Possible Move to Raleigh/Durham

[Mitzi1]

Hi All!
I may be moving to the Raleigh / Durham area possibly this summer.
We are going up there in about 2 weeks to visit and scout it out.I'm 21 and I live in Northern MS near Memphis, TN. I'm not in the clinic here (SCARY!!!) but am seeing a great team of specialists around the area that work great together helping me manage my CFRD,Osteoporosis, Glaucoma,ABPA, and a host of other issues.I have lived in many big cities, but I have received my best care in Memphis (6 years now) outside of the clinic. I'm at 55% FEV and would like to be settled there for future transplant options. I am apprehensive about going back into a clinic and being a guinea pig or just a number.I don't want to beg for sputum cultures or blood work, since my insurance covers it all! I have had to see my various Dr.'s 7-10 times a month when things have been fluctuating, so I want to still have that kind of hands on management. I don't mind if they outsource it to some of their preferred specialists, but I don't want them to not let me search out for good coverage. Going once every 3 months won't cut it again.

I have heard great things about the Duke adult clinic and their success rates with aspergillous patients, but nothing real promising about UNC (yet)
If there is <u>anyone</u> who can give me comments, horror stories, Dr. suggestions on who to see first, or anything about your care there I would so appreciate it.

I'm really grasping for information and since I don't know anyone there I need help!

Marlene,21-CF
Northern MS

 

[Mitzi1]

Hi All!
I may be moving to the Raleigh / Durham area possibly this summer.
We are going up there in about 2 weeks to visit and scout it out.I'm 21 and I live in Northern MS near Memphis, TN. I'm not in the clinic here (SCARY!!!) but am seeing a great team of specialists around the area that work great together helping me manage my CFRD,Osteoporosis, Glaucoma,ABPA, and a host of other issues.I have lived in many big cities, but I have received my best care in Memphis (6 years now) outside of the clinic. I'm at 55% FEV and would like to be settled there for future transplant options. I am apprehensive about going back into a clinic and being a guinea pig or just a number.I don't want to beg for sputum cultures or blood work, since my insurance covers it all! I have had to see my various Dr.'s 7-10 times a month when things have been fluctuating, so I want to still have that kind of hands on management. I don't mind if they outsource it to some of their preferred specialists, but I don't want them to not let me search out for good coverage. Going once every 3 months won't cut it again.

I have heard great things about the Duke adult clinic and their success rates with aspergillous patients, but nothing real promising about UNC (yet)
If there is <u>anyone</u> who can give me comments, horror stories, Dr. suggestions on who to see first, or anything about your care there I would so appreciate it.

I'm really grasping for information and since I don't know anyone there I need help!

Marlene,21-CF
Northern MS

 

[Mitzi1]

Hi All!
I may be moving to the Raleigh / Durham area possibly this summer.
We are going up there in about 2 weeks to visit and scout it out.I'm 21 and I live in Northern MS near Memphis, TN. I'm not in the clinic here (SCARY!!!) but am seeing a great team of specialists around the area that work great together helping me manage my CFRD,Osteoporosis, Glaucoma,ABPA, and a host of other issues.I have lived in many big cities, but I have received my best care in Memphis (6 years now) outside of the clinic. I'm at 55% FEV and would like to be settled there for future transplant options. I am apprehensive about going back into a clinic and being a guinea pig or just a number.I don't want to beg for sputum cultures or blood work, since my insurance covers it all! I have had to see my various Dr.'s 7-10 times a month when things have been fluctuating, so I want to still have that kind of hands on management. I don't mind if they outsource it to some of their preferred specialists, but I don't want them to not let me search out for good coverage. Going once every 3 months won't cut it again.

I have heard great things about the Duke adult clinic and their success rates with aspergillous patients, but nothing real promising about UNC (yet)
If there is <u>anyone</u> who can give me comments, horror stories, Dr. suggestions on who to see first, or anything about your care there I would so appreciate it.

I'm really grasping for information and since I don't know anyone there I need help!

Marlene,21-CF
Northern MS

 

[Mitzi1]

Hi All!
I may be moving to the Raleigh / Durham area possibly this summer.
We are going up there in about 2 weeks to visit and scout it out.I'm 21 and I live in Northern MS near Memphis, TN. I'm not in the clinic here (SCARY!!!) but am seeing a great team of specialists around the area that work great together helping me manage my CFRD,Osteoporosis, Glaucoma,ABPA, and a host of other issues.I have lived in many big cities, but I have received my best care in Memphis (6 years now) outside of the clinic. I'm at 55% FEV and would like to be settled there for future transplant options. I am apprehensive about going back into a clinic and being a guinea pig or just a number.I don't want to beg for sputum cultures or blood work, since my insurance covers it all! I have had to see my various Dr.'s 7-10 times a month when things have been fluctuating, so I want to still have that kind of hands on management. I don't mind if they outsource it to some of their preferred specialists, but I don't want them to not let me search out for good coverage. Going once every 3 months won't cut it again.

