| Question/Parameter | Response |
|---|---|
| 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 |
Nov
10
2022