As someone who never traveled much, I can't really compare CF care in different parts of the world, but I am a native German and can tell you my experiences here in Hamburg. Although there's an adulct CF center in Hamburg, I still visit the pediatric clinic in Hamburg-Altona. I've known my doctor and many nurses my entire life and I am treated by experts, so transferring isn't a priority for me.
What does a typical doctor's visit look like?
If I see my CF doctor for checkups, I'll make an appointment a few weeks in advance. Once I show up at the reception area, I'll be shuffled in a separate waiting room to avoid contact with any other patients or CF people. After weighting, blood is drawn and basic lab work (CRP, O², IgE) is done on location. Full blood count and sputum samples for antibiograms are sent to a nearby lab. My doctor will come in, do a physical examination (abdomen, thorax, joints, fingers, ears, nose, throat) and we'll discuss my current status and future treatment. Once a month there's a meeting of all specialists involved in CF care (doctors, RTs, psychologists, dieticians etc.) discussing their patient's current status together.
What is the routine when you are sick?
If I feel sick or think I might be getting there, I'll call the clinic. They'll connect me with my doctor. If there's something more urgent, I just call his mobile number. If possible he gives me instructions/advice on how to proceed (prescriptions, treatments etc.) and then usually asks me to see him as soon as possible. No need for appointments or anything like that. Once I'm at the clinic I might have to wait a bit longer, but they'll make sure I can sit down or even lie down in a separate room. If the need arises, the CF clinic will arrange hospitalization or referral to another specialist. They closely cooperate with several hospitals and physicians in the area, so waiting times are rarely a problem. If there are any problems with getting (urgent) appointments, my doctors are more than willing to make some angry phone calls to reluctant colleagues
Are any meds especially hard to find?
Not really. As soon as you get a prescribtion, you just visit the nearest pharmacy. Some exotic medications might take a day to be available, but that's the exception. If it is really urgent, pharmacists usually find ways and means (nearby hospitals & clinics, other pharmacists) to get just about any medication on time. If you want to do home IV and need some antibiotic cocktail mixed up, you might need to find a pharmacy with adequate facilities. But they'll be more than happy to deliver your meds to your doorstep twice a day if neccessary. We're very reliable customers, after all...
Are you able to get all meds needed?
From a logistical point of view, you can get every medication that has been approved within 24 hours. See the above. Getting your insurance to pay for it can be a bit more tricky. My insurance likes to argue about things like high-caloric drinks, vitamin preparations and calcium, but rarely questions the more serious stuff (antibiotics, nebulizers etc.). So be prepared to spend quite some time explaining medical issues to an uninformed insurance clerk.
If you need any further information, the German CF Association is called
Mukoviszidose e.V. Their english website is a joke, but if you're able to read german, there's plenty of information:
www.muko.info
If you're looking for CF centers in your area, just try this link:
http://muko.info/forschung/public-reporting.html
Best of luck here in Germany!
