmorning drop in blood sugar is VERY common! Mine does that, whether I take my long lasting/fast insulin mix or regular fast insulin. My personal thought is that it is related to hydration, but who knows? <img src="i/expressions/face-icon-small-wink.gif" border="0"> And, my first symptom (hate to tell you this) of CFRD was periodic low blood sugar. This happened for several years before I was diagnosed with CFRD.

One thing you could ask for from your endo is a blood glucose monitor test, that usually lasts 3 days to 7 days. When I had mine done, they put the monitor on me, gave me a downloadable glucose monitor to check my bloodsugars, and turned me loose for a week (you can shower, swim, etc. with it on, it's just a quarter size disk with a rounded top and a sticky back <img src="i/expressions/face-icon-small-wink.gif" border="0"> with a sensor probe run under the skin). At the end of the week, I went back in and they downloaded the info from my meter and the glucose monitor and gave my endo a printout. It CONFIRMED WHAT I HAD BEEN TELLING MY DOCTOR about how my blood sugars run (high in the morning, better as the day goes on) along with the fact that my blood sugar naturally rises about 9-10am, whether I have eaten or not.

Do carry sugar of some form with you at all times if you are having bouts with low blood sugar and don't already carry it. And do get a meter, come to think of it, if you don't have one. Make sure your doctor knows that you never leave the house without your sugar, and take your meter with you. Tell him you will check it before you get behind the wheel too. It sounds like he isn't convinced that you are taking proper precautions, so the more you grind it into his brain that you are, hope fully he will back off his threat (which did seem a little over the top, IMHO).

Is there an Endo you can see who has at least gone to a CF conference and went to a session about CF and pancreatic/diabetes related problems? That can make a WORLD of difference!

The GI doctor sounds like a good idea, though. Reflux can make lung issues worse, on top of the rest of it.

Good luck with everything- I hope your doctor was just having a hard day.

AnD · Mar 19, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: 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.</end quote>

Sounds very frustrating! I hate it when a doctor (or other health professional) just dismisses what I say (I had a bit of a surreal discussion with a nutritionist last time, ha).

May I ask why you aren't on HS or Pulmozyme? Or is it just an different schedule than your doctor wants? And I would bring in your past pft's to your next visit and discuss with him why he thinks you are losing your "edge". Are you getting sick more often, but still able to get up to baseline or something similar that is non- numbers related? (nothing like having your numbers be the same or go up even and the doctor being disappointed...grrrr...).

If you have a blood glucose meter, you can check your own numbers at home, too, and see if it goes along with what you are trying to explain to your doctors. That way, you have "proof" of what you are trying to tell them. Test right when you get up, and then test at one hour after you started eating, then 2 hours, and then 3 hours. If you want to really go for it, lol, do it every 30 minutes. From the people I've talked to who have CFRD, a midmorning drop in blood sugar is VERY common! Mine does that, whether I take my long lasting/fast insulin mix or regular fast insulin. My personal thought is that it is related to hydration, but who knows? <img src="i/expressions/face-icon-small-wink.gif" border="0"> And, my first symptom (hate to tell you this) of CFRD was periodic low blood sugar. This happened for several years before I was diagnosed with CFRD.

One thing you could ask for from your endo is a blood glucose monitor test, that usually lasts 3 days to 7 days. When I had mine done, they put the monitor on me, gave me a downloadable glucose monitor to check my bloodsugars, and turned me loose for a week (you can shower, swim, etc. with it on, it's just a quarter size disk with a rounded top and a sticky back <img src="i/expressions/face-icon-small-wink.gif" border="0"> with a sensor probe run under the skin). At the end of the week, I went back in and they downloaded the info from my meter and the glucose monitor and gave my endo a printout. It CONFIRMED WHAT I HAD BEEN TELLING MY DOCTOR about how my blood sugars run (high in the morning, better as the day goes on) along with the fact that my blood sugar naturally rises about 9-10am, whether I have eaten or not.

Do carry sugar of some form with you at all times if you are having bouts with low blood sugar and don't already carry it. And do get a meter, come to think of it, if you don't have one. Make sure your doctor knows that you never leave the house without your sugar, and take your meter with you. Tell him you will check it before you get behind the wheel too. It sounds like he isn't convinced that you are taking proper precautions, so the more you grind it into his brain that you are, hope fully he will back off his threat (which did seem a little over the top, IMHO).

Is there an Endo you can see who has at least gone to a CF conference and went to a session about CF and pancreatic/diabetes related problems? That can make a WORLD of difference!

The GI doctor sounds like a good idea, though. Reflux can make lung issues worse, on top of the rest of it.

Good luck with everything- I hope your doctor was just having a hard day.

