Patient Experience – MGUS

By William Aird and Rushad Patell

What blood disease/condition have you been diagnosed with?MGUS
How old are you ?76
What gender do you identify with ?M
What symptoms did you notice?None that I can detect
How did the condition affect your life?It does not other than an initial psychological effect of discovering I have MGUS.
How would you describe your condition and/or treatment to someone outside of the medical profession?Currently a low risk pre-cancerous condition, recommending a yearly blood tests to check for any change.
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)Not much (some professional background), but described the events that led to the SPEP blood test that led to the MGUS discovery.
What did you appreciate about your healthcare team as you were navigating diagnosis and treatment?That BI Deaconess would take me as a patient, since the Mount Auburn system was disorganized regarding MGUS specialists and monitoring. To be consistent in terms of location, I also changed my Primary Care MD to one at BI.
Is there anything you wish your healthcare team had done differently?With regard to my current team, nothing that I can think of.
Did you feel your healthcare team cared about you?Yes I do
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