I have heard great things about the Duke adult clinic and their success rates with aspergillous patients, but nothing real promising about UNC (yet)
If there is <u>anyone</u> who can give me comments, horror stories, Dr. suggestions on who to see first, or anything about your care there I would so appreciate it.

I'm really grasping for information and since I don't know anyone there I need help!

Marlene,21-CF
Northern MS

 

[Mitzi1]

Hi All!
<br />I may be moving to the Raleigh / Durham area possibly this summer.
<br />We are going up there in about 2 weeks to visit and scout it out.I'm 21 and I live in Northern MS near Memphis, TN. I'm not in the clinic here (SCARY!!!) but am seeing a great team of specialists around the area that work great together helping me manage my CFRD,Osteoporosis, Glaucoma,ABPA, and a host of other issues.I have lived in many big cities, but I have received my best care in Memphis (6 years now) outside of the clinic. I'm at 55% FEV and would like to be settled there for future transplant options. I am apprehensive about going back into a clinic and being a guinea pig or just a number.I don't want to beg for sputum cultures or blood work, since my insurance covers it all! I have had to see my various Dr.'s 7-10 times a month when things have been fluctuating, so I want to still have that kind of hands on management. I don't mind if they outsource it to some of their preferred specialists, but I don't want them to not let me search out for good coverage. Going once every 3 months won't cut it again.
<br />
<br />I have heard great things about the Duke adult clinic and their success rates with aspergillous patients, but nothing real promising about UNC (yet)
<br />If there is <u>anyone</u> who can give me comments, horror stories, Dr. suggestions on who to see first, or anything about your care there I would so appreciate it.
<br />
<br />I'm really grasping for information and since I don't know anyone there I need help!
<br />
<br />Marlene,21-CF
<br />Northern MS

 

[jfarel]

I've heard good things about Duke and UNC.

 

[jfarel]

I've heard good things about Duke and UNC.

 

[jfarel]

I've heard good things about Duke and UNC.

 

[jfarel]

I've heard good things about Duke and UNC.

 

[jfarel]

I've heard good things about Duke and UNC.

 

[blondelawyer]

UNC has an awesome clinic! My husband went there for about 4 years, and we have considered moving back to the area just because of the clinic. The adult nurse coordinator Kathy Hoeneker is the best. The doctors are all really good and the clinic is very involved in research. We never felt like we had to beg for tests there or that we were just a number. The doctors were very involved in my husband's care and it felt like they really cared about him. We felt very comfortable there and would recommend it in a heart beat.

 

[blondelawyer]

UNC has an awesome clinic! My husband went there for about 4 years, and we have considered moving back to the area just because of the clinic. The adult nurse coordinator Kathy Hoeneker is the best. The doctors are all really good and the clinic is very involved in research. We never felt like we had to beg for tests there or that we were just a number. The doctors were very involved in my husband's care and it felt like they really cared about him. We felt very comfortable there and would recommend it in a heart beat.

 

[blondelawyer]

UNC has an awesome clinic! My husband went there for about 4 years, and we have considered moving back to the area just because of the clinic. The adult nurse coordinator Kathy Hoeneker is the best. The doctors are all really good and the clinic is very involved in research. We never felt like we had to beg for tests there or that we were just a number. The doctors were very involved in my husband's care and it felt like they really cared about him. We felt very comfortable there and would recommend it in a heart beat.

 

[blondelawyer]

UNC has an awesome clinic! My husband went there for about 4 years, and we have considered moving back to the area just because of the clinic. The adult nurse coordinator Kathy Hoeneker is the best. The doctors are all really good and the clinic is very involved in research. We never felt like we had to beg for tests there or that we were just a number. The doctors were very involved in my husband's care and it felt like they really cared about him. We felt very comfortable there and would recommend it in a heart beat.

 

[blondelawyer]

UNC has an awesome clinic! My husband went there for about 4 years, and we have considered moving back to the area just because of the clinic. The adult nurse coordinator Kathy Hoeneker is the best. The doctors are all really good and the clinic is very involved in research. We never felt like we had to beg for tests there or that we were just a number. The doctors were very involved in my husband's care and it felt like they really cared about him. We felt very comfortable there and would recommend it in a heart beat.

 

[etabetac]

I also moved out of that area, having not gone to a clinic or taken really good care of myself (I was actually on the Arkansas side about 1.5 hours south of you). I am a graduate student at UNC and have received great care at UNC's CF Clinic. I am relatively healthy so I don't need a ton of resources but they have always taken their time and been very thorough with me. I saw the fellow for a long time and haven't had a consistent doctor lately. Because I can be seen for free at campus health they have been willing to work with campus health as needed to save me money (which may be important if you are a student).

