Washington DC area: Adult CF Center

C

CFinCalifornia

Guest
Hi everyone,

I'm moving to Washington DC next week and am looking for a good adult CF doctor. I was wondering who DC adults go to, and if you're satisfied with your care.

A little bit about me and my case: 25 years old, female, double delta 508. I'll be living by myself and working full time. Until I was 22, my CF was very easy to manage. Since then, I've had infusions 3 times, but have found that TOBI tends to be a strong maintenance drug for me, so I haven't been on IVs in about a year and a half.

In general, I don't care much about the size of the clinic, so long as there is a doctor and/or nurse who is accessible outside of appointments if I have questions, and flexible and creative in his/her approach to treatment. I like to have an open dialogue with my care team.

I'm looking forward to hearing about people's experiences and suggestions. I won't have a car, so I do value proximity, but I'm willing to rent a car to travel up to an hour for a great doctor a few times a year.

Thanks,
Megan
 
C

CFinCalifornia

Guest
Hi everyone,

I'm moving to Washington DC next week and am looking for a good adult CF doctor. I was wondering who DC adults go to, and if you're satisfied with your care.

A little bit about me and my case: 25 years old, female, double delta 508. I'll be living by myself and working full time. Until I was 22, my CF was very easy to manage. Since then, I've had infusions 3 times, but have found that TOBI tends to be a strong maintenance drug for me, so I haven't been on IVs in about a year and a half.

In general, I don't care much about the size of the clinic, so long as there is a doctor and/or nurse who is accessible outside of appointments if I have questions, and flexible and creative in his/her approach to treatment. I like to have an open dialogue with my care team.

I'm looking forward to hearing about people's experiences and suggestions. I won't have a car, so I do value proximity, but I'm willing to rent a car to travel up to an hour for a great doctor a few times a year.

Thanks,
Megan
 
C

CFinCalifornia

Guest
Hi everyone,
<br />
<br />I'm moving to Washington DC next week and am looking for a good adult CF doctor. I was wondering who DC adults go to, and if you're satisfied with your care.
<br />
<br />A little bit about me and my case: 25 years old, female, double delta 508. I'll be living by myself and working full time. Until I was 22, my CF was very easy to manage. Since then, I've had infusions 3 times, but have found that TOBI tends to be a strong maintenance drug for me, so I haven't been on IVs in about a year and a half.
<br />
<br />In general, I don't care much about the size of the clinic, so long as there is a doctor and/or nurse who is accessible outside of appointments if I have questions, and flexible and creative in his/her approach to treatment. I like to have an open dialogue with my care team.
<br />
<br />I'm looking forward to hearing about people's experiences and suggestions. I won't have a car, so I do value proximity, but I'm willing to rent a car to travel up to an hour for a great doctor a few times a year.
<br />
<br />Thanks,
<br />Megan
 
R

rpcvchina

New member
As far as I know, you have the choices of National Children's medical center in DC (I think you can get there by metro bus) and Johns Hopkins in Baltimore, which you'd need a car to get to. JH is much larger and they do lung transplants. However, it is a "teaching hospital" so you very often have to go through layers of residents before you get a doctor, unless it is a regular appointment. I don't know about Northern VA, there may be another option for you there. At cff.org there are a list of care centers.
 
R

rpcvchina

New member
As far as I know, you have the choices of National Children's medical center in DC (I think you can get there by metro bus) and Johns Hopkins in Baltimore, which you'd need a car to get to. JH is much larger and they do lung transplants. However, it is a "teaching hospital" so you very often have to go through layers of residents before you get a doctor, unless it is a regular appointment. I don't know about Northern VA, there may be another option for you there. At cff.org there are a list of care centers.
 
R

rpcvchina

New member
As far as I know, you have the choices of National Children's medical center in DC (I think you can get there by metro bus) and Johns Hopkins in Baltimore, which you'd need a car to get to. JH is much larger and they do lung transplants. However, it is a "teaching hospital" so you very often have to go through layers of residents before you get a doctor, unless it is a regular appointment. I don't know about Northern VA, there may be another option for you there. At cff.org there are a list of care centers.
 
F

folione

New member
Washington Hospital Center is where the adults are transitioned after Children's National Medical Center in DC. (But I don't have any doctor info; my CFer is still a kid)
 
F

folione

New member
Washington Hospital Center is where the adults are transitioned after Children's National Medical Center in DC. (But I don't have any doctor info; my CFer is still a kid)
 
F

folione

New member
Washington Hospital Center is where the adults are transitioned after Children's National Medical Center in DC. (But I don't have any doctor info; my CFer is still a kid)
 
J

Jana

New member
Fairfax Hospital (in Northern VA) has a clinic for children. They generally keep them well into their 20's but probably wouldn't take someone who is already "grown up." A friend of mine finally was told she had to leave that program and was sent to another doctor who is, I think, in Fairfax. That was in October. She was quite upset at the time but told me the other day that she really likes the new doctor and is doing well. It's not a cf clinic, though. I'm not sure of his name but can find out if you are interested.

