Possible Move to Raleigh/Durham

[jaimers]

i was diagnosed at duke at 3 months old but then my doc there retired and so i started going to UNC when i was about 4 and i've been seen there ever since. can't say enough good things about adult and peds clinics! LOVE LOVE LOVE THEM. and as several others have said Kathy Hohnecker is amazing. i've called her and left a voice mail at 2 am and had a call back by 8 am the same "day". they are very prompt about getting back to you.
in the adults clinic they like for patients to be very hands on and involved in the decision making processes regarding your care. i'm on IVs right now and when i was trying to decide whether to do them or stick to an oral abx the docs wouldn't tell me what to do, they just helped me weigh the pros/cons but wouldn't decide for me and said its your call, you know your body what do you feel like you need? which for me personally, i really like.
UNC is a major research hospital and there are always studies going on that you can participate in. thats how i've gotten on a lot of the meds i'm on now by participating in studies over the years.
i have phone/cell/fax/office numbers and email for my doctor and his email and as jenny said kathy is so great about any questions about anything. i call her all the time regarding insurance stuff or if i can't get in touch with my doc, need prescriptions refilled, etc. and she always takes care of it. I've personally seen Dr. Scott Donaldson and Dr. Coakley (can't remember his first name b/c i've only seen him once when donaldson was out of town) and really like them both.
i've only been admitted at UNC once since they kicked me out of the peds clinic at 20 for being too old <img src="i/expressions/face-icon-small-wink.gif" border="0"> and it was (other than the fact that i felt like crap and had to be in the hospital) a good stay in terms of nurses, PTs, seeing the doc etc.

i HIGHLY recommend you go to UNC for your care. feel free to pm me if you wnat more info or have specific questions about the area-i live in chapel hill and have lived there most of my life after the fam relocated from raleigh so i've been in the area a long time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaimers]

i was diagnosed at duke at 3 months old but then my doc there retired and so i started going to UNC when i was about 4 and i've been seen there ever since. can't say enough good things about adult and peds clinics! LOVE LOVE LOVE THEM. and as several others have said Kathy Hohnecker is amazing. i've called her and left a voice mail at 2 am and had a call back by 8 am the same "day". they are very prompt about getting back to you.
in the adults clinic they like for patients to be very hands on and involved in the decision making processes regarding your care. i'm on IVs right now and when i was trying to decide whether to do them or stick to an oral abx the docs wouldn't tell me what to do, they just helped me weigh the pros/cons but wouldn't decide for me and said its your call, you know your body what do you feel like you need? which for me personally, i really like.
UNC is a major research hospital and there are always studies going on that you can participate in. thats how i've gotten on a lot of the meds i'm on now by participating in studies over the years.
i have phone/cell/fax/office numbers and email for my doctor and his email and as jenny said kathy is so great about any questions about anything. i call her all the time regarding insurance stuff or if i can't get in touch with my doc, need prescriptions refilled, etc. and she always takes care of it. I've personally seen Dr. Scott Donaldson and Dr. Coakley (can't remember his first name b/c i've only seen him once when donaldson was out of town) and really like them both.
i've only been admitted at UNC once since they kicked me out of the peds clinic at 20 for being too old <img src="i/expressions/face-icon-small-wink.gif" border="0"> and it was (other than the fact that i felt like crap and had to be in the hospital) a good stay in terms of nurses, PTs, seeing the doc etc.

i HIGHLY recommend you go to UNC for your care. feel free to pm me if you wnat more info or have specific questions about the area-i live in chapel hill and have lived there most of my life after the fam relocated from raleigh so i've been in the area a long time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaimers]

i was diagnosed at duke at 3 months old but then my doc there retired and so i started going to UNC when i was about 4 and i've been seen there ever since. can't say enough good things about adult and peds clinics! LOVE LOVE LOVE THEM. and as several others have said Kathy Hohnecker is amazing. i've called her and left a voice mail at 2 am and had a call back by 8 am the same "day". they are very prompt about getting back to you.
in the adults clinic they like for patients to be very hands on and involved in the decision making processes regarding your care. i'm on IVs right now and when i was trying to decide whether to do them or stick to an oral abx the docs wouldn't tell me what to do, they just helped me weigh the pros/cons but wouldn't decide for me and said its your call, you know your body what do you feel like you need? which for me personally, i really like.
UNC is a major research hospital and there are always studies going on that you can participate in. thats how i've gotten on a lot of the meds i'm on now by participating in studies over the years.
i have phone/cell/fax/office numbers and email for my doctor and his email and as jenny said kathy is so great about any questions about anything. i call her all the time regarding insurance stuff or if i can't get in touch with my doc, need prescriptions refilled, etc. and she always takes care of it. I've personally seen Dr. Scott Donaldson and Dr. Coakley (can't remember his first name b/c i've only seen him once when donaldson was out of town) and really like them both.
i've only been admitted at UNC once since they kicked me out of the peds clinic at 20 for being too old <img src="i/expressions/face-icon-small-wink.gif" border="0"> and it was (other than the fact that i felt like crap and had to be in the hospital) a good stay in terms of nurses, PTs, seeing the doc etc.

