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    • #18485
      Jenny Livingston
      Keymaster

      How frequently do you see your CF team (either virtually or in person) and what is your relationship with them like? Are you able to comfortably partner with them in your care decisions? Do you feel there is mutual trust there? I’d love to hear about your CF care team experiences – good, difficult, and everything in between.

    • #18488
      William
      Participant

      My doctor is great. I’ve been a patient of hers for about 25 years now. I’m comfortable talking about any and everything with her. Outside of her there’s been a rotating cast of people that have worked for her. Some I have found to be more trustworthy and helpful than others, which happens. Ultimately, I consult with my doctor on any major final decisions.

      • #18492
        Jenny Livingston
        Keymaster

        William, I love to read responses like yours. I feel fortunate to have a similar relationship with both my doctors.

    • #18502
      Paul met Debbie
      Participant

      Pretty good actually. I know my cf-nurse since 2002, she is the constant and golden factor in my team. My current pulmonologist is my doctor since a few years, and we communicate very well. He is my third pulmonologist in this hospital, the two before that got promoted away. And before that I had three different pulmonologists in my life in three different cf centers due to me moving around in the Netherlands for jobs and study.

      And the hospital pharmacist is a great help as well. There are more members of the team, but I seldom see or talk to them, except for the dietician who takes care of my supplemental dietetic food drinks.

      I can contact my team any time via phone or email. Mostly through my cf-nurse, sometimes directly. We speak a couple of times a year and once a year we see each other in the hospital (except when too much covid). Also my family doctor and her team (and pharmacist) are very helpful as well.

      The only difficulties that can arise is when other medical specialists are needed that are not directly related to the cf-team, because there still is a lot of separation in hospitals between the different specialties. For instance currently I need a urologist who is not a member of the cf-team. And then the communication is more difficult, because the doctors don’t dare to interfere in each others little worlds. So the urologist puts me on a waiting list, only looking at my kidney-situation which is (for now) stable, but I fear he is not sufficiently taking into account my extra vulnerability because of cf. And then we are at the mercy of the personalities of those involved to cooperate. Which of course is a necessity, for with cf, no medical problem stands on itself and they are almost always related some way or another to cf. In situations like this I wish my pulmonologist (who knows most about cf and my dossier) could officially take the lead and direct and coordinate the other specialists, but alas it doesn’t work that way, they are all their own boss and it takes a lot of diplomacy sometimes to make them work together without bruising ego’s.

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