My Story: Multiple Sclerosis, Kidney Stones And Advocating For Ourselves
Last week I had the first of two lithotripsies, a procedure performed to break up kidney stones in order to make them passable through urination. I wasn’t nervous. I had this procedure six years ago. Yet the thought of lying on yet another cold, flat metal table (I’ve had appendectomy and gallbladder surgeries) while a medical team knocks you out (if you’re awake the blasting of stones would be excruciatingly painful) and performs their magic was a bit unnerving.
Thank goodness for anesthesia. I remember transferring myself from the stretcher to the operating table. That’s it. When I woke up I asked the nurse standing beside me when the procedure would begin. She chuckled and said, “You’re in the recovery room!”
Without my glasses on I can’t see a thing. The staff must have had a good laugh on me.
For a change of pace I thought I’d write a positive post to illustrate the way healthcare should work, because a patient should always be treated with the respect and dignity they deserve.
That’s how I was treated in the hospital.
Over the years I’ve met countless compassionate nurses. I’ve written about them in my blog. I think nurses are extraordinary because they not only tend to your physical needs but also to your emotional ones.
In the hospital I had at least five nurses tending to my needs. The hospitalist came in as well, and one by one they described to me, in great detail and understandable terms, what would take place during my outpatient procedure.
They answered my questions, and told me there was nothing to worry about. They complimented me on making an informed choice by taking a proactive step to blast the stones instead of waiting for what could be a painful experience.
I should know. Last time I didn't have the luxury of waiting to make a decision. The stones tried to pass on their own. It was a pain worse than childbirth.
The hospitalist and my own (new) urologist were patient in explaining not only about the procedure but also about the location of my three stones and what to expect after the lithotripsy.
Everything went smoothly. The nurses in the recovery room were gentle, and back in my room in the same day surgery wing they were very nurturing.
I know the problems of the healthcare system are complex and varied, and that my experience doesn't make a huge impact on the issues that we face. But one story can make a difference in someone’s life, and that’s why I offer mine now.
I know too well how things can go terribly wrong.
When I had gallstones six years ago I was in the ER for six hours. Once I was called on it took several hours to be seen by a doctor. I was placed on a stretcher in a hallway where I remained until a doctor finally examined me in front of other patient's and their families. As if that wasn't bad enough he misdiagnosed my condition.
It was a nightmare, and I changed my doctors to make sure they were affiliated with better hospitals. I drive far for good medical care. It's more than worth it.
Advocating for yourself by making informed choices about your healthcare is the best way to care for your physical and emotional needs. Here are four tips to help you get the care you deserve:
- Get referrals for specialists (urologists, nephrologists, cardiologists, etc.) from your physician or a trusted friend who had a similar condition.
- Rely on trusted websites to research your list of specialists. Call each specialist to find out what insurance they accept and what hospital(s) they are affiliated with.
- Research the ratings of hospitals.
- Find out more about your condition by using trusted websites. There are plenty of sites providing bad advice. Stay away from them. Websites such as The Mayo Clinic or Johns Hopkins, or a .gov (government) website, are always reliable.
Doing your homework is the best thing you can do for yourself. I wish for you a stone free journey!
Do you live with any comorbidities aside from MS?