AnD · Mar 19, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: 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.</end quote>
 
 Sounds very frustrating! I hate it when a doctor (or other health professional) just dismisses what I say (I had a bit of a surreal discussion with a nutritionist last time, ha).
 
 May I ask why you aren't on HS or Pulmozyme? Or is it just an different schedule than your doctor wants? And I would bring in your past pft's to your next visit and discuss with him why he thinks you are losing your "edge". Are you getting sick more often, but still able to get up to baseline or something similar that is non- numbers related? (nothing like having your numbers be the same or go up even and the doctor being disappointed...grrrr...).
 
 If you have a blood glucose meter, you can check your own numbers at home, too, and see if it goes along with what you are trying to explain to your doctors. That way, you have "proof" of what you are trying to tell them. Test right when you get up, and then test at one hour after you started eating, then 2 hours, and then 3 hours. If you want to really go for it, lol, do it every 30 minutes. From the people I've talked to who have CFRD, a midmorning drop in blood sugar is VERY common! Mine does that, whether I take my long lasting/fast insulin mix or regular fast insulin. My personal thought is that it is related to hydration, but who knows? <img src="i/expressions/face-icon-small-wink.gif" border="0"> And, my first symptom (hate to tell you this) of CFRD was periodic low blood sugar. This happened for several years before I was diagnosed with CFRD.
 
 One thing you could ask for from your endo is a blood glucose monitor test, that usually lasts 3 days to 7 days. When I had mine done, they put the monitor on me, gave me a downloadable glucose monitor to check my bloodsugars, and turned me loose for a week (you can shower, swim, etc. with it on, it's just a quarter size disk with a rounded top and a sticky back <img src="i/expressions/face-icon-small-wink.gif" border="0"> with a sensor probe run under the skin). At the end of the week, I went back in and they downloaded the info from my meter and the glucose monitor and gave my endo a printout. It CONFIRMED WHAT I HAD BEEN TELLING MY DOCTOR about how my blood sugars run (high in the morning, better as the day goes on) along with the fact that my blood sugar naturally rises about 9-10am, whether I have eaten or not.
 
 Do carry sugar of some form with you at all times if you are having bouts with low blood sugar and don't already carry it. And do get a meter, come to think of it, if you don't have one. Make sure your doctor knows that you never leave the house without your sugar, and take your meter with you. Tell him you will check it before you get behind the wheel too. It sounds like he isn't convinced that you are taking proper precautions, so the more you grind it into his brain that you are, hope fully he will back off his threat (which did seem a little over the top, IMHO).
 
 Is there an Endo you can see who has at least gone to a CF conference and went to a session about CF and pancreatic/diabetes related problems? That can make a WORLD of difference!
 
 The GI doctor sounds like a good idea, though. Reflux can make lung issues worse, on top of the rest of it.
 
 Good luck with everything- I hope your doctor was just having a hard day.

rubyroselee · Mar 19, 2011

Hi Andee,

Thank you for the great advice. I think you gave me a lot of good ideas. I will ask my endo about doing the glucose monitoring, because I think that is a great idea. I can also show them that when I eat no sugar for breakfast that my sugars remain stable versus when I eat a high-sugar breakfast and they drop after 2-3 hours.

I will also see if I can get a glucose monitor from my CF doctor and tell him that I will check them before getting behind the wheel or that I will not drive during those low-blood sugar hours. I think that is a more logical option, rather than just taking away my license for something that I *know* is CF related.

I actually did some research online last night and found some information on REACTIVE HYPOGLYCEMIA, which is apparently common in CF. I am shocked that he has never heard of this before in CF, and I plan to educate him on it. I also plan on calling my old CF doctor, who is a genius with CF and research, and ask him if he has any info on this reactive hypoglycemia effect...and I'm sure he will.

I did find this interesting article on SPONTANEOUS hypoglycemia, which is somewhat related to what I am talking about. Apparently 15% of CFers have a problem with spontaneously low blood sugars in the morning, which is due to the malfunctioning pancreas. I plan to share this study with him as well.

Thank you so much for that great advice for my doctors. My goal at this point is to prove to them that this is CF related and that this in-depth testing and worry is really ridiculous.

rubyroselee · Mar 19, 2011

Hi Andee,

Thank you for the great advice. I think you gave me a lot of good ideas. I will ask my endo about doing the glucose monitoring, because I think that is a great idea. I can also show them that when I eat no sugar for breakfast that my sugars remain stable versus when I eat a high-sugar breakfast and they drop after 2-3 hours.

I will also see if I can get a glucose monitor from my CF doctor and tell him that I will check them before getting behind the wheel or that I will not drive during those low-blood sugar hours. I think that is a more logical option, rather than just taking away my license for something that I *know* is CF related.

I actually did some research online last night and found some information on REACTIVE HYPOGLYCEMIA, which is apparently common in CF. I am shocked that he has never heard of this before in CF, and I plan to educate him on it. I also plan on calling my old CF doctor, who is a genius with CF and research, and ask him if he has any info on this reactive hypoglycemia effect...and I'm sure he will.

I did find this interesting article on SPONTANEOUS hypoglycemia, which is somewhat related to what I am talking about. Apparently 15% of CFers have a problem with spontaneously low blood sugars in the morning, which is due to the malfunctioning pancreas. I plan to share this study with him as well.

Thank you so much for that great advice for my doctors. My goal at this point is to prove to them that this is CF related and that this in-depth testing and worry is really ridiculous.

rubyroselee · Mar 19, 2011

Hi Andee,
 
 Thank you for the great advice. I think you gave me a lot of good ideas. I will ask my endo about doing the glucose monitoring, because I think that is a great idea. I can also show them that when I eat no sugar for breakfast that my sugars remain stable versus when I eat a high-sugar breakfast and they drop after 2-3 hours.
 
 I will also see if I can get a glucose monitor from my CF doctor and tell him that I will check them before getting behind the wheel or that I will not drive during those low-blood sugar hours. I think that is a more logical option, rather than just taking away my license for something that I *know* is CF related.
 
 I actually did some research online last night and found some information on REACTIVE HYPOGLYCEMIA, which is apparently common in CF. I am shocked that he has never heard of this before in CF, and I plan to educate him on it. I also plan on calling my old CF doctor, who is a genius with CF and research, and ask him if he has any info on this reactive hypoglycemia effect...and I'm sure he will.
 
 I did find this interesting article on SPONTANEOUS hypoglycemia, which is somewhat related to what I am talking about. Apparently 15% of CFers have a problem with spontaneously low blood sugars in the morning, which is due to the malfunctioning pancreas. I plan to share this study with him as well.
 
 Thank you so much for that great advice for my doctors. My goal at this point is to prove to them that this is CF related and that this in-depth testing and worry is really ridiculous.

rubyroselee · Mar 19, 2011

Oh and by the way, I have been on Pulmozyme for years. He just wants me to try HTS (even though I did not tolerate it in the past). So my options were to do HTS daily in addition to Pulmozyme or to alternate between the two. I will give it a try again...but I have a feeling I'm not going to like it! <img src="i/expressions/face-icon-small-frown.gif" border="0">

rubyroselee · Mar 19, 2011

Oh and by the way, I have been on Pulmozyme for years. He just wants me to try HTS (even though I did not tolerate it in the past). So my options were to do HTS daily in addition to Pulmozyme or to alternate between the two. I will give it a try again...but I have a feeling I'm not going to like it! <img src="i/expressions/face-icon-small-frown.gif" border="0">

rubyroselee · Mar 19, 2011

Oh and by the way, I have been on Pulmozyme for years. He just wants me to try HTS (even though I did not tolerate it in the past). So my options were to do HTS daily in addition to Pulmozyme or to alternate between the two. I will give it a try again...but I have a feeling I'm not going to like it! <img src="i/expressions/face-icon-small-frown.gif" border="0">

windex125 · Mar 19, 2011

I think he sounded like a bully who was having a bad day. I can't beleive you have yr pft's written down for 5years. That is real determination on yr. part. It also sounds to me as though you take wonderful care of yourself. I think you need to look for a new doctor. I wld not stand for that kind of attitude. I do not have diabetes but my husband does and the morning numbers always seem to be low till he eats some breakfast. Good luck. Remember he has the education to treat you, but yr. the boss and yr. treatment shd be a 2 way street. Pat-56/CF

windex125 · Mar 19, 2011

I think he sounded like a bully who was having a bad day. I can't beleive you have yr pft's written down for 5years. That is real determination on yr. part. It also sounds to me as though you take wonderful care of yourself. I think you need to look for a new doctor. I wld not stand for that kind of attitude. I do not have diabetes but my husband does and the morning numbers always seem to be low till he eats some breakfast. Good luck. Remember he has the education to treat you, but yr. the boss and yr. treatment shd be a 2 way street. Pat-56/CF

windex125 · Mar 19, 2011

I think he sounded like a bully who was having a bad day. I can't beleive you have yr pft's written down for 5years. That is real determination on yr. part. It also sounds to me as though you take wonderful care of yourself. I think you need to look for a new doctor. I wld not stand for that kind of attitude. I do not have diabetes but my husband does and the morning numbers always seem to be low till he eats some breakfast. Good luck. Remember he has the education to treat you, but yr. the boss and yr. treatment shd be a 2 way street. Pat-56/CF

AnD · Mar 19, 2011

<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad I actually said something useful, lol <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

When you tried the HS before, did you do albuterol or Xopenex before? And if it was the 7%, will your doctor let you try the 3% instead, or at least to start out with (you can mix it yourself if you can't find it premixed- you'll need 7% or 10% and .9%)? I know it took me at least 2 weeks to get used to it (that was 2 weeks of coughing h*ll), but after that, I actually like it, and if I had to pick one neb to skip, HS would not be it <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I know some people don't tolerate it at all (reactive airways flareup), so I hope that's not the case for you.

