Wednesday, 9 April 2014

I am patient, hear me roar

My mother spent over a year in the Toronto Hospital wasting away from a bowel blockage the doctors found only when they opened her up as a last resort. She died two weeks later of an infection. She was 67.
I wish I had been in Toronto to be her health advocate. but I was here, in Ottawa, busy rearing three small children and living my entitled lifestyle. I wasn't even there at the end -- I couldn't bear to be the one to pull the plug. Afterwards, my solid brother Gary, who cared for her in final days in London, Ontario, told me a story.
After her operation, she was left with a colostomy bag which she had to empty. It was a difficult miserable existence for Vera who by then was only 85 pounds. She soldiered on, of course; it's how women in our family are built.
She got out of bed one night and walked into the hospital bathroom to empty her bag and it broke. There was shit everywhere.
An orderly came in, cleaned her up, looked at her chart and said: "Boy, you're really ripping off OHIP aren't you?"
It was the ultimate humiliation for a woman whose health problems were not taken seriously. And the story is ingrained in my psyche. I have promised myself that I would never let the health care system treat me like a subhuman because I have a condition that is not glamorous or fundraised for.
And so it was I had my first real encounter with the health care system this week as my own health care advocate. I presented at the hospital ER once and was sent home without the doctor laying hands on me. I presented at the hospital a second time and was sent home with a diagnosis of gallstones, without being given an ultrasound which would have determined whether or not my gallbladder was in distress.
I left with no information about this disease and told to go to my family doctor who shrugged off my searing pain and gave me a script for a medication that wasn't even covered under my extended health plan. He also gave me no information and I was left wondering what the hell had happened to me.
This morning I got up and called Telehealth and had a long chat with one of their agents whom I believe is supposed to be a medical professional.
I grilled him, as any good journalist would about my condition and my options. (The government spends millions advertising options and I wanted some.)
He told me to go back to the ER if I had a fever or my eyes turned yellow. Otherwise, he said, get in the queue.
It's not likely the gallstones that have been ripping apart my insides are life-threatening, generally speaking. He also said I'd probably get the gallbladder taken out, which is the go-to solution for this disease. But he warned, it would be after I'd had an ultrasound, after the results were mailed to my doctor, after a specialist had a look.
Huh, I thought, I could have saved everybody time and money if the hospital had given me the ultrasound in the first place.
Enquiring minds want to know, so I spent the day googling the symptoms and bent the ear, virtually speaking, of a nice nurse I met on Facebook. And here is what I found out.
People who are at highest risk are women, who are twice as likely to have gallstones than men. Generally, those are risk have the following five factors. They are: Female, Full figure, Fair skinned, Forty and over and Fertile. I had all those markers except the last one.
But the big red flag is dieting.
Many people experience gallbladder attacks and develop stones while on a drastic low fat diet, as I was when my attack occurred. This makes gallbladder attacks a women's issue because, let's face it, if we have the markers, we are being urged by both the medical community and doctors to lose weight.
I am a yo-yo dieter, I'll admit it. I've tried for a decade to lose the weight I put on after menopause and so the quick and easy solutions that are on all the medical chat shows have appeal.
No one ever told me this could happen to me.
No doctor, no diet disclaimer, nobody.
And now that I'm in my fifth day of agonizing pain, I feel like an orphan patient. The hospital shrugs, the doctor laughs. Nowhere have I been able to find out about the process that I'm going through except from Facebook friends who have had the experience.
I don't know what to eat. I'm wary of easy solutions.
I don't know whether there will be surgery in my future.
How do I know what my triggers are, other than finding out when I'm writhing on the floor in agony?
Nobody is calling me back. The websites are imprecise. The doctor is unhelpful.
I stand corrected. There has been one person who has been helpful.
My pharmacist, Sam, who works at a tiny pharmacy on the corner, went to bat for me two days ago and convinced my doctor to give me a medication that would stop the "colic", those convulsions you get that are so painful.
He called my doctor to change the script and Doctor Ben agreed.
So yesterday, Sam gave me a new script which has ended my excruciating back pain and has let me go to the bathroom for the first time in days.
I'm still not over this ordeal, but with a few yoga exercises and Sam's magic pills, I'm getting there.
In the meantime, the dieting is over.
I've learned my lesson.
Better fat, fit and over forty than feeling like you're dying on the bathroom floor.

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