If Nothing Else, Ask…

“What happens next?”

If there’s one question that will really get to the heart of what’s going on with your health, that’s the one to ask your doctor. It’s a great way to clarify information if your doctor just delivered less than good news and your head is spinning.

If you feel that you understand the big picture, asking “what happens next?” will break down a diagnosis into smaller steps. It can prompt a conversation about scheduling and timelines, how you may feel as things progress, or treatment options you may be able to choose at each step in your care.

This little gem of a question was tucked into an enlightening list from Reader’s Digest entitled “50 Secrets Your Nurse Won’t Tell You”. Author Michelle Crouch compiled the responses from nurses across the country.

Here’s the excerpt from #45, contributed by Wisconsin nurse Kristin Baird:

At the end of an appointment, ask yourself: Do I know what's happening next? If you had blood drawn, find out who's calling who with the results, and when. People assume that if they haven't heard from anyone, nothing is wrong. But I've heard horror stories. One positive biopsy sat under a pile of papers for three weeks."

A simple "what happens next?" can put everyone involved on the right track.

Being An Expert Outside Your Field of Expertise

Everyone within arm’s reach of a keyboard has felt the need to pen a tribute to Steve Jobs. And I had no intention of joining the homage-fest to the Apple co-founder, though I’m fascinated by his creative mind and visionary success. Then a paragraph in Rolling Stone magazine’s tribute jumped off the page:

As his illness worsened, Jobs found his life narrow even further. He didn’t go out at night, never accepted awards, gave no speeches, attended no parties. Instead, he holed up in his home in Palo Alto, where he hung out with his family and learned everything he could about cancer- and how he might beat it. “He knew more about it than any oncologist,” says his old friend Larry Brilliant, who is an MD. His body grew thinner and thinner, and he took a six-month leave from Apple to have a liver transplant.

-Jeff Goodell, Rolling Stone, Oct. 27 2011

We all know how the story ends - dead at 56.

So the thing to honor about Steve Jobs is that he was one of us. He was a patient, desperate for knowledge. In the end, his condition put him on an even playing field with everyone who’s ever been on the receiving end of a diagnosis. The lesson is in how he spent his time – education, research, bringing his own facts into consultations, becoming an expert in his own disease. For every patient who does the same, it’s a life well lived.

Long live Steve Jobs.

(Photo: Rolling Stone)

A Spunky Guy In Richmond I'd Like To Meet

As I write, the five-hour drive to Virginia would land me four hours too late to meet Bob Wendell. A shame, because he’s 92 and a classical bass player-turned harmonica recording artist. Plus he’s the compelling example on a panel discussion this evening about today’s fragmented healthcare system - a system that could debilitate or even kill a senior who isn't savvy enough to keep medications and doctor’s orders straight. In other words, a senior who's not Bob Wendell.

His story was originally told here in Richmond Magazine.

Wendell’s litany of health concerns includes five strokes, swallowing problems that mean he eats some food and gets the rest through a feeding tube in his stomach, and caring for his wife of 30 years who has advanced Alzheimer’s. Wendell’s search for second opinions and active participation in his own care mean he continues to lead a full and happy life. His ability and desire to take charge of his health is a great lesson that he teaches to neighbors in his senior building, where he’s president of the residents association.

Tonight’s event at WCVE public radio brings together experts to elaborate on the magazine story. It’s a public discussion which will be recorded and broadcast on October 16 here and over the air.

And it all rings so true with PatientLovingCare.com’s central purpose – to provide patients and caregivers the tools they need to navigate the medical maze. In the spirit of Bob Wendell and others like him, we hope our doctor’s memo is a start and inspires you to take charge of your own care.

Some day, it could save your life.

(Photo: Bob Wendell, RichmondMagazine.com)

Newsy Tuesday

Welcome to Newsy Tuesday. Pour yourself a cuppa whatever you'd like and pick from amongst this collection of good reads. It's like a mini gym visit for your mind - refreshing!

Autistic and Seeking a Place in the Adult World
Here's an expertly written story from the New York Times, told from the perspective of a New Jersey boy. Tender without being maudlin.

