<b>1. Which center were you seen/are seen at and what did you think of the overall care and infection control policies of the CF center in your city?</b>
I go to the Adult CF Clinic at Johns Hopkins in Baltimore. They're the ones who finally diagnosed my CF at age 43! I've never been left waiting for more than a few minutes before I've been whisked back into another room. When scheduling me there have been occasions that they've called to make my appt earlier or later if there's another patient coming in with B.Cepacia (which I don't have). There are hand sanitizers hanging all over the place and the docs and nurses all uses them (as do the patients).
<b>2. Did they allow you to do home health for clean outs or were you required to stay inpatient?</b>
I've only had one round of IVs and they let me do them at home. They are very accommodating to my work and travel schedule.
<b>3. How was the air quality in the city you lived in?</b>
I live on the Chesapeake Bay near Annapolis. No issues there. I work in Crystal City VA which sometimes in the summer has 'red' days, but since I'm in an office it's not an issue.
<b>4. How did the weather affect your CF in the city you lived in?</b>
Biggest issue here is allergies. But I'm going through the multiyear densitization treatments (weekly allergy shots) and it's doing really well.
<b>5. How close did you live to the city with the CF center?</b>
About 20 minutes to drive there, another 15 to find a parking spot in the garage. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<b>6. Was it a large center, i.e. over 150+ patients, or relatively small?</b>
The CF center is large, and I think the adult center has over 300 patients. They have a dedicated adult CF team who are very active in research. I've been really impressed and I'm not the wall flower type. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<b>7. Did they listen to you and include you in decision-making and treat you with respect?</b>
Oh yes. I'm very much an interactive part of my health care. They are always responsive to questions on their CF hotline, via e-mail or phone and in person. I've never felt that I've been blown off or that they're just doing the 'standard' treatment regimen for me. Everything has been tailored specifically for me and my CF.
<b>8. Did your center offer clinical trials?</b>
Yes, but I've not had the opportunity to be involved in one yet. I was only recently diagnosed.
<b>9. Did your center have a lung transplant center?</b>
I think so - they are part of Johns Hopkins Hospital which is HUGE. I've seen a few episodes of a TV show called Hopkins which is filmed at JH.
<b>10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?</b>
Yes. They do clinic appts Tues & Thurs. I haven't had to be seen in between, but I remember them telling me that they are accessible (not sure of the protocol there). They're very good about returning phone calls and calling in meds over the phone if needed.
<b>11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)</b>
Nope. I already have 1 daughter (and I didn't know I had CF back then). Just guessing here, but knowing the 3 adult CF docs I think they'd take an individual look at my situation and have a very frank discussion about it with me, giving me their opinions and perspectives.
I go to the Adult CF Clinic at Johns Hopkins in Baltimore. They're the ones who finally diagnosed my CF at age 43! I've never been left waiting for more than a few minutes before I've been whisked back into another room. When scheduling me there have been occasions that they've called to make my appt earlier or later if there's another patient coming in with B.Cepacia (which I don't have). There are hand sanitizers hanging all over the place and the docs and nurses all uses them (as do the patients).
<b>2. Did they allow you to do home health for clean outs or were you required to stay inpatient?</b>
I've only had one round of IVs and they let me do them at home. They are very accommodating to my work and travel schedule.
<b>3. How was the air quality in the city you lived in?</b>
I live on the Chesapeake Bay near Annapolis. No issues there. I work in Crystal City VA which sometimes in the summer has 'red' days, but since I'm in an office it's not an issue.
<b>4. How did the weather affect your CF in the city you lived in?</b>
Biggest issue here is allergies. But I'm going through the multiyear densitization treatments (weekly allergy shots) and it's doing really well.
<b>5. How close did you live to the city with the CF center?</b>
About 20 minutes to drive there, another 15 to find a parking spot in the garage. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<b>6. Was it a large center, i.e. over 150+ patients, or relatively small?</b>
The CF center is large, and I think the adult center has over 300 patients. They have a dedicated adult CF team who are very active in research. I've been really impressed and I'm not the wall flower type. <img src="i/expressions/face-icon-small-wink.gif" border="0">
<b>7. Did they listen to you and include you in decision-making and treat you with respect?</b>
Oh yes. I'm very much an interactive part of my health care. They are always responsive to questions on their CF hotline, via e-mail or phone and in person. I've never felt that I've been blown off or that they're just doing the 'standard' treatment regimen for me. Everything has been tailored specifically for me and my CF.
<b>8. Did your center offer clinical trials?</b>
Yes, but I've not had the opportunity to be involved in one yet. I was only recently diagnosed.
<b>9. Did your center have a lung transplant center?</b>
I think so - they are part of Johns Hopkins Hospital which is HUGE. I've seen a few episodes of a TV show called Hopkins which is filmed at JH.
<b>10. Were you able to reach someone right away if you were sick and be seen within a reasonable amount of time?</b>
Yes. They do clinic appts Tues & Thurs. I haven't had to be seen in between, but I remember them telling me that they are accessible (not sure of the protocol there). They're very good about returning phone calls and calling in meds over the phone if needed.
<b>11. If applicable, have you talked to your center regarding pregnancy, and if so, how did they react to CFer's desires to be a mommy? (women only)</b>
Nope. I already have 1 daughter (and I didn't know I had CF back then). Just guessing here, but knowing the 3 adult CF docs I think they'd take an individual look at my situation and have a very frank discussion about it with me, giving me their opinions and perspectives.