A-Fib Patient Story #90
Frustrated, Crosses Canadian Border for Ablation by Dr. Andrea Natale in Austin, TX
By Moni Minhas, Calgary, Alberta, Canada, October 2016
My wife, Rani Minhas, developed A-Fib in January 2015 when she was 61 years old. She felt dizzy when we were checking in for a flight from Barbados. She got better that day, and we took a later flight.
Over the next many months, she developed palpitations and A-Fib. We did not know it was A-Fib as we had never heard of the term.
“Get Used to It (A-Fib)…and It Will Get Worse.” NO! NO! NO!
Rani had fatigue and didn’t feel right. Before this, she was always healthy. She continued to exercise, as much as she could. But A-Fib really bothered her and made her feel both sick and anxious. Our whole family was worried about her.
Under the Canadian nationalized health care system, it took a lot of proactive action and aggressive approach to get proper help (which in the end wasn’t the proper treatment).
The first cardiologist suggested Rani start taking a blood thinner and dismissed A-Fib as something that “happens when you get old, get used to it; and it will get worse.”
He did not even prescribe beta blockers. Instead, he suggested a Blood Pressure medicine. Her BP that day was 165/90.
After waiting for weeks, we went to cardiologist #2. He prescribed beta blockers and recommended Rani take a higher dosage when she felt palpitations [known as pill-in-the-pocket drug therapy].
Frustrated! Searches Web and Finds the A-Fib Coach Steve Ryan
Frustrated, one day, I turned to my friend “Google” and found The A-Fib Coach. I contacted Steve Ryan and paid the small fee he charges [for one-to-one coaching]. Then I ordered the Beat Your A-Fib book he has written. I never read the book as it seemed scary to read (not the book but the symptoms and consequences of A-Fib!).
Steve was wonderful to talk to and told me about the Catheter Ablation procedure and gave me a lot of background on it and its benefits and risks, which were not many in my wife’s case.
Consultation with Dr. Thometz in Billings, Montana
I now went back to my friend “Google” and looked for an expert in Catheter Ablation close to our home in Calgary (Alberta Canada). Acrosss the U.S. border, I found someone in Billings, Montana. I made an appointment, and Rani and I drove 8 hours to Billings and stayed a night in the hotel.
The next morning, we spoke for 2 hours with Dr. Alan Thometz, the cardiac Electrophysiologist (EP) in Billings Clinic. He was very knowledgeable and helpful and answered every question we had. (We had a lot of help from Steve Ryan as to what questions to ask.)
We were comfortable with Dr. Thometz doing the procedure, but there was an 8 week wait. And Steve Ryan did not know him personally, which was not critical but was of some importance in deciding.
Let’s Find the Best EP in the USA
I asked Steve Ryan to suggest the best EP Cardiologist in the USA. He recommended Dr. Andrea Natale from Austin TX and Dr. Vivek Reddy in NY. We got an appointment with Dr. Natale quickly and in early June 2016 went for a catheter ablation procedure.
Ablation by Dr. Natale―No More Palpitations, No More A-Fib!
Dr. Natale did the procedure which took half a day. Rani stayed in the hospital overnight. Right after the procedure, we stayed in a hotel for another 10 days, even though it was not required. But I wanted Rani to be comfortable before coming home.
The procedure was great. No more A-Fib, no more palpitations. And no more beta blockers.
Recovery Period: 3 to 6 Months
We were told there is a 3 to 6 month recovery period [blanking period) for the heart to heal. Rani did have a few days of high BP and 1 day of low BP while her heart was healing. This is almost all gone, and she has 120 BP now on a regular basis which is perfect.
It has now been over 4 months, and Rani is now jogging and exercising every day. She does get some fatigue, but we feel pretty good that she will get over that by January 2017 based on trends. She takes BP medicine and a blood thinner (Xarelto), but I believe these are for the long term.
Gratitude to Steve Ryan
To say Steve Ryan was extremely helpful is an understatement. Without his guidance, we would not have known that Catheter Ablation is an option. Without him, we would not have found Dr. Natale. We haven’t met Steve Ryan in person, but the next time we’re in Los Angeles, we’ll take him out for dinner as a way of thanks.
Good health is the best gift we can have. If you have A-Fib (or any health issues), be aggressive and proactive in seeking treatment and advice.
Do not assume every healthcare professional is doing their job, including doctors and cardiologists. Use your own judgement and ask a lot of questions. Challenge the medical staff.
Be Proactive! Moni and Rani’s story is an excellent example of being proactive rather than passively living with A-Fib for the rest of her life.
I’m astounded that any doctor today would tell Rani and Moni to just live in A-Fib, “get used to…and it will get worse.”
