Going to UNC next week

J

JennifersHope

New member
I am both excited and nervous and sort of like who gives a crap all at once but I am going to UNC next Thursday for a consult on my DF508/Q1330E mutations or mutation or whatever it means.

I am so hoping for answers. The team seems really nice there. I love my team at MUSC, just Dr Flume doesn't exactly know what to do with me and if my gene is in fact a CF disease causing gene or not. I am doing great since stopping working, minus sinus infections and getting sick if I work. I am going to go with it isn't.!!

Anyway after my appointment at UNC I am finally going to get to talk to me team in Charleston to discuss a game plan from here.

Anyone go to UNC?
 
J

JennifersHope

New member
I am both excited and nervous and sort of like who gives a crap all at once but I am going to UNC next Thursday for a consult on my DF508/Q1330E mutations or mutation or whatever it means.

I am so hoping for answers. The team seems really nice there. I love my team at MUSC, just Dr Flume doesn't exactly know what to do with me and if my gene is in fact a CF disease causing gene or not. I am doing great since stopping working, minus sinus infections and getting sick if I work. I am going to go with it isn't.!!

Anyway after my appointment at UNC I am finally going to get to talk to me team in Charleston to discuss a game plan from here.

Anyone go to UNC?
 
J

JennifersHope

New member
I am both excited and nervous and sort of like who gives a crap all at once but I am going to UNC next Thursday for a consult on my DF508/Q1330E mutations or mutation or whatever it means.
<br />
<br />I am so hoping for answers. The team seems really nice there. I love my team at MUSC, just Dr Flume doesn't exactly know what to do with me and if my gene is in fact a CF disease causing gene or not. I am doing great since stopping working, minus sinus infections and getting sick if I work. I am going to go with it isn't.!!
<br />
<br />Anyway after my appointment at UNC I am finally going to get to talk to me team in Charleston to discuss a game plan from here.
<br />
<br />Anyone go to UNC?
 
J

JennifersHope

New member
They didn' tell me who I would be seeing, so far I have talked to Kathy Honeker(Sp) and Dr Boucher, Dr Boucher I guess is the head of research there. He has been the one sending me emails back and fourth but he is going to be out of the country when I come. He said they will discuss my case as a team and probably run some novelty testing.

I am staying in their version of the Ronald Mcdonald house on Wed and my appointment is Thursday morning, I am deathly afraid I am going to get lost and never find the place, it looks so huge.
 
J

JennifersHope

New member
They didn' tell me who I would be seeing, so far I have talked to Kathy Honeker(Sp) and Dr Boucher, Dr Boucher I guess is the head of research there. He has been the one sending me emails back and fourth but he is going to be out of the country when I come. He said they will discuss my case as a team and probably run some novelty testing.

I am staying in their version of the Ronald Mcdonald house on Wed and my appointment is Thursday morning, I am deathly afraid I am going to get lost and never find the place, it looks so huge.
 
J

JennifersHope

New member
They didn' tell me who I would be seeing, so far I have talked to Kathy Honeker(Sp) and Dr Boucher, Dr Boucher I guess is the head of research there. He has been the one sending me emails back and fourth but he is going to be out of the country when I come. He said they will discuss my case as a team and probably run some novelty testing.
<br />
<br />I am staying in their version of the Ronald Mcdonald house on Wed and my appointment is Thursday morning, I am deathly afraid I am going to get lost and never find the place, it looks so huge.
 
J

JennifersHope

New member
I am not looking to leave my CF center I go to, I love the team there, it is just that it has been several months and we have not moved forward with doing anything. So I decided to get a second op, to see if they can help shed some light into the situation.

I am sure that my doctor is right in Charleston so I don't know why I am going, but I think it is important so that someone else with this same odd gene doesn't have to go through what I am going through...
 
J

JennifersHope

New member
I am not looking to leave my CF center I go to, I love the team there, it is just that it has been several months and we have not moved forward with doing anything. So I decided to get a second op, to see if they can help shed some light into the situation.

I am sure that my doctor is right in Charleston so I don't know why I am going, but I think it is important so that someone else with this same odd gene doesn't have to go through what I am going through...
 
J

JennifersHope

New member
I am not looking to leave my CF center I go to, I love the team there, it is just that it has been several months and we have not moved forward with doing anything. So I decided to get a second op, to see if they can help shed some light into the situation.
<br />
<br />I am sure that my doctor is right in Charleston so I don't know why I am going, but I think it is important so that someone else with this same odd gene doesn't have to go through what I am going through...
 
J

jaimers

Super Moderator
I go to UNC and am from chapel hill although i live in greensboro now (about 1 hour away). pm me if you want and i can give you my cell number in case you get lost and want some help. kathy is AMAZING. and Dr. Boucher is great. sometime's his "bedside manner" is a little gruff and he can kind of come off as grouchy but I've known him for years (my mom worked in cf research with him after i was diagnosed at 3 months old) and he's absolutely who you want to be on your case. the man's mind is phenomenal. I'm excited for you and hope you get some answers!
 
J

jaimers

Super Moderator
I go to UNC and am from chapel hill although i live in greensboro now (about 1 hour away). pm me if you want and i can give you my cell number in case you get lost and want some help. kathy is AMAZING. and Dr. Boucher is great. sometime's his "bedside manner" is a little gruff and he can kind of come off as grouchy but I've known him for years (my mom worked in cf research with him after i was diagnosed at 3 months old) and he's absolutely who you want to be on your case. the man's mind is phenomenal. I'm excited for you and hope you get some answers!
 
J

jaimers

Super Moderator
I go to UNC and am from chapel hill although i live in greensboro now (about 1 hour away). pm me if you want and i can give you my cell number in case you get lost and want some help. kathy is AMAZING. and Dr. Boucher is great. sometime's his "bedside manner" is a little gruff and he can kind of come off as grouchy but I've known him for years (my mom worked in cf research with him after i was diagnosed at 3 months old) and he's absolutely who you want to be on your case. the man's mind is phenomenal. I'm excited for you and hope you get some answers!
 
J

jaimers

Super Moderator
ok so i just re-read you're post. i'm going to be there thursday as well. cool! are you going to the adult clinic in the ACC or are you meeting them somewhere else?
 
J

jaimers

Super Moderator
ok so i just re-read you're post. i'm going to be there thursday as well. cool! are you going to the adult clinic in the ACC or are you meeting them somewhere else?
 
J

jaimers

Super Moderator
ok so i just re-read you're post. i'm going to be there thursday as well. cool! are you going to the adult clinic in the ACC or are you meeting them somewhere else?
 
S

semperfiohana

Guest
i won't be there until dec 2nd. and wll probably have a picc placed. i see dr.donaldson now. i'm not sure i've met dr. boucher. if you are going to the acc, which i would assume you would be. it's not connected to the actual hospital. just as an fyi for ya.
 
S

semperfiohana

Guest
i won't be there until dec 2nd. and wll probably have a picc placed. i see dr.donaldson now. i'm not sure i've met dr. boucher. if you are going to the acc, which i would assume you would be. it's not connected to the actual hospital. just as an fyi for ya.
 
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