“I spent the first three days sitting next to my dad’s hospital bed, watching his chest rise and fall slowly. He was asleep the majority of the time, fighting off something unknown. Anytime he moved, I jumped up from my chair and stood where he c…
Category: Patients
Me is who I am
I awake each day, looking for the sunlight to brighten my life, just as you may do. I wonder who I will meet today who might have an impact on my life, just as it may be for you. I organize in my mind my “to do” list for the day … all…
4 things the chronically ill wish others understood
One of the difficulties faced by those of us who are chronically ill (which includes chronic pain) is that others don’t understand what we’re going through. Our culture does a poor job of educating people about health challenges even though they’re a n…
Support groups are life-changing for many patients
“Gimme five,” the TV doctor said to his little patient as he entered the exam room. As I watched this scene in an evening TV program, I was reminded of one of my pediatric practice’s most gratifying stories, which happened over 20 yea…
The dark horse of the care team: a parent’s perspective on hospital chaplains
When you think of a hospital chaplain, what comes to mind? A bearer of bad news? An imminent turn for the worse? A symbol of death and dying? That’s what I used to think. Chaplains showed up in end-of-life situations, and I’d give anything …
When records are wrong, patients are at risk [PODCAST]
“Inaccurate patient records aren’t just an inconvenience. They’re a risk. The EHR might speak for the patient when they cannot speak for themselves, and if it’s wrong, it’s a serious liability. In lieu of any system-wide improvements to EHRs, I t…
I will keep my advocacy sword polished and ready [PODCAST]
“I recognize that finding time for staff training and making sure the training is effectively practiced are challenges in a busy clinical setting. But taking care of patients means that both goals must be met to ensure safety, quality, and best p…
From a patient to health care workers: Always remember your humanity [PODCAST]
“Always remember your humanity. You are not super-human. Make connections to your heart, to your mind, to others. Look closely at the situation that lies before you, listen carefully to all that is around you, and calm the pounding heart. Dig dee…
A heart transplant story in a 1-year-old, as told by his mother [PODCAST]
“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 Nick was discharged, I discussed it briefly with Dr. Ka…
The advocate’s sword stands polished and ready
“The weapon of the advocate is the sword of the soldier, not the dagger of the assassin,” according to journalist and writer, Alexander Cockburn. The sword of the advocate, whether used for oneself or a loved one, may also end up opening doors that can…
