Patient Experience – Essential Thrombocythemia

By William Aird and Rushad Patell

What blood disease/condition have you been diagnosed with?Essential thrombocythemia
How old are you ?54
What gender do you identify with ?M
What is your ethnicity ?Italian American
What symptoms did you notice?None
How did the condition affect your life?So far no effect except taking 2 pills per day, going for a follow up appointment once per year, and worrying it might get worse.
How would you describe your condition and/or treatment to someone outside of the medical profession?I have an abnormally high number of platelets in my blood such that it could possibly cause me to get an unwanted clot.
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)I shared that doctors freak me out – even though I love my doctors! I just get nervous that I will get bad news.
What did you appreciate about your healthcare team as you were navigating diagnosis and treatment?Very caring, helpful, and understanding.
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!
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?You guys have been great, thank you for taking care of me.