i HIGHLY recommend you go to UNC for your care. feel free to pm me if you wnat more info or have specific questions about the area-i live in chapel hill and have lived there most of my life after the fam relocated from raleigh so i've been in the area a long time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaimers]

i was diagnosed at duke at 3 months old but then my doc there retired and so i started going to UNC when i was about 4 and i've been seen there ever since. can't say enough good things about adult and peds clinics! LOVE LOVE LOVE THEM. and as several others have said Kathy Hohnecker is amazing. i've called her and left a voice mail at 2 am and had a call back by 8 am the same "day". they are very prompt about getting back to you.
in the adults clinic they like for patients to be very hands on and involved in the decision making processes regarding your care. i'm on IVs right now and when i was trying to decide whether to do them or stick to an oral abx the docs wouldn't tell me what to do, they just helped me weigh the pros/cons but wouldn't decide for me and said its your call, you know your body what do you feel like you need? which for me personally, i really like.
UNC is a major research hospital and there are always studies going on that you can participate in. thats how i've gotten on a lot of the meds i'm on now by participating in studies over the years.
i have phone/cell/fax/office numbers and email for my doctor and his email and as jenny said kathy is so great about any questions about anything. i call her all the time regarding insurance stuff or if i can't get in touch with my doc, need prescriptions refilled, etc. and she always takes care of it. I've personally seen Dr. Scott Donaldson and Dr. Coakley (can't remember his first name b/c i've only seen him once when donaldson was out of town) and really like them both.
i've only been admitted at UNC once since they kicked me out of the peds clinic at 20 for being too old <img src="i/expressions/face-icon-small-wink.gif" border="0"> and it was (other than the fact that i felt like crap and had to be in the hospital) a good stay in terms of nurses, PTs, seeing the doc etc.

i HIGHLY recommend you go to UNC for your care. feel free to pm me if you wnat more info or have specific questions about the area-i live in chapel hill and have lived there most of my life after the fam relocated from raleigh so i've been in the area a long time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaimers]

i was diagnosed at duke at 3 months old but then my doc there retired and so i started going to UNC when i was about 4 and i've been seen there ever since. can't say enough good things about adult and peds clinics! LOVE LOVE LOVE THEM. and as several others have said Kathy Hohnecker is amazing. i've called her and left a voice mail at 2 am and had a call back by 8 am the same "day". they are very prompt about getting back to you.
<br />in the adults clinic they like for patients to be very hands on and involved in the decision making processes regarding your care. i'm on IVs right now and when i was trying to decide whether to do them or stick to an oral abx the docs wouldn't tell me what to do, they just helped me weigh the pros/cons but wouldn't decide for me and said its your call, you know your body what do you feel like you need? which for me personally, i really like.
<br />UNC is a major research hospital and there are always studies going on that you can participate in. thats how i've gotten on a lot of the meds i'm on now by participating in studies over the years.
<br />i have phone/cell/fax/office numbers and email for my doctor and his email and as jenny said kathy is so great about any questions about anything. i call her all the time regarding insurance stuff or if i can't get in touch with my doc, need prescriptions refilled, etc. and she always takes care of it. I've personally seen Dr. Scott Donaldson and Dr. Coakley (can't remember his first name b/c i've only seen him once when donaldson was out of town) and really like them both.
<br />i've only been admitted at UNC once since they kicked me out of the peds clinic at 20 for being too old <img src="i/expressions/face-icon-small-wink.gif" border="0"> and it was (other than the fact that i felt like crap and had to be in the hospital) a good stay in terms of nurses, PTs, seeing the doc etc.
<br />
<br />i HIGHLY recommend you go to UNC for your care. feel free to pm me if you wnat more info or have specific questions about the area-i live in chapel hill and have lived there most of my life after the fam relocated from raleigh so i've been in the area a long time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[nshaffer2]

