Patient Experience – Chronic neutropenia

By William Aird and Rushad Patell

What blood disease/condition have you been diagnosed with?Chronic neutropenia
How old are you ?35
What gender do you identify with ?F
What symptoms did you notice?Extreme fatigue, occasional night sweats, canker sores and a metal taste.
How did the condition affect your life?It has given me anxiety for the fear of getting sick and not be able to fight it off. I have been hospitalized a few times from a fever. I’m also exhausted all the time.
How would you describe your condition and/or treatment to someone outside of the medical profession?I do not have the white cells to fight off infection
What personal information, if any, did you share with your healthcare team to assist in the development of a treatment plan (e.g., religious/spiritual beliefs, values, hobbies/interests)N/A
What did you appreciate about your healthcare team as you were navigating diagnosis and treatment?They were able to put me under for my second bone marrow biopsy.
Is there anything you wish your healthcare team had done differently?No
Did you feel your healthcare team cared about you?Yes
Did you have ample time to meet with and discuss your condition/concerns with your healthcare team?Yes
Do you feel like your healthcare team listened to you and/or validated your concerns?Yes
Did your health care team respond to any questions you had?Yes
Did the health care team communicate with you in ways that you understood?Yes
Do you have any other thoughts you would like to share about you experience is general dealing with the blood disease/condition and your interactions with healthcare in trying to manage it?No