A-Fib Patient Story #85

GPA Disease Means No Blood Thinners: How to Deal with A-Fib Stroke Risk?

By William F. Covert, May 2016

My symptoms started with dizziness and constant fatigue. Several trips to my family physician proved to be futile.

2012: “Let Me Take a Quick Pulse Reading by Hand”

William F Covert

On my last exam, the doctor stopped me as we were walking out of the exam room and said, “Let me take a quick pulse reading by hand.” (Blood pressure machines normally do not detect irregular heartbeat.) She did so, then performed an EKG. “You have A-Fib. Can you go to a cardiologist right now?”

This was my introduction to the world of A-Fib!

I saw a cardiologist the same day (November 2012) who put me on Xarelto (a blood thinner) and scheduled me for an Electrocardioversion a month later.

It was successful and kept me A-Fib free…for 15 months.

After my cardioversion, I was prescribed Sotalol (an antiarrhythmic medicine) for 15 months. But when I went back into A-Fib, they discontinued the Sotalol. They felt that, since the Sotalol didn’t prevent me from relapsing into A-Fib, there was no use in taking it.

2014: Coughing Up Blood

I began to cough up drops of blood. At first it was occasional. Then as time passed, it became more frequent and larger amounts. Doctors thought that the use of Xarelto was the probable cause of the bleeding and advised me to stop the anticoagulant for 6 weeks, and hopefully the bleeding would stop.

Unfortunately, it got worse. A second CAT scan 4 weeks later revealed my lungs were full of blood.

I was diagnosed with a disease called Wegener’s (GPA-Granulomatosis with Polyangiitis), an uncommon disorder that causes inflammation of certain blood vessels. I was never told that Xarelto triggered the Wegener’s, but it certainly could make the bleeding worse.

Back in A-Fib, but Can’t Take Blood Thinners

The Wegener’s (GPA) caused damage and bleeding to my lungs, and I went back into A-Fib on March 31, 2014.

I was subsequently taken off of blood thinners and put on a low dose aspirin regimen to provide some element of safety from an A-Fib-related stroke.

Because of the Wegener’s, I would not be able to take blood thinners like warfarin (Coumadin) or Xarelto on a long-term basis.

Stroke Risk: Alternatives to Blood Thinners

I was acutely aware of the potential stroke possibility, because of being in A-Fib and not being able to take blood thinners. With A-Fib you need blood thinners to prevent a stroke. But Wegener’s (GPA) is a disease that causes bleeding. Blood thinners would only exacerbate the problem.

My cardiologist discussed the various alternatives to blood thinners. Some were invasive and not recommended because of my age (79).

After a few visits, my cardiologist told me about a new procedure using the Watchman device which would both help protect me from an A-Fib stroke and afterwards not require me to take anticoagulants.

[The Watchman Device closes off the Left Atrial Appendage (LAA) where 90%-95% of A-Fib clots and strokes come from.]

The Watchman Device: Weighing the Odds

If I decided to have the Watchman device installed, I would be required to be on the anticoagulant warfarin for 45 days afterwards. Then I’d need to take Plavix (similar to aspirin) for 6 months after that.

Why Coumadin and Plavix After Installing the Watchman? 

In the U.S., the Food & Drug Administration (FDA) requires the use of warfarin after installing the Watchman because it takes about 45 days for the thin layer of heart tissue to grow over the device. This is to insure you won’t have any blood clots that could pass around it and cause a stroke.

You will have a Transesophageal Echocardiogram (TEE) to determine the progress at the 45-day period and again at 6 months until Plavix can be stopped. Plavix is another requirement of the FDA. Doctors have to follow the FDA guidelines. (Boston Scientific is the manufacturer of the Watchman.)

For someone like me with Wegener’s, even this short a time on warfarin and Plavix was risky. But the effects of a stroke would be for life or might kill me.

My doctors would not offer their okay for me to be on warfarin and Plavix, even for that short a time.

Getting a Second Opinion: I also visited the Mayo Clinic in Rochester, MN for a second opinion. The pulmonologist (specialist in lungs and respiratory system) said that, because my Wegener’s was then in remission, a short course of blood thinners would be OK. However, the cardiologist told me he did not recommend doing this.

Bottom line: It had to be my decision.

2016: Chooses the Watchman (at Age 79)

After researching and reading the reports about all the clinical trials in the U.S. and the Watchman success stories in Europe, I decided, “This is for me!” I would go for the Watchman. This was better odds for me.

Catheter placing Watchman in LAA

The procedure to insert the Watchman device took less than 2 hours at Ochsner Hospital, New Orleans, LA, January 20, 2016 by Dr. Stephen Ramee, Interventional Cardiologist.

I was on warfarin for a total of 45 days, and now I’m on Plavix for 6 months―till the middle of September 2016.

So far everything is going fine with me―but I’ll be glad when I’m finished with the Plavix.

I Still Have A-Fib, But It doesn’t Keep Me Down

I have A-Fib symptoms all the time. I feel the fibrillation, and it causes dizziness and fatigue. But I am better in the AM and get more fatigued around 2:00 PM. This doesn’t keep me down. I take care of our yard, play golf and travel, etc. My blood pressure medicine has been adjusted to assist in decreasing the light-headedness and fatigue. However, the GPA (Wegener’s) medication that I have to take can also cause these types of reactions.

I am now taking 100 mg of metoprolol daily which seems to be controlling my heart rate, although erratically. My heart rate is usually between 65-75 beats per minute.

Lessons Learned

If you have A-Fib and have other heart issues that will not allow blood thinners, consider the Watchman device implant.

I have never looked back and believe it was a great decision for me.

[William invites you to email him with your questions about Wegener’s disease and the Watchman device.]

William F. Covert, New Orleans, LA
covach(at)cox.net

Editor’s comments

Kudos to William for being proactive, educating himself, getting a second opinion and dealing with a very difficult situation.

William’s dilemma is not unique. Many people with A-Fib can’t tolerate or react badly to anticoagulants. Without anticoagulants, they are 4-5 times more likely to suffer an A-Fib stroke. With 90%-95% of A-Fib clots coming from the Left Atrial Appendage (LAA), the Watchman device (and other occlusion devices) are a welcome alternative to anticoagulants.

Guarantee Against Stroke? Does the Watchman Device guarantee William will never have an A-Fib or other kind of stroke? No. Like anticoagulants, the Watchman device basically reduces William’s stroke risk to that of a normal heart-healthy person (but they can have a stroke, too). There is nothing on the market that will absolutely guarantee you will never have a stroke. However, the Watchman Device comes close and it’s better than a lifetime on warfarin. (Be advised that clots and stroke can develop in other areas than just the LAA.)

William Can Still Have a Catheter Ablation: While William is protected from A-Fib stroke, he still has A-Fib. If he so chooses, he can have a catheter ablation to fix his A-Fib. Many EPs routinely perform a catheter ablation on people who have had a Watchman device installed, especially in Europe where they have been using the Watchman device since 2004. See: A Watchman and Ablation Combo? Everything You Never Thought to Ask.

Be proactive! Learn from William’s story. If he hadn’t done his own research and got second opinions, he might already have suffered an A-Fib stroke.

For more about the Watchman, see my two articles: Watchman Device Option to Blood Thinners and Watchman Better Than a Life on Warfarin.

Read other stories of A-Fib patients dealing with Atrial Fibrillation: see Personal A-Fib Stories.

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