Hi Jaimers,
I was wondering if you could recommend a pediatric pulmonologist and GI at UNC? We're moving to Holly Springs next week and we're trying to decide between the Duke and UNC clinics, at this point we're leaning more towards UNC, but I'm having a hard time getting in touch with someone to answer all my questions! My daughter is 3 years old with CF and we've had great experience at the clinic down here in Atlanta. I'm just trying to find some referrals for great doctors and trying to find out who the right person is to talk to, like a nurse coordinator or someone like that to answer my questions!
Any help would be greatly appreciated!
Nicole

 

[nshaffer2]

Hi Jaimers,
I was wondering if you could recommend a pediatric pulmonologist and GI at UNC? We're moving to Holly Springs next week and we're trying to decide between the Duke and UNC clinics, at this point we're leaning more towards UNC, but I'm having a hard time getting in touch with someone to answer all my questions! My daughter is 3 years old with CF and we've had great experience at the clinic down here in Atlanta. I'm just trying to find some referrals for great doctors and trying to find out who the right person is to talk to, like a nurse coordinator or someone like that to answer my questions!
Any help would be greatly appreciated!
Nicole

 

[nshaffer2]

Hi Jaimers,
I was wondering if you could recommend a pediatric pulmonologist and GI at UNC? We're moving to Holly Springs next week and we're trying to decide between the Duke and UNC clinics, at this point we're leaning more towards UNC, but I'm having a hard time getting in touch with someone to answer all my questions! My daughter is 3 years old with CF and we've had great experience at the clinic down here in Atlanta. I'm just trying to find some referrals for great doctors and trying to find out who the right person is to talk to, like a nurse coordinator or someone like that to answer my questions!
Any help would be greatly appreciated!
Nicole

 

[nshaffer2]

Hi Jaimers,
I was wondering if you could recommend a pediatric pulmonologist and GI at UNC? We're moving to Holly Springs next week and we're trying to decide between the Duke and UNC clinics, at this point we're leaning more towards UNC, but I'm having a hard time getting in touch with someone to answer all my questions! My daughter is 3 years old with CF and we've had great experience at the clinic down here in Atlanta. I'm just trying to find some referrals for great doctors and trying to find out who the right person is to talk to, like a nurse coordinator or someone like that to answer my questions!
Any help would be greatly appreciated!
Nicole

 

[nshaffer2]

Hi Jaimers,
<br />I was wondering if you could recommend a pediatric pulmonologist and GI at UNC? We're moving to Holly Springs next week and we're trying to decide between the Duke and UNC clinics, at this point we're leaning more towards UNC, but I'm having a hard time getting in touch with someone to answer all my questions! My daughter is 3 years old with CF and we've had great experience at the clinic down here in Atlanta. I'm just trying to find some referrals for great doctors and trying to find out who the right person is to talk to, like a nurse coordinator or someone like that to answer my questions!
<br />Any help would be greatly appreciated!
<br />Nicole

 

[MOME2RT]

Dr. Terry Noah is the leader of the pack, so I would recommend him. But Like someone else said there are 7 others that would do just fine! We saw Dr. Esther & 2 lady doctors.(cant remeber there names)(one was german I think, she did Reeces bronch) They really listen to your concerns & ideas....in just the 4 weeks that we dealt with them, I fell in love with all of them<img src="i/expressions/face-icon-small-wink.gif" border="0">
But the thorastic surgeron took the cake.....he played video games with Reece, sat on his bed, hung out with us. He felt like one of us! We absoulty LOVED him! (Dr. Haithcock) & his team were out of this world!

 

[MOME2RT]

Dr. Terry Noah is the leader of the pack, so I would recommend him. But Like someone else said there are 7 others that would do just fine! We saw Dr. Esther & 2 lady doctors.(cant remeber there names)(one was german I think, she did Reeces bronch) They really listen to your concerns & ideas....in just the 4 weeks that we dealt with them, I fell in love with all of them<img src="i/expressions/face-icon-small-wink.gif" border="0">
But the thorastic surgeron took the cake.....he played video games with Reece, sat on his bed, hung out with us. He felt like one of us! We absoulty LOVED him! (Dr. Haithcock) & his team were out of this world!