Moni knew something was wrong with this doctor’s advice. He educated himself about A-Fib. He got second (and third) opinions. He didn’t let his beloved wife, Rani, suffer from A-Fib. He found the best doctor he could and got her treated and cured before her A-Fib could get worse. Her quick treatment may have made her A-Fib much easier to cure.
Long-Term Effects of Living in A-Fib: Aside from feeling miserable, having a reduced quality of life, and suffering emotional stress and anxiety, over time A-Fib can have devastating effects on your heart, brain and other organs.
Don’t Live in A-Fib! Follow Moni and Rani’s example! Don’t listen to doctors and others who may tell you that A-Fib can’t be cured, that the only thing possible is to improve A-Fib symptoms; or that catheter ablation is experimental and not proven; or that you have to take these A-Fib drugs for the rest of your life and you should just learn to live with A-Fib.
Instead, RUN, don’t walk to get a second opinion (and even a third)!
Compared to other heart ailments, A-Fib is relatively easy to fix. You owe it to yourself to get the facts, to look at all your treatment options, not just drugs.
You don’t have to live in A-Fib!
Our newest patient A-Fib story is told by a retired nurse from Arizona. (Coincidently, her husband had A-Fib, too.) Both are now A-Fib free. Her story begins in an all too familiar way.
I Woke at 2 AM with an Urgent Need to Urinate
My first episode started in September 2006 when I woke up at 2 AM with an urgent need to urinate. My heart was beating so hard that I thought it would come out of my chest. My pulse was irregular, I had chest pain and was dizzy. I was anxious and scared. At the emergency room, just before I was scheduled for a cardioversion, to my great relief, I went back into sinus rhythm.
I was discharged with a ‘pill-in-a-pocket’, Flecainide 100 mg, if I got another episode. I thought I would be free from other episodes. But 10 months later I woke up at 1 AM again with an urgent need to urinate. My heart was beating out of my chest and my pulse was over 130 per minute.
But this time I took Flecainide 100 mg and was back in sinus rhythm at 2:15 AM with a pulse of 68.
My cardiologist instructed me to eat salty foods such as chips and nuts while in A-Fib
Why Did I Urinate 10-15 During an A-Fib Episode?
As my A-Fib became more frequent, I wanted to know why I urinated so many times (10-15) during an A-Fib episode. Apparently, when in A-Fib, the “atrial natriuretic peptide hormone” in the atria kicks in and acts as a diuretic to lower the blood pressure and regulate the calcium and salt in the body.
My cardiologist instructed me to eat salty foods such as chips and nuts while in A-Fib and drink plenty of water so as not to get dehydrated. I was also told that my A-Fib episodes were vagal… .
To read more of Lise’ A-Fib story and how she beat her A-Fib for more than three years, go to: Retired Nurse: Over 3 Years A-Fib Free (Husband Had A-Fib, Too).
A-Fib Patient Story #78
By Jeff Patten, Ashby, MA, January 2015
My A-Fib started about fifteen years ago.
That warm September day in 2000, I was tired, had a lot of coffee and was trying to finish a heavy shrub transplanting job. Sweating and breathing heavily, I noticed my heart was not doing what it should.
Alarming! Dehydration?? A couple of hours in ER and it normalized on its own.
After a couple more brief episodes, I decided to get back in better shape – slowly and judiciously! I’d always been active and couldn’t understand why the ole’ ticker was failing me now. They called it lone paroxysmal atrial fibrillation, so there was nothing else wrong.
Flecainide “Pill-In-The-Pocket,” Propafenone, Then CryoBalloon Ablation
The next decade saw no more episodes.
Then, in 2010, my father-in-law died. The recipe of emotional upset, high summer heat, stress (there was a lot of heavy “estate” to handle), and―as they tell me―accumulated age put me back on the A-Fib merry-go-’round.
My A-Fib was very symptomatic with erratic chest pounding, weakness and breathlessness. I took Life easier, and the A-Fib eased―until that autumn’s bout with appendicitis!
My EP put me on flecainide as a pill-in-the-pocket. That seemed to work for a while―until it didn’t
In December 2012, I had a pulmonary vein isolation (PVI). My EP used the newly approved CryoBalloon catheter.
Recovery: A-Fib free, but Pradaxa “Alimentary Torture” and Burning Diarrhea, Switch to Xarelto
After my ablation, I was put on a double dose of the proton pump inhibitor omeprazole (Prilosec), which is done on the theory it will help prevent the very unusual but deadly side effect of PVI known as atrioesophageal fistula by reducing erosive inflammation.
Since my INR numbers on warfarin were hard to control and there was concern about warfarin’s deleterious effect on vascular calcium through its action on vitamin K, I was put on dabigatran (Pradaxa) as an alternative.
Pradaxa comes in a special container to control moisture. The pills must be tossed if not used in four months once opened. They are awkwardly large. They must be taken twice a day. They are formulated with tartