Nye emphasizes that it is vital for all of us to become "better patients.” You should arrive at your first appointment with any new doctor or specialist with a medical summary letter to hand them.
“So many people [are quite nervous] when they arrive, and they can offer up a sort of scrambled collection of facts - much of it hazy. This makes a patient harder to accurately diagnose. Nye believes that when patients cannot remember their medical history well it is important to have a medical summary and a support person to keep them on track. Below you will find what to put in a medical summary and which questions you should be prepared to answer in detail at a first appointment when ill.
Nye has also been a patient. In 2004, she was found to be missing 50% of her red blood cells and was later diagnosed with myelodysplastic syndrome (MDS), a type of blood cancer. It was an immense shock to receive such a life-shortening diagnosis. She had “never been the person in the bed,” but was always advocating “for the person in the bed.” Diagnosed at age 50, Nye required red blood cell transfusions for four years. Now 17 years has passed. Her red blood cell counts and all other cell count tests returned to normal 11+ years ago.
Since 2007, when she became a hospice volunteer, Nye has made the End of Life an additional specialty. Since 2015, she has moved into hospice bereavement group facilitation. She co-facilitates 8 week long grief support groups with a particular emphasis on the use of expressive writing.
Nye has “re-oriented [herself] to support those who are grieving after a key death. "It is energizing to emotionally support folks who are returning back to Life itself. I find it incredibly meaningful.”
Nye emphasizes that her extensive End of Life volunteering is “a tremendous learning tool. I am continuously learning about Life by staying close to death.” Nye notes that when death was closer at hand, in the past, “We were better at helping those who are grieving to be with their grief and so to heal. We respected and dignified the grief of those who were in mourning. Today, such cultural understandings are often lost. We need to re-learn how to support those who are grieving and in deep pain.” Needless to say, Covid-19 has only greatly increased the need for such grief education. Here is solid advice for those who want to support the grievers among us:
https://www.cancercare.org/publications/67-how_to_help_someone_who_is_grieving
1. A medical summary includes:
highlights & dates of your major medical events
present symptoms & how and when they appear & for how long
dates of work-ups & test results received thus far
relevant past medical history
potential risk factors & allergies
possible contributions from family history
current medications
some personal history
Every patient should be ready to answer these questions accurately:
What is your main symptom or medical concern?
How long have you had it?
How often and when does it occur?
What, if anything, appears to worsen your symptom or condition — for example, activity, food, position, stress?
What, if anything, appears to improve your symptom or condition — for example, medication, increasing activity?
Is your main symptom or medical concern associated with other symptoms?
Is there a family history of this health problem?
Do you have any allergies?
What do you hope to achieve with this appointment?
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