 

[MOME2RT]

Dr. Terry Noah is the leader of the pack, so I would recommend him. But Like someone else said there are 7 others that would do just fine! We saw Dr. Esther & 2 lady doctors.(cant remeber there names)(one was german I think, she did Reeces bronch) They really listen to your concerns & ideas....in just the 4 weeks that we dealt with them, I fell in love with all of them<img src="i/expressions/face-icon-small-wink.gif" border="0">
But the thorastic surgeron took the cake.....he played video games with Reece, sat on his bed, hung out with us. He felt like one of us! We absoulty LOVED him! (Dr. Haithcock) & his team were out of this world!

 

[MOME2RT]

Dr. Terry Noah is the leader of the pack, so I would recommend him. But Like someone else said there are 7 others that would do just fine! We saw Dr. Esther & 2 lady doctors.(cant remeber there names)(one was german I think, she did Reeces bronch) They really listen to your concerns & ideas....in just the 4 weeks that we dealt with them, I fell in love with all of them<img src="i/expressions/face-icon-small-wink.gif" border="0">
But the thorastic surgeron took the cake.....he played video games with Reece, sat on his bed, hung out with us. He felt like one of us! We absoulty LOVED him! (Dr. Haithcock) & his team were out of this world!

 

[MOME2RT]

Dr. Terry Noah is the leader of the pack, so I would recommend him. But Like someone else said there are 7 others that would do just fine! We saw Dr. Esther & 2 lady doctors.(cant remeber there names)(one was german I think, she did Reeces bronch) They really listen to your concerns & ideas....in just the 4 weeks that we dealt with them, I fell in love with all of them<img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />But the thorastic surgeron took the cake.....he played video games with Reece, sat on his bed, hung out with us. He felt like one of us! We absoulty LOVED him! (Dr. Haithcock) & his team were out of this world!

 

[AllansGirl]

Since everyone is giving mad props to UNC, I am not going to try to dispute them. I am admittedly biased anyway.

My fiance had CF, and passed away two and a half years ago, so the only experience I have with CF centers was through him, and the only basis of comparison I have was his hospital in NY, Schneider Children's in Long Island.

It seemed to me that he got better care there, but I was only with him during one hospitalization in NY, and all of the staff had known him his entire life so that probably has colored my perceptions to some degree.

His primary care doctor, most of the nurses, the transplant team, and the social workers were all very caring and tried their best to be helpful at UNC. Unfortunately, we ran into some major funding roadblocks when trying to pay for his transplant, and they were unable to offer much in the way of advice or assistance. But, there was probably little that they actually could have done.

Some of the doctors on the floor and nurses on any given night could be blithering idiots, but I suspect you get that anywhere. The CF and transplant doctors, nurses, respiratory therapists, and everyone who had more experience with CF were for the most part very good.

UNC and Schneider's had very different philosophies about how and when someone should go on antibiotics (or, at least Allan's respective doctors at those clinics did). UNC's philosophy was to encourage exercise, chest clearance, good nutrition, and everything possible to keep you off antibiotics for as long as possible. They wanted to reserve IVs for when they were absolutely necessary, so that they would be most effective, and as a result they were a bit hesitant to put him on them or to keep him on them for long periods.

Schneider's on the other hand, was far more keen on placing him on IVs whenever he started to feel a bit ill and keeping him on them for long stretches, with their philosophy being that it is better to start them as soon as they might be necessary to prevent lung damage now, instead of being as concerned with the drug's effectiveness in the future.

I don't know which philosophy you hold but that is UNC's stance (at least it was 2.5 years ago). I don't know anything about Duke.

He had a doctor's appointment once a week most weeks in NY (he was on IVs almost constantly there) whereas at UNC he only saw a doctor once a month.

His primary care doctor here, though, Dr. Defeo, was wonderful, funny, and compassionate. He was fairly new when Allan had him (and so was supervised by more senior docs) but surely has more experience now. On the night Allan was put on a ventilator, about a week before he died, Dr. Defeo came as soon as he heard and stayed with me for hours. I had no family there, none of Allan's family members were yet there, and no friends in Chapel Hill. The chaplain kind of freaked me out, but Dr. Defeo kept me updated and kept me sane and kept me company for several hours. I honestly don't know how I would have made it through that horrible night without him.

The most horrific stories I have regard NC's Medicaid. Since there have been cuts to Medicaid in the past couple of years, I'll bet that it has only gotten worse. I know you said you had insurance, but if anyone out there doesn't...

When we first moved down here, Medicaid refused to pay for oxygen. They wanted records stating that his oxygen had dropped down to something like 86%...and his hospital records only showed him de-satting to about 89 or 88%.... His doc in NY had to, ahem, "find" some "old records" that showed him de-satting further in order to get Medicaid to pay for it.

