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Lucy In The Sky With Diamonds

Living with Cystic Fibrosis

Mizuho Morrison, DO and Claire Wineland
00:00
16:10

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Tags Cystic Fibrosis · Mental Health · Palliative Care · Pediatrics · Pulmonary · Wellness

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!

Sylvia Z. -

This sweet girl passed away on September 2, 2018 after a massive stroke after she had a successful double lung transplant. I've been watching her youtube and facebook videos; she was an inspiring young woman. Heartbreaking that she's gone.

Mizuho M., DO -

Yes! What a tremendous loss! She will be missed but her message continues to inspire us. So much to learn from her maturity on life and death. Her foundation continues to serve the CF community. https://clairesplacefoundation.org/
An amazing young woman indeed. We were fortunate to have met her.

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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