Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads are better than one. Anybody have any experience or advice about this?
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2 Clinics
- Thread starter Pianist
- Start date
Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads are better than one. Anybody have any experience or advice about this?
Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads are better than one. Anybody have any experience or advice about this?
Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads are better than one. Anybody have any experience or advice about this?
Just got diagnosed recently (age 36). I've been talking to two great clinics - both want to set appointments with me. I'd like to see both at least at first, but I don't know if that'll cause problems. I'm having some nonclassical things happening on top of everything and I'm thinking two heads are better than one. Anybody have any experience or advice about this?
lightNlife
New member
No wonder you've been asking so many questions lately! It completely slipped my mind (though I know I read it somewhere) that you're a recent diagnosis. I've done the dual-clinic gig. As long as you don't have any insuarance hangups, checking them both out, at least at first, will be a good idea. As to the non-classical issues...well, I happen to think that ALL adult CFers have non-classical issues. As one of my respiratory therapists once put it "CF didn't read the book!"
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
lightNlife
New member
No wonder you've been asking so many questions lately! It completely slipped my mind (though I know I read it somewhere) that you're a recent diagnosis. I've done the dual-clinic gig. As long as you don't have any insuarance hangups, checking them both out, at least at first, will be a good idea. As to the non-classical issues...well, I happen to think that ALL adult CFers have non-classical issues. As one of my respiratory therapists once put it "CF didn't read the book!"
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
lightNlife
New member
No wonder you've been asking so many questions lately! It completely slipped my mind (though I know I read it somewhere) that you're a recent diagnosis. I've done the dual-clinic gig. As long as you don't have any insuarance hangups, checking them both out, at least at first, will be a good idea. As to the non-classical issues...well, I happen to think that ALL adult CFers have non-classical issues. As one of my respiratory therapists once put it "CF didn't read the book!"
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
lightNlife
New member
No wonder you've been asking so many questions lately! It completely slipped my mind (though I know I read it somewhere) that you're a recent diagnosis. I've done the dual-clinic gig. As long as you don't have any insuarance hangups, checking them both out, at least at first, will be a good idea. As to the non-classical issues...well, I happen to think that ALL adult CFers have non-classical issues. As one of my respiratory therapists once put it "CF didn't read the book!"
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
lightNlife
New member
No wonder you've been asking so many questions lately! It completely slipped my mind (though I know I read it somewhere) that you're a recent diagnosis. I've done the dual-clinic gig. As long as you don't have any insuarance hangups, checking them both out, at least at first, will be a good idea. As to the non-classical issues...well, I happen to think that ALL adult CFers have non-classical issues. As one of my respiratory therapists once put it "CF didn't read the book!"
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
Make sure you're going to a clinic that is accredited with the CF Foundation, and that they have a big enough staff to suit your needs. I was really fortunate at one point in my life to be at a clinic that had a nurse coordinator, GI doc, asthma specialist, endocrinologist, dietitian, and resp. therapist. These days I only have the CF specialist, the nurse coordinator and an respiratory therapist. It's a little more effort to get all my needs met, especially since there's only 1 CF doc at my clinic who sees over 100 patients.
I don't know what your insurance situation is like...that may make you a bit limited, but you'll figure it out <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best of luck, and I hope you're able to get your questions answered. Remember, we're here for you if you feel overwhelmed with this dramatic new (in name at least) aspect of your life.
-Lauren (Lgrace from the other message board)
My "non classical" CF issues are the follwing. aAbout 2 years ago the following got worse out of nowhere over about 4 months:
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
My "non classical" CF issues are the follwing. aAbout 2 years ago the following got worse out of nowhere over about 4 months:
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
My "non classical" CF issues are the follwing. aAbout 2 years ago the following got worse out of nowhere over about 4 months:
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
My "non classical" CF issues are the follwing. aAbout 2 years ago the following got worse out of nowhere over about 4 months:
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
My "non classical" CF issues are the follwing. aAbout 2 years ago the following got worse out of nowhere over about 4 months:
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
- Getting more and more dehydrated, despite huge water intake. Intense raw, dry, gummy feeling in the back of the throat and metallic taste.