They reluctantly did, and provided an oxygen compressor, portable liquid oxygen, and a tank of compressed oxygen as a back-up in case the electricity went out. A couple of months later, they took away the compressed and liquid oxygen tanks with no explanation.

Medicaid also initially paid for pulmonary rehab, which was a requirement since he was trying to get on the transplant list. However, when Medicaid decided to reject his application for a transplant (saying that he was too sick, with b. cepacia, low weight, and osteoporosis) they also decided to stop paying for his pulmonary rehab--despite the fact that it was helping him, (and it should be in their best interest to keep him as healthy and out of the hospital as much as possible) because he "wasn't declining fast enough." <img src="i/expressions/face-icon-small-frown.gif" border="0">

So anyway, my biggest gripes are with NC's Medicaid, obviously. Just a warning that anyone who moves here planning to get on Medicaid will face an uphill battle.

[/rant off]

All right, so I realize that's a lot of mostly useless information. But, I do know a bit about what it is like to live here and I can find my way around the Triangle pretty well. I now go to school in Chapel Hill, and live about an hour south in Fuquay-Varina. If anyone moving here needs any assistance or advice about relocating to the area, please let me know.

 

[AllansGirl]

Since everyone is giving mad props to UNC, I am not going to try to dispute them. I am admittedly biased anyway.

My fiance had CF, and passed away two and a half years ago, so the only experience I have with CF centers was through him, and the only basis of comparison I have was his hospital in NY, Schneider Children's in Long Island.

It seemed to me that he got better care there, but I was only with him during one hospitalization in NY, and all of the staff had known him his entire life so that probably has colored my perceptions to some degree.

His primary care doctor, most of the nurses, the transplant team, and the social workers were all very caring and tried their best to be helpful at UNC. Unfortunately, we ran into some major funding roadblocks when trying to pay for his transplant, and they were unable to offer much in the way of advice or assistance. But, there was probably little that they actually could have done.

Some of the doctors on the floor and nurses on any given night could be blithering idiots, but I suspect you get that anywhere. The CF and transplant doctors, nurses, respiratory therapists, and everyone who had more experience with CF were for the most part very good.

UNC and Schneider's had very different philosophies about how and when someone should go on antibiotics (or, at least Allan's respective doctors at those clinics did). UNC's philosophy was to encourage exercise, chest clearance, good nutrition, and everything possible to keep you off antibiotics for as long as possible. They wanted to reserve IVs for when they were absolutely necessary, so that they would be most effective, and as a result they were a bit hesitant to put him on them or to keep him on them for long periods.

Schneider's on the other hand, was far more keen on placing him on IVs whenever he started to feel a bit ill and keeping him on them for long stretches, with their philosophy being that it is better to start them as soon as they might be necessary to prevent lung damage now, instead of being as concerned with the drug's effectiveness in the future.

I don't know which philosophy you hold but that is UNC's stance (at least it was 2.5 years ago). I don't know anything about Duke.

He had a doctor's appointment once a week most weeks in NY (he was on IVs almost constantly there) whereas at UNC he only saw a doctor once a month.

His primary care doctor here, though, Dr. Defeo, was wonderful, funny, and compassionate. He was fairly new when Allan had him (and so was supervised by more senior docs) but surely has more experience now. On the night Allan was put on a ventilator, about a week before he died, Dr. Defeo came as soon as he heard and stayed with me for hours. I had no family there, none of Allan's family members were yet there, and no friends in Chapel Hill. The chaplain kind of freaked me out, but Dr. Defeo kept me updated and kept me sane and kept me company for several hours. I honestly don't know how I would have made it through that horrible night without him.

The most horrific stories I have regard NC's Medicaid. Since there have been cuts to Medicaid in the past couple of years, I'll bet that it has only gotten worse. I know you said you had insurance, but if anyone out there doesn't...

When we first moved down here, Medicaid refused to pay for oxygen. They wanted records stating that his oxygen had dropped down to something like 86%...and his hospital records only showed him de-satting to about 89 or 88%.... His doc in NY had to, ahem, "find" some "old records" that showed him de-satting further in order to get Medicaid to pay for it.

They reluctantly did, and provided an oxygen compressor, portable liquid oxygen, and a tank of compressed oxygen as a back-up in case the electricity went out. A couple of months later, they took away the compressed and liquid oxygen tanks with no explanation.