I have wonderful doctors but am with Kaiser so get my care through their specialists in pulmonary and ID.

Best of luck with your move and finding a great doctor!
 
J

Jana

New member
Fairfax Hospital (in Northern VA) has a clinic for children. They generally keep them well into their 20's but probably wouldn't take someone who is already "grown up." A friend of mine finally was told she had to leave that program and was sent to another doctor who is, I think, in Fairfax. That was in October. She was quite upset at the time but told me the other day that she really likes the new doctor and is doing well. It's not a cf clinic, though. I'm not sure of his name but can find out if you are interested.

I have wonderful doctors but am with Kaiser so get my care through their specialists in pulmonary and ID.

Best of luck with your move and finding a great doctor!
 
J

Jana

New member
Fairfax Hospital (in Northern VA) has a clinic for children. They generally keep them well into their 20's but probably wouldn't take someone who is already "grown up." A friend of mine finally was told she had to leave that program and was sent to another doctor who is, I think, in Fairfax. That was in October. She was quite upset at the time but told me the other day that she really likes the new doctor and is doing well. It's not a cf clinic, though. I'm not sure of his name but can find out if you are interested.
<br />
<br />I have wonderful doctors but am with Kaiser so get my care through their specialists in pulmonary and ID.
<br />
<br />Best of luck with your move and finding a great doctor!
 
B

Brad

New member
Not knowing what part of the Washington area you will be traveling from
I would say. JH or Uva at Charlottesville or Richmond Va has a good Cf Clinic also.

I tried to get into the program at Fairfax 3 years ago and was told
they have a cut off age of 35, they are and Adult Center ?

Medical College of Virginia - CF Program Richmond VA Greg Elliott, M.D. (804) 828-2980

University of Virginia Health System - ADULT PROGRAM Charlottesville VA Mark K. Robbins, M.D.

(434) 924-9687
 
B

Brad

New member
Not knowing what part of the Washington area you will be traveling from
I would say. JH or Uva at Charlottesville or Richmond Va has a good Cf Clinic also.

I tried to get into the program at Fairfax 3 years ago and was told
they have a cut off age of 35, they are and Adult Center ?

Medical College of Virginia - CF Program Richmond VA Greg Elliott, M.D. (804) 828-2980

University of Virginia Health System - ADULT PROGRAM Charlottesville VA Mark K. Robbins, M.D.

(434) 924-9687
 
B

Brad

New member
Not knowing what part of the Washington area you will be traveling from
<br /> I would say. JH or Uva at Charlottesville or Richmond Va has a good Cf Clinic also.
<br />
<br /> I tried to get into the program at Fairfax 3 years ago and was told
<br /> they have a cut off age of 35, they are and Adult Center ?
<br />
<br /> Medical College of Virginia - CF Program Richmond VA Greg Elliott, M.D. (804) 828-2980
<br />
<br /> University of Virginia Health System - ADULT PROGRAM Charlottesville VA Mark K. Robbins, M.D.
<br />
<br /> (434) 924-9687
 
C

CFinCalifornia

Guest
Thanks for the responses so far. Brad and others, I'll be living in Dupont Circle -- so NW Washington.

Is Fairfax closer or easier to get to than Richmond and Charlottesville?
 
C

CFinCalifornia

Guest
Thanks for the responses so far. Brad and others, I'll be living in Dupont Circle -- so NW Washington.

Is Fairfax closer or easier to get to than Richmond and Charlottesville?
 
C

CFinCalifornia

Guest
Thanks for the responses so far. Brad and others, I'll be living in Dupont Circle -- so NW Washington.
<br />
<br />Is Fairfax closer or easier to get to than Richmond and Charlottesville?
 
J

Jana

New member
Richmond would be a couple of hours from there, and I think Charlottesville is about the same--not sure on that one, but Brad probably knows.

Fairfax would be within about 30 minutes and should be an easy trip unless you decide to do it during rush hour =)
 
J

Jana

New member
Richmond would be a couple of hours from there, and I think Charlottesville is about the same--not sure on that one, but Brad probably knows.

Fairfax would be within about 30 minutes and should be an easy trip unless you decide to do it during rush hour =)
 
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