I frequently post about Judith’s clinic visits, or calling clinic to discuss a problem or to get answers that I have for questions that pop up in between scheduled appointments. Having a specialized care team that knows the ins and outs of CF is crucial to getting the best care possible for a CF patient. We’re very lucky to live halfway between 2 great CF clinics and have a choice about where Judith gets her care based on her needs at the time.
There are many players in the CF care team: pulmonologists; gastroenterologists; ear, nose, throat specialists; dieticians; respiratory therapists; nurses; and social workers to name a few. Not all CF patients see all of these specialist, some do see all of them, and some have other specialists that they need to see as well (like transplant specialists if they are a candidate). Judith’s current CF team, for example, consists of her pulmonologist, dietician, CF nurses, her social worker, and the respiratory therapists when we need to see them.
Since CF is a rare and tricky disease, getting established with a team at a CFF accredited care center is key. There are over 110 centers in the CFF network, and not only do they provide care for patients, they also help with the research and studies!