Medicaid also initially paid for pulmonary rehab, which was a requirement since he was trying to get on the transplant list. However, when Medicaid decided to reject his application for a transplant (saying that he was too sick, with b. cepacia, low weight, and osteoporosis) they also decided to stop paying for his pulmonary rehab--despite the fact that it was helping him, (and it should be in their best interest to keep him as healthy and out of the hospital as much as possible) because he "wasn't declining fast enough." <img src="i/expressions/face-icon-small-frown.gif" border="0">

So anyway, my biggest gripes are with NC's Medicaid, obviously. Just a warning that anyone who moves here planning to get on Medicaid will face an uphill battle.

[/rant off]

All right, so I realize that's a lot of mostly useless information. But, I do know a bit about what it is like to live here and I can find my way around the Triangle pretty well. I now go to school in Chapel Hill, and live about an hour south in Fuquay-Varina. If anyone moving here needs any assistance or advice about relocating to the area, please let me know.

 

[AllansGirl]

Since everyone is giving mad props to UNC, I am not going to try to dispute them. I am admittedly biased anyway.

My fiance had CF, and passed away two and a half years ago, so the only experience I have with CF centers was through him, and the only basis of comparison I have was his hospital in NY, Schneider Children's in Long Island.

It seemed to me that he got better care there, but I was only with him during one hospitalization in NY, and all of the staff had known him his entire life so that probably has colored my perceptions to some degree.

His primary care doctor, most of the nurses, the transplant team, and the social workers were all very caring and tried their best to be helpful at UNC. Unfortunately, we ran into some major funding roadblocks when trying to pay for his transplant, and they were unable to offer much in the way of advice or assistance. But, there was probably little that they actually could have done.

Some of the doctors on the floor and nurses on any given night could be blithering idiots, but I suspect you get that anywhere. The CF and transplant doctors, nurses, respiratory therapists, and everyone who had more experience with CF were for the most part very good.

UNC and Schneider's had very different philosophies about how and when someone should go on antibiotics (or, at least Allan's respective doctors at those clinics did). UNC's philosophy was to encourage exercise, chest clearance, good nutrition, and everything possible to keep you off antibiotics for as long as possible. They wanted to reserve IVs for when they were absolutely necessary, so that they would be most effective, and as a result they were a bit hesitant to put him on them or to keep him on them for long periods.

Schneider's on the other hand, was far more keen on placing him on IVs whenever he started to feel a bit ill and keeping him on them for long stretches, with their philosophy being that it is better to start them as soon as they might be necessary to prevent lung damage now, instead of being as concerned with the drug's effectiveness in the future.

I don't know which philosophy you hold but that is UNC's stance (at least it was 2.5 years ago). I don't know anything about Duke.

He had a doctor's appointment once a week most weeks in NY (he was on IVs almost constantly there) whereas at UNC he only saw a doctor once a month.

His primary care doctor here, though, Dr. Defeo, was wonderful, funny, and compassionate. He was fairly new when Allan had him (and so was supervised by more senior docs) but surely has more experience now. On the night Allan was put on a ventilator, about a week before he died, Dr. Defeo came as soon as he heard and stayed with me for hours. I had no family there, none of Allan's family members were yet there, and no friends in Chapel Hill. The chaplain kind of freaked me out, but Dr. Defeo kept me updated and kept me sane and kept me company for several hours. I honestly don't know how I would have made it through that horrible night without him.

The most horrific stories I have regard NC's Medicaid. Since there have been cuts to Medicaid in the past couple of years, I'll bet that it has only gotten worse. I know you said you had insurance, but if anyone out there doesn't...

When we first moved down here, Medicaid refused to pay for oxygen. They wanted records stating that his oxygen had dropped down to something like 86%...and his hospital records only showed him de-satting to about 89 or 88%.... His doc in NY had to, ahem, "find" some "old records" that showed him de-satting further in order to get Medicaid to pay for it.

They reluctantly did, and provided an oxygen compressor, portable liquid oxygen, and a tank of compressed oxygen as a back-up in case the electricity went out. A couple of months later, they took away the compressed and liquid oxygen tanks with no explanation.

Medicaid also initially paid for pulmonary rehab, which was a requirement since he was trying to get on the transplant list. However, when Medicaid decided to reject his application for a transplant (saying that he was too sick, with b. cepacia, low weight, and osteoporosis) they also decided to stop paying for his pulmonary rehab--despite the fact that it was helping him, (and it should be in their best interest to keep him as healthy and out of the hospital as much as possible) because he "wasn't declining fast enough." <img src="i/expressions/face-icon-small-frown.gif" border="0">

So anyway, my biggest gripes are with NC's Medicaid, obviously. Just a warning that anyone who moves here planning to get on Medicaid will face an uphill battle.

