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Living with Cystic Fibrosis

Mizuho Morrison, DO and Claire Wineland
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16:10

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Mizuho sits down with Claire Wineland a patient with Cystic fibrosis to learn what it is like to live with a chronic progressive terminal illness. Claire opens up about her experience.

Pearls:

  • We can help patients with terminal illnesses realize that they are not bound by their disease and can find meaning in life beyond just  getting well.

 

  • Claire Wineland is 20 year-old nationally renowned public speaker with cystic fibrosis

  • She has spent nearly a quarter of her life in hospitals and now offers powerful insight into what it is like to live with a terminal illness

  • Healthcare workers tend to view patients in terms of their illness (i.e. the 9-year-old with appendicitis)

  • Patients with terminal illness can find empowerment through study and ownership of their own illness

    • Taking ownership of one’s physical space in the hospital (i.e. decorating a hospital room) can create a safe and comfortable environment

  • Doctors should encourage patients to create space to live a rich and fulfilling lives outside of the treatment of their disease and to discourage fixation on just “getting better”

  • It does a disservice to our patients to support the idea that one cannot live a fulfilling life until they are healthy

  • We can help terminally ill patients realize their dreams in the time that they have left because there may never come a time where their disease is better than it is right now

Douglas S. -

This was an amazing segment. My first clinical rotation as a physician assistant student was general surgery. I was extremely nervous and admittedly scared a little. Early during my time there I met this wonderful cystic fibrosis patient. I would end all of my evening rounds with her room so I can spend time just talking to this wonderful person. With her wealth of medical experiences and relaxed attitude I believed she helped me relax and learn to talk with the patient as a person and not just define them as their disease.

Mike W., MD -

Great story - I remember so many patients from my early years - what an impact they have made on all of us!

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Lucy In The Sky With Diamonds Full episode audio for MD edition 181:42 min - 85 MB - M4AHippo Urgent Care RAP - December 2017 Written Summary 516 KB - PDF

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