Over the holidays I got a ‘gift’ from Tina Fey. I will tell you about it in my next post but I decided that today I wanted to share with you a story I wrote for the Huffington Post.
(If you’d like to hear about my ‘gift’ from Tina, be sure to subscribe to the ParmFarm! (It’s free!) and I’ll send it right to your inbox.)
My mother’s friends used to kid… “You get more done before 9 a.m. than I get done in a week!”
She was known for her energy, her positive outlook and her love of life. She’d traveled the world, visiting both Antarctica and the Amazon — in her 70s. And then, in September of 2010, she had open heart surgery and got a pacemaker.
No worries. I knew the recovery would take time, she’d likely fatigue easily for months and may even experience depression, as many heart patients do. But, eventually, she’d be good as new.
And then I lost her.
My mother did not die. But for the next year and a half the person struggling to recover from surgery did not resemble, in almost any fashion, the woman who went in.
She was exhausted constantly. The slightest effort — something as simple as pulling a few pairs of pants from the dryer — required her to sit for 10 minutes and recover before she’d have the strength to fold them.
This woman, who often walked three to five miles with friends, couldn’t make it up the slightest incline, let alone any distance. Equally as frightening, her short term memory was shot. I wondered to myself if she had suffered a minor stroke.
She couldn’t remember entire conversations, missed appointments and forgot to pay bills. She was humiliated more than once when she would call a friend only to have them say ‘Sue, we just talked about this…”
So she stopped calling. She barely went out. The woman I had only known as fun-loving was constantly irritable and understandably depressed. She just sat in her blue chair, watching TV and weeping quietly to herself.
How To Be Heard
And then I remembered. From years of watching my disabled brother be discounted by doctors, I remembered.
You have to be an advocate. You have to demand attention. It is the only way you will get it.
You will not believe how this story unfolds…
For a year and a half my mother told every doctor she saw that she felt horrible and had no energy. She asked about the pacemaker, “can’t they turn it up??”
She’s 78 years old. So I guess they didn’t care. But I did. Two weeks ago I called her cardiologist and started the conversation by saying this:
“I’m not going to mince words. I feel like you ruined my mother.” I described in detail what I had observed. It was really no different than what my mother herself had told him but her concerns were dismissed and so was she. “Everything looks good. See you in a year.”
Dismissing my concerns was not an option. So, this time, the doctor scheduled a “stress echo” — a test that would allow him to look at my mom’s heart “under stress,” in other words, while she walked on a treadmill. Why this was not ordered sooner I will never know.
The test was done last Tuesday at 7:15 a.m. And at 8 p.m. he called with results. “I’ve got good news,” he said. “Your mother’s aortic valve is fine. Her heart is fine. But…
HER PACEMAKER WAS PROGRAMMED BACKWARDS.”
That’s right. Backwards.
He went on to explain that any time my mom exerted any energy — standing up, walking, showering — when the pacemaker should have pushed her heart rate up… instead it was pushing it down.
The next day it took the pacemaker doctor five minutes to fix the problem (not counting the amount of time I spent “expressing” myself).
In a matter of minutes I saw color return to a face that had been ashen for more than a year. The same woman who walked timidly into the doctor’s office practically jumped for joy on her way out and all but ran back to the car.
I got my mom back. But, just as easily, I might not have. She could have dropped dead or had a stroke and we would never have known what happened.
I write about learning experiences. I would like you to learn from mine.
Don’t assume there is “care” in healthcare because all too often, there isn’t.
I would love to hear your thoughts…