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    • #19107
      William Ryan
      Moderator

        No CF clinic is the same. They each have their own unique traits but definitely share two things in common: love and care for all of us dealing with CF. I absolutely view my Doctor like a nurturing and funny Aunt.

         

        What is your CF clinic like? What is one word you’d use to describe them?

      • #19108
        Stacy French
        Participant

          My Cf clinic is not for the elderly with CF nor their hospital for CF anyone… the CF ward although newly redone reeks of aspergillus mold.. it is in the masks and the linens and all things that can retain smell.  The building is old and in need of a complete redo.   As a patient, I guess I phone when I think I need to see a doctor… it was at one time every three months that I would be scheduled to come in … no longer… no doctor has ever made future appointments in the past four years.  I have to phone if I need to see someone.  I have been given a new medication for bones which I had to stop using, there was no follow-up appointment made to check on me.  It is quite disheartening.  I did originally travel to North Carolina at UNC however it now has become quite impossible.  My sister goes there and her doctors see her every 3 months… I’m lucky to get an appointment with someone in 3 months.  (oh unless I want to do it facetime) I think is it a bit disgraceful that there is such a lack of care and concern for the patient..this past year,  I had complained quite a bit of difficulty in breathing… 3 months later a heart attack.  Not one doctor looked into it, it was just written off as  CF related issues even though my record shows my mother died of it.   It is sad there is no good clinic here.  It is sad that an elderly newer diagnosed CF patient is ignored… the young elderly (18 and over) seem to be all they are concerned with.   I may have not had a heart attack were anyone listening to me.   But so it goes.  I wish I could move but I am not able.

          • #19110
            William Ryan
            Moderator

              I wish you the best of luck in finding a new care team. It’s disappointing to hear about your issues and I hope that you’re able to get better treatment.

            • #19111
              William Ryan
              Moderator

                I wish you the best of luck in finding a new care team. It’s disappointing to hear about your issues and I hope that you’re able to get better treatment.

            • #19128
              Gina Michele
              Participant

                The CF clinic that I visit is so incredibly familial and caring – and treat even me (not the CF patient, but the spouse of the CF patient) like they’ve known me my whole life, understand and support me in my integral role as the CF caregiver, and with true love and regard.

                • #19132
                  William Ryan
                  Moderator

                    They sound like a phenomenal center!

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