Do you happen to have the link about the reactive and spontaneous hypoglycemia? I would be interested to read it, and I know several other people who may be as well. I'd also like to take a print to my Endo next month (my endo has been to the cfrd seminars, but I still get that "hmmmm" look periodically, lol).

It sounds like you have a great plan! Good luck, and will say a prayer for your doctor to listen!

AnD · Mar 19, 2011

<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad I actually said something useful, lol <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

When you tried the HS before, did you do albuterol or Xopenex before? And if it was the 7%, will your doctor let you try the 3% instead, or at least to start out with (you can mix it yourself if you can't find it premixed- you'll need 7% or 10% and .9%)? I know it took me at least 2 weeks to get used to it (that was 2 weeks of coughing h*ll), but after that, I actually like it, and if I had to pick one neb to skip, HS would not be it <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I know some people don't tolerate it at all (reactive airways flareup), so I hope that's not the case for you.

Do you happen to have the link about the reactive and spontaneous hypoglycemia? I would be interested to read it, and I know several other people who may be as well. I'd also like to take a print to my Endo next month (my endo has been to the cfrd seminars, but I still get that "hmmmm" look periodically, lol).

It sounds like you have a great plan! Good luck, and will say a prayer for your doctor to listen!

AnD · Mar 19, 2011

<img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad I actually said something useful, lol <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
 When you tried the HS before, did you do albuterol or Xopenex before? And if it was the 7%, will your doctor let you try the 3% instead, or at least to start out with (you can mix it yourself if you can't find it premixed- you'll need 7% or 10% and .9%)? I know it took me at least 2 weeks to get used to it (that was 2 weeks of coughing h*ll), but after that, I actually like it, and if I had to pick one neb to skip, HS would not be it <img src="i/expressions/face-icon-small-tongue.gif" border="0"> . I know some people don't tolerate it at all (reactive airways flareup), so I hope that's not the case for you.
 
 Do you happen to have the link about the reactive and spontaneous hypoglycemia? I would be interested to read it, and I know several other people who may be as well. I'd also like to take a print to my Endo next month (my endo has been to the cfrd seminars, but I still get that "hmmmm" look periodically, lol).
 
 It sounds like you have a great plan! Good luck, and will say a prayer for your doctor to listen!

Ldude916 · Mar 19, 2011

I just wanted to echo the thoughts about the glucose monitoring test. I think having your Endo set up the 3 day glucose test is the correct step. It is a sensor that sits below your skin and monitors my glucose levels via interstitial fluid every 5 minutes, which shows patterns in your blood sugar levels. These sensors do NOT test your blood, and there could be as large as a 20% variance between your actual blood sugar and what the sensor is reading out - so you still must check your blood sugar via a finger prick to calibrate.

However, even analyzing the interstitial fluid and seeing patterns in your blood sugar will give your Endo the information he needs to treat your diabetes and your lows. My endo also had me do fasting blood sugars at HOME, so there was no need for me to be an inpatient for that. Did your Endo prescribe the quick acting pen that if you pass out from low sugars, someone can shoot you with this needle and it wakes you up enough to drink something highly sugary? Do you think you need a new Endo more familiar with CF?

I have an insulin pump and when you have a pump, you can actually get your own sensor that you insert yourself every 3 days to keep monitoring your glucose at home and bring your results to your doctor's appointments - so that is one benefit of the insulin pump. Another benefit is my sugars are much more in control, especially after eating and you don't have to poke yourself every time you eat and carry around all those annoying supplies!

As for your doctor not hearing your concerns - I think you're doing the right thing by researching things yourself and reaching out to the community for knowledge. Knowledge is your best defense to being your own advocate. I found that the doctors don't think of everything and bringing all of this to his attention is what you need to do. If your doctor still does not listen - I suggest finding another doctor that will listen and that you feel comfortable with. I have gone through 3 CF doctors before I found one that fit me and it was worth switching!!!

Oh, and HTS is awesome! I can't believe how much better I feel after starting the HTS. When I skip a dose (rarely) I really feel the negative impact to not doing it. At first it really makes your throat itch and brings on a lot of coughing, but you'll get used to it after a few days and those symptoms go away =)

Good luck!

frustrating clinic appointment

Cherylwithone

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windex125

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