Rosalie Ungar is the author of IN A HEARTBEAT: The Ups & Downs of Life with Atrial Fib.
As promised in last week’s blog, expanded information on blood thinners will include my experiences with the new generation of blood thinning anticoagulants. All of this information and more can be found in my memoir: IN A HEARTBEAT: The Ups & Downs of Life with Atrial Fib.
In 2007 I had an ablation to get rid of the 5 electrical pathways causing my atrial fibrillation. In 1980 when I felt A-fib for the first time, I didn’t know what it was and proceeded to ignore it as long as I could. I hoped that it would get better or go away totally. It didn’t. Though the bouts I felt were sporadic, eventually they became longer and stronger. My electrophysiologist told me that atrial fib begets atrial fib.
A stroke was in my future. Protection from a stroke was the blood thinner, warfarin, to keep from forming a clot, and an anti-arrhythmia, amiodarone, to keep the heart in rhythm. The pacemaker kept my heart rhythm from going too low. It was not effective if I went into atrial fib rhythm over 180 beats per minute. My hopes relied on a new procedure called an ablation.
The ablation was a success…mostly. Only 4 of the 5 electrical pathways could be ablated. The 5th one was too close to the esophagus and there was a danger of damage occurring if the procedure went that close (with the technology available in 2007).
I was feeling good for the first time in years. My doctor kept me on a lesser dose of warfarin for another year, a good call. Six months after the ablation, the 5th electrical pathway, close to the esophagus, showed up during a routine pacemaker check. It was causing havoc showing 500 short episodes of atrial fibrillation.
I was put on a different anti-arrhythmia, sotalol. It worked. It’s still working. I haven’t been in A-fib for 11 years. Pacemaker checks would report if I had been.
Life was great. During my yearly checkup with the electrophysiologist in 2013, he announced that I should go back on a blood thinner.
“Why?” I asked.
“For protection. We go by a point system, 4 points and more tell us you should be on a blood thinner:
- You are over 75, 1 point.
- You are a woman, 2 points.”
- I reminded him that was only 3 points and since I hadn’t had atrial fib for 12 years I felt safe from a stroke.
“Besides,” I said, “I exercise, eat a healthy diet, the sotalol agrees with me, I‘ve reversed heart muscle damage from heart attacks, my EKG, pacemaker checks and stress test results perfect and my numbers are good—HDL, LDL and more. I don’t want to take a blood thinner! Besides so much advancement has been made on strokes, if patients get to the hospital within an hour or two, the stroke could do less damage than a blood thinner.”
We compromised: I carry an undated prescription in my wallet for a new generation blood thinner, apixaban, brand name Eloquis, if I go into A-fib for more than 6 hours. He updates it every year. It’s been 6 years.
The new generational blood thinners aren’t old enough to have generic replacements and they are expensive. Even with insurance, co-pays can be as high as $400 per month. Manufacturers will offer assistance for low income patients and patients on Medicare. It takes some searching, but can be worth it.
My Mantra is to be your own advocate. Know your own body. Make your own educated medical decisions based on what you’ve studied. Ask questions. Don’t stick your head in the sand. Beware of a natural decision to delay treatment and pretend, as one of my friends did, that the diagnosis can be ignored. We’ve all done that and sometimes it can be deadly. Establish a working relationship with your doctor(s). If you have a communication problem with them, discuss it with them.
The question I get most from readers is about what to do if you and your doctor don’t agree—to be covered in a future blog.