[/rant off]

All right, so I realize that's a lot of mostly useless information. But, I do know a bit about what it is like to live here and I can find my way around the Triangle pretty well. I now go to school in Chapel Hill, and live about an hour south in Fuquay-Varina. If anyone moving here needs any assistance or advice about relocating to the area, please let me know.

 

[AllansGirl]

Since everyone is giving mad props to UNC, I am not going to try to dispute them. I am admittedly biased anyway.

My fiance had CF, and passed away two and a half years ago, so the only experience I have with CF centers was through him, and the only basis of comparison I have was his hospital in NY, Schneider Children's in Long Island.

It seemed to me that he got better care there, but I was only with him during one hospitalization in NY, and all of the staff had known him his entire life so that probably has colored my perceptions to some degree.

His primary care doctor, most of the nurses, the transplant team, and the social workers were all very caring and tried their best to be helpful at UNC. Unfortunately, we ran into some major funding roadblocks when trying to pay for his transplant, and they were unable to offer much in the way of advice or assistance. But, there was probably little that they actually could have done.

Some of the doctors on the floor and nurses on any given night could be blithering idiots, but I suspect you get that anywhere. The CF and transplant doctors, nurses, respiratory therapists, and everyone who had more experience with CF were for the most part very good.

UNC and Schneider's had very different philosophies about how and when someone should go on antibiotics (or, at least Allan's respective doctors at those clinics did). UNC's philosophy was to encourage exercise, chest clearance, good nutrition, and everything possible to keep you off antibiotics for as long as possible. They wanted to reserve IVs for when they were absolutely necessary, so that they would be most effective, and as a result they were a bit hesitant to put him on them or to keep him on them for long periods.

Schneider's on the other hand, was far more keen on placing him on IVs whenever he started to feel a bit ill and keeping him on them for long stretches, with their philosophy being that it is better to start them as soon as they might be necessary to prevent lung damage now, instead of being as concerned with the drug's effectiveness in the future.

I don't know which philosophy you hold but that is UNC's stance (at least it was 2.5 years ago). I don't know anything about Duke.

He had a doctor's appointment once a week most weeks in NY (he was on IVs almost constantly there) whereas at UNC he only saw a doctor once a month.

His primary care doctor here, though, Dr. Defeo, was wonderful, funny, and compassionate. He was fairly new when Allan had him (and so was supervised by more senior docs) but surely has more experience now. On the night Allan was put on a ventilator, about a week before he died, Dr. Defeo came as soon as he heard and stayed with me for hours. I had no family there, none of Allan's family members were yet there, and no friends in Chapel Hill. The chaplain kind of freaked me out, but Dr. Defeo kept me updated and kept me sane and kept me company for several hours. I honestly don't know how I would have made it through that horrible night without him.

The most horrific stories I have regard NC's Medicaid. Since there have been cuts to Medicaid in the past couple of years, I'll bet that it has only gotten worse. I know you said you had insurance, but if anyone out there doesn't...

When we first moved down here, Medicaid refused to pay for oxygen. They wanted records stating that his oxygen had dropped down to something like 86%...and his hospital records only showed him de-satting to about 89 or 88%.... His doc in NY had to, ahem, "find" some "old records" that showed him de-satting further in order to get Medicaid to pay for it.

They reluctantly did, and provided an oxygen compressor, portable liquid oxygen, and a tank of compressed oxygen as a back-up in case the electricity went out. A couple of months later, they took away the compressed and liquid oxygen tanks with no explanation.

Medicaid also initially paid for pulmonary rehab, which was a requirement since he was trying to get on the transplant list. However, when Medicaid decided to reject his application for a transplant (saying that he was too sick, with b. cepacia, low weight, and osteoporosis) they also decided to stop paying for his pulmonary rehab--despite the fact that it was helping him, (and it should be in their best interest to keep him as healthy and out of the hospital as much as possible) because he "wasn't declining fast enough." <img src="i/expressions/face-icon-small-frown.gif" border="0">

So anyway, my biggest gripes are with NC's Medicaid, obviously. Just a warning that anyone who moves here planning to get on Medicaid will face an uphill battle.

[/rant off]

All right, so I realize that's a lot of mostly useless information. But, I do know a bit about what it is like to live here and I can find my way around the Triangle pretty well. I now go to school in Chapel Hill, and live about an hour south in Fuquay-Varina. If anyone moving here needs any assistance or advice about relocating to the area, please let me know.