One plus with both Duke and UNC is that they are doing a lot of cutting edge research because it's a Research Hospital. I have participated in a few paid studies with them and through CEMLAB.

Everyone is very friendly. My visits usually consist of checking in (weight, med list, oxygen sats, pain level, etc), pfts, sometimes x-ray at this point or before visit, sputum sample. This part is pretty quick and well-timed but I also tend not to be there on clinic days because of class. I tend to end up waiting around for long periods of time in the actual exam room. But once the doctor comes in I usually spend quality time with them there. I would probably switch if there was a pulmonologist I felt comfortable with only because of the wait and length of visit time. I've had several visits take at least 3 -4 hours (and these were routine ones, no special testing).

I have always had my doctor's cell phone number and beeper number and they have always invited me to call anytime if I have problems. They are also in the same office as my allergy clinic and communicate well between the two of them (since that's where my biggest problems currently are). The building -- Ambulatory Care Center -- has all of the facilities I've needed in the same building (this has not been true with other places I've been too) like x-rays, blood testing. I have not had to be hospitalized for anything directly related to cf but I have been hospitalized at UNC and I have no complaints about the hospital either. I have several doctor friends who work for the hospital system and are very satisfied with their experiences which help on the patient end.

I really have no comparison with Duke. Both hospitals have transplant centers for CF patients if this is a concern. The one thing I will say is that your first visit with UNC will take a long time so you might want to make sure you have a day off or plenty of time to meet with them.

 

[etabetac]

I also moved out of that area, having not gone to a clinic or taken really good care of myself (I was actually on the Arkansas side about 1.5 hours south of you). I am a graduate student at UNC and have received great care at UNC's CF Clinic. I am relatively healthy so I don't need a ton of resources but they have always taken their time and been very thorough with me. I saw the fellow for a long time and haven't had a consistent doctor lately. Because I can be seen for free at campus health they have been willing to work with campus health as needed to save me money (which may be important if you are a student).

One plus with both Duke and UNC is that they are doing a lot of cutting edge research because it's a Research Hospital. I have participated in a few paid studies with them and through CEMLAB.

Everyone is very friendly. My visits usually consist of checking in (weight, med list, oxygen sats, pain level, etc), pfts, sometimes x-ray at this point or before visit, sputum sample. This part is pretty quick and well-timed but I also tend not to be there on clinic days because of class. I tend to end up waiting around for long periods of time in the actual exam room. But once the doctor comes in I usually spend quality time with them there. I would probably switch if there was a pulmonologist I felt comfortable with only because of the wait and length of visit time. I've had several visits take at least 3 -4 hours (and these were routine ones, no special testing).

I have always had my doctor's cell phone number and beeper number and they have always invited me to call anytime if I have problems. They are also in the same office as my allergy clinic and communicate well between the two of them (since that's where my biggest problems currently are). The building -- Ambulatory Care Center -- has all of the facilities I've needed in the same building (this has not been true with other places I've been too) like x-rays, blood testing. I have not had to be hospitalized for anything directly related to cf but I have been hospitalized at UNC and I have no complaints about the hospital either. I have several doctor friends who work for the hospital system and are very satisfied with their experiences which help on the patient end.

I really have no comparison with Duke. Both hospitals have transplant centers for CF patients if this is a concern. The one thing I will say is that your first visit with UNC will take a long time so you might want to make sure you have a day off or plenty of time to meet with them.

 

[etabetac]

I also moved out of that area, having not gone to a clinic or taken really good care of myself (I was actually on the Arkansas side about 1.5 hours south of you). I am a graduate student at UNC and have received great care at UNC's CF Clinic. I am relatively healthy so I don't need a ton of resources but they have always taken their time and been very thorough with me. I saw the fellow for a long time and haven't had a consistent doctor lately. Because I can be seen for free at campus health they have been willing to work with campus health as needed to save me money (which may be important if you are a student).

One plus with both Duke and UNC is that they are doing a lot of cutting edge research because it's a Research Hospital. I have participated in a few paid studies with them and through CEMLAB.

Everyone is very friendly. My visits usually consist of checking in (weight, med list, oxygen sats, pain level, etc), pfts, sometimes x-ray at this point or before visit, sputum sample. This part is pretty quick and well-timed but I also tend not to be there on clinic days because of class. I tend to end up waiting around for long periods of time in the actual exam room. But once the doctor comes in I usually spend quality time with them there. I would probably switch if there was a pulmonologist I felt comfortable with only because of the wait and length of visit time. I've had several visits take at least 3 -4 hours (and these were routine ones, no special testing).