The Creative Brain on Exercise
I just may do a full-blown post on this one, although at patientlovingcare.com I'm preaching to the choir about the mental benefits and disease-fighting power of exercise.

New Drug-Free Treatment for Depressed Teens
If your life includes a teen with mental health issues, you know all about the medication high-wire balancing act. 3GenFamily blogs about a study on the effectiveness of non-pharmacy treatment. Hooray for research!

A Story about Finding Assisted Living - Part I
This is a British blog with a name similar to ours. Unlike PLC, however, author Linda Abbit focuses solely on eldercare issues. I'm eagerly awaiting part II of this series on moving Aunt Sally to assisted living.

Enjoy, and bottoms up!

Show Me Your Fridge, I Dare You ;p

At a fashion shoot, photographers will occasionally step away from their professional cameras to take a cheap snapshot. It gives a quick, fresh perspective and it’s an easy way to spot adjustments to lighting, background and pose in order to get that perfect shot.

So, what if you used the same technique with your life: snapshots to get a fresh perspective? I dare you – right now- to go and snap a picture of the inside of your fridge. Since in my fridge you might spot that black, fuzzy thing at the back of the bottom shelf, I’ll let words describe my picture:

• half a cake
• apples
• leftover fries
• milk
• homemade mac and cheese

Not too bad, but there’s probably room for improvement. Knowing you might want another peek soon, I’ll shop a little wiser today and be able to show off salad fixings, some more fruit and maybe some OJ next time.

Even if you're not going public with such info, taking a snapshot is a great idea to make us more aware of our daily choices. In fact, the idea comes from a group of researchers who used cell phone pictures as a creative way to combat disease.

Since a major cause of chronic disease is individuals’ everyday health-related decisions that affect long-term health, the researchers gave families cheap cell phones for the purpose of snapping pictures related to day to day activities. Simply drawing attention to what went on over the course of the day prompted families to think about what easy adjustments they could make to improve their health. Counselors also reviewed the information with the families and added nutrition education and health tips to further encourage a healthier lifestyle. (Find the full study here in the Journal of Participatory Medicine.)

The premise again is this: A major cause of chronic disease is individuals’ everyday health-related decisions that affect long-term health.

Put that up behind a fridge magnet and ponder it.

The Brakes On the Wheelchair

Last month, I felt quite clever but at the same time irritated that by the third visit to the hospital we were able to navigate the long walk from the front lobby to ICU without a map. After all, I didn’t sign up for this stint of several visits a day. It was involuntary enlistment.

Nevertheless, in such circumstances you learn the ropes and develop a routine. Being a quick study conserved my energy for more important things. What I noticed though, was how attentively the Cleveland Clinic hospital where my father was admitted eased the stress of family visits with simple courtesy.

Staff at all levels seemed trained to be mindful of visitors. Recognizing – and alleviating - bewilderment is apparently a priority. You get a map every time you check in. Stand still in a hallway for just a moment and staff – whether housekeeping, a tech or a doctor – ask how they can help to direct you. Everyone seemed to understand that – with the possible exception of the maternity floor – every visitor in the building wished they didn’t have to be there.

My first inkling I'd be catered to in this way came at the entrance, where visitor wheelchairs are stashed . On my first visit after arriving in town, the usually abundant supply was gone but a valet traipsed through two departments to retrieve one for us. Then, after we arrived at ICU, I realized my ignorance with this basic piece of equipment – fumbling at first until an aide pointed out the brake that would keep the wheelchair from scooting across the room, landing the occupant squarely on the floor (!).

Like everything else in healthcare, treatment of patient families is institutionalized and codified. In fact, my research on the subject turned up a press release from the Disney Institute announcing a new training module on family interaction for the purpose of increasing hospital satisfaction ratings, which are about to become a matter of public record due to new government regulations.

But only so much civility can be taught in a seminar. At a hospital where veterans lead by example and empathy is valued, painful memories of a last hospital stay are softened by the kindness of strangers.

The Empty Blog

There's no need to write up a post today.

Just click here for a must-read inspiring story.

When you're done, you'll suddenly feel the strength to move mountains.


(Image via Facebook. Painting by Margaret Stineman.)