- An intense head pain.. not headaches.. a constant head pain or inflammation feeling that is unaffected by medication. Feels like something is eating my brain.
- Intense eye pain.. inside and out and several other eye issues that came out of nowhere (floaters, photophobia), but I can tell are related to the head pain.
- Constant major fatigue and multiple random sudden fatigue attacks per day.
These have been constant for 2 years now and are very slowly getting worse. It is taking all of my will power to function and keep it together. Drinking loads of salted water seems to make a small dent in it. I've had every test under the sun (including spinal tap) and everything comes out normal. My lung issues, while present, are in the background..some irritation, some feeling short of breath, some pinches..
I am sure they checked for this because it is the obvious thing to check for but your symptoms sound soooo much like cf related diabetes. I remember when I was first dx'd with diabetes I was drinking gallons of anything. I also got throbbing headaches ffom high blood sugars and blurred vision with floaters from high blood sugar. So strange you have all those diabetic symptoms. Glad you are on track to taking care<img src="i/expressions/face-icon-small-smile.gif" border="0"> Trying both clinics sounds like a good idea. I would start keeping track of all your medical records. Anytime they do a test or have bloodwork done just ask for a copy. That way you are informed and you can take your records anywhere. An informed and prepared patient is much better off.
I am sure they checked for this because it is the obvious thing to check for but your symptoms sound soooo much like cf related diabetes. I remember when I was first dx'd with diabetes I was drinking gallons of anything. I also got throbbing headaches ffom high blood sugars and blurred vision with floaters from high blood sugar. So strange you have all those diabetic symptoms. Glad you are on track to taking care<img src="i/expressions/face-icon-small-smile.gif" border="0"> Trying both clinics sounds like a good idea. I would start keeping track of all your medical records. Anytime they do a test or have bloodwork done just ask for a copy. That way you are informed and you can take your records anywhere. An informed and prepared patient is much better off.
I am sure they checked for this because it is the obvious thing to check for but your symptoms sound soooo much like cf related diabetes. I remember when I was first dx'd with diabetes I was drinking gallons of anything. I also got throbbing headaches ffom high blood sugars and blurred vision with floaters from high blood sugar. So strange you have all those diabetic symptoms. Glad you are on track to taking care<img src="i/expressions/face-icon-small-smile.gif" border="0"> Trying both clinics sounds like a good idea. I would start keeping track of all your medical records. Anytime they do a test or have bloodwork done just ask for a copy. That way you are informed and you can take your records anywhere. An informed and prepared patient is much better off.
I am sure they checked for this because it is the obvious thing to check for but your symptoms sound soooo much like cf related diabetes. I remember when I was first dx'd with diabetes I was drinking gallons of anything. I also got throbbing headaches ffom high blood sugars and blurred vision with floaters from high blood sugar. So strange you have all those diabetic symptoms. Glad you are on track to taking care<img src="i/expressions/face-icon-small-smile.gif" border="0"> Trying both clinics sounds like a good idea. I would start keeping track of all your medical records. Anytime they do a test or have bloodwork done just ask for a copy. That way you are informed and you can take your records anywhere. An informed and prepared patient is much better off.
I am sure they checked for this because it is the obvious thing to check for but your symptoms sound soooo much like cf related diabetes. I remember when I was first dx'd with diabetes I was drinking gallons of anything. I also got throbbing headaches ffom high blood sugars and blurred vision with floaters from high blood sugar. So strange you have all those diabetic symptoms. Glad you are on track to taking care<img src="i/expressions/face-icon-small-smile.gif" border="0"> Trying both clinics sounds like a good idea. I would start keeping track of all your medical records. Anytime they do a test or have bloodwork done just ask for a copy. That way you are informed and you can take your records anywhere. An informed and prepared patient is much better off.