 

[AllansGirl]

Since everyone is giving mad props to UNC, I am not going to try to dispute them. I am admittedly biased anyway.
<br />
<br />My fiance had CF, and passed away two and a half years ago, so the only experience I have with CF centers was through him, and the only basis of comparison I have was his hospital in NY, Schneider Children's in Long Island.
<br />
<br />It seemed to me that he got better care there, but I was only with him during one hospitalization in NY, and all of the staff had known him his entire life so that probably has colored my perceptions to some degree.
<br />
<br />His primary care doctor, most of the nurses, the transplant team, and the social workers were all very caring and tried their best to be helpful at UNC. Unfortunately, we ran into some major funding roadblocks when trying to pay for his transplant, and they were unable to offer much in the way of advice or assistance. But, there was probably little that they actually could have done.
<br />
<br />Some of the doctors on the floor and nurses on any given night could be blithering idiots, but I suspect you get that anywhere. The CF and transplant doctors, nurses, respiratory therapists, and everyone who had more experience with CF were for the most part very good.
<br />
<br />UNC and Schneider's had very different philosophies about how and when someone should go on antibiotics (or, at least Allan's respective doctors at those clinics did). UNC's philosophy was to encourage exercise, chest clearance, good nutrition, and everything possible to keep you off antibiotics for as long as possible. They wanted to reserve IVs for when they were absolutely necessary, so that they would be most effective, and as a result they were a bit hesitant to put him on them or to keep him on them for long periods.
<br />
<br />Schneider's on the other hand, was far more keen on placing him on IVs whenever he started to feel a bit ill and keeping him on them for long stretches, with their philosophy being that it is better to start them as soon as they might be necessary to prevent lung damage now, instead of being as concerned with the drug's effectiveness in the future.
<br />
<br />I don't know which philosophy you hold but that is UNC's stance (at least it was 2.5 years ago). I don't know anything about Duke.
<br />
<br />He had a doctor's appointment once a week most weeks in NY (he was on IVs almost constantly there) whereas at UNC he only saw a doctor once a month.
<br />
<br />His primary care doctor here, though, Dr. Defeo, was wonderful, funny, and compassionate. He was fairly new when Allan had him (and so was supervised by more senior docs) but surely has more experience now. On the night Allan was put on a ventilator, about a week before he died, Dr. Defeo came as soon as he heard and stayed with me for hours. I had no family there, none of Allan's family members were yet there, and no friends in Chapel Hill. The chaplain kind of freaked me out, but Dr. Defeo kept me updated and kept me sane and kept me company for several hours. I honestly don't know how I would have made it through that horrible night without him.
<br />
<br />The most horrific stories I have regard NC's Medicaid. Since there have been cuts to Medicaid in the past couple of years, I'll bet that it has only gotten worse. I know you said you had insurance, but if anyone out there doesn't...
<br />
<br />When we first moved down here, Medicaid refused to pay for oxygen. They wanted records stating that his oxygen had dropped down to something like 86%...and his hospital records only showed him de-satting to about 89 or 88%.... His doc in NY had to, ahem, "find" some "old records" that showed him de-satting further in order to get Medicaid to pay for it.
<br />
<br />They reluctantly did, and provided an oxygen compressor, portable liquid oxygen, and a tank of compressed oxygen as a back-up in case the electricity went out. A couple of months later, they took away the compressed and liquid oxygen tanks with no explanation.
<br />
<br />Medicaid also initially paid for pulmonary rehab, which was a requirement since he was trying to get on the transplant list. However, when Medicaid decided to reject his application for a transplant (saying that he was too sick, with b. cepacia, low weight, and osteoporosis) they also decided to stop paying for his pulmonary rehab--despite the fact that it was helping him, (and it should be in their best interest to keep him as healthy and out of the hospital as much as possible) because he "wasn't declining fast enough." <img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br />So anyway, my biggest gripes are with NC's Medicaid, obviously. Just a warning that anyone who moves here planning to get on Medicaid will face an uphill battle.
<br />
<br />[/rant off]
<br />
<br />All right, so I realize that's a lot of mostly useless information. But, I do know a bit about what it is like to live here and I can find my way around the Triangle pretty well. I now go to school in Chapel Hill, and live about an hour south in Fuquay-Varina. If anyone moving here needs any assistance or advice about relocating to the area, please let me know.
<br />