I have always had my doctor's cell phone number and beeper number and they have always invited me to call anytime if I have problems. They are also in the same office as my allergy clinic and communicate well between the two of them (since that's where my biggest problems currently are). The building -- Ambulatory Care Center -- has all of the facilities I've needed in the same building (this has not been true with other places I've been too) like x-rays, blood testing. I have not had to be hospitalized for anything directly related to cf but I have been hospitalized at UNC and I have no complaints about the hospital either. I have several doctor friends who work for the hospital system and are very satisfied with their experiences which help on the patient end.

I really have no comparison with Duke. Both hospitals have transplant centers for CF patients if this is a concern. The one thing I will say is that your first visit with UNC will take a long time so you might want to make sure you have a day off or plenty of time to meet with them.

 

[etabetac]

I also moved out of that area, having not gone to a clinic or taken really good care of myself (I was actually on the Arkansas side about 1.5 hours south of you). I am a graduate student at UNC and have received great care at UNC's CF Clinic. I am relatively healthy so I don't need a ton of resources but they have always taken their time and been very thorough with me. I saw the fellow for a long time and haven't had a consistent doctor lately. Because I can be seen for free at campus health they have been willing to work with campus health as needed to save me money (which may be important if you are a student).

One plus with both Duke and UNC is that they are doing a lot of cutting edge research because it's a Research Hospital. I have participated in a few paid studies with them and through CEMLAB.

Everyone is very friendly. My visits usually consist of checking in (weight, med list, oxygen sats, pain level, etc), pfts, sometimes x-ray at this point or before visit, sputum sample. This part is pretty quick and well-timed but I also tend not to be there on clinic days because of class. I tend to end up waiting around for long periods of time in the actual exam room. But once the doctor comes in I usually spend quality time with them there. I would probably switch if there was a pulmonologist I felt comfortable with only because of the wait and length of visit time. I've had several visits take at least 3 -4 hours (and these were routine ones, no special testing).

I have always had my doctor's cell phone number and beeper number and they have always invited me to call anytime if I have problems. They are also in the same office as my allergy clinic and communicate well between the two of them (since that's where my biggest problems currently are). The building -- Ambulatory Care Center -- has all of the facilities I've needed in the same building (this has not been true with other places I've been too) like x-rays, blood testing. I have not had to be hospitalized for anything directly related to cf but I have been hospitalized at UNC and I have no complaints about the hospital either. I have several doctor friends who work for the hospital system and are very satisfied with their experiences which help on the patient end.

I really have no comparison with Duke. Both hospitals have transplant centers for CF patients if this is a concern. The one thing I will say is that your first visit with UNC will take a long time so you might want to make sure you have a day off or plenty of time to meet with them.

 

[etabetac]

I also moved out of that area, having not gone to a clinic or taken really good care of myself (I was actually on the Arkansas side about 1.5 hours south of you). I am a graduate student at UNC and have received great care at UNC's CF Clinic. I am relatively healthy so I don't need a ton of resources but they have always taken their time and been very thorough with me. I saw the fellow for a long time and haven't had a consistent doctor lately. Because I can be seen for free at campus health they have been willing to work with campus health as needed to save me money (which may be important if you are a student).
<br />
<br />One plus with both Duke and UNC is that they are doing a lot of cutting edge research because it's a Research Hospital. I have participated in a few paid studies with them and through CEMLAB.
<br />
<br />Everyone is very friendly. My visits usually consist of checking in (weight, med list, oxygen sats, pain level, etc), pfts, sometimes x-ray at this point or before visit, sputum sample. This part is pretty quick and well-timed but I also tend not to be there on clinic days because of class. I tend to end up waiting around for long periods of time in the actual exam room. But once the doctor comes in I usually spend quality time with them there. I would probably switch if there was a pulmonologist I felt comfortable with only because of the wait and length of visit time. I've had several visits take at least 3 -4 hours (and these were routine ones, no special testing).
<br />
<br />I have always had my doctor's cell phone number and beeper number and they have always invited me to call anytime if I have problems. They are also in the same office as my allergy clinic and communicate well between the two of them (since that's where my biggest problems currently are). The building -- Ambulatory Care Center -- has all of the facilities I've needed in the same building (this has not been true with other places I've been too) like x-rays, blood testing. I have not had to be hospitalized for anything directly related to cf but I have been hospitalized at UNC and I have no complaints about the hospital either. I have several doctor friends who work for the hospital system and are very satisfied with their experiences which help on the patient end.
<br />
<br />I really have no comparison with Duke. Both hospitals have transplant centers for CF patients if this is a concern. The one thing I will say is that your first visit with UNC will take a long time so you might want to make sure you have a day off or plenty of time to meet with them.