An excerpt from Nick’s New Heart: 30 Years and Counting. In January of 1991, at twenty-two months old, Nick had another heart catheterization. Andy and I had started thinking about the next stage of surgery to finish the heart repair. Just before…
Category: Patient
A patient’s perspective on genetic testing
I was sitting in a cold hospital room next to my husband, anxiously clutching his hand. The genetic counselor across from us withdrew a piece of paper from a white envelope and placed it on the table. She knew we were anxious to hear the results, so sh…
Medical facilities: Please keep your immune-deficient patients safe
“Go have a seat,” the receptionist at the imaging center told me, gesturing to the waiting room. It was a close, poorly ventilated space, and several of the chairs were already occupied. I turned back to the receptionist. ”I have a primary immune defic…
5 hidden consequences of chronic pain
Chronic pain affects almost every aspect of a person’s life. I know because I live with it every day. Here are five seldom-recognized and, thus, seldom-understood consequences of living with chronic pain. 1. Sleep deprivation Some people with chronic p…
Doctors and patients continue to search through the overgrown forest of corporate health care
It’s been a rough and difficult year for us. Separation, desperation, depression, illness, and death are scattered among the months that have passed by. Hope, for the longest time, seemed non-existent. The COVID virus gave the world a “suc…
The ultimate in patient empowerment: advance care planning
Some years ago, my husband and I sat with his mother at her kitchen table and went over advance care planning documents her doctor had given her. She was in her mid-70s then, living independently but managing several chronic health issues. The document…
Healer, are you so different from me?
My heart pumps rhythmically, as does yours, and aches when sadness strikes. I am stressed and discouraged when I feel I have no control over an illness that invades my body. Is this not true for you as you lay in your bed at night, feeling that “…
Who says doctors don’t care?
Yes Virginia, there are still some doctors who truly care for their patients. On December 13, 1993, my husband Bill was playing golf. Early in his round, he suffered a massive heart attack. Bill was 56 years old. Thanks to the staff and emergency ro…
The art of medicine: a patient’s perspective
“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” – Sir William Osler One of the most sacred and intimate relationships is that which …
The art of medicine: a patient’s perspective
“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” – Sir William Osler One of the most sacred and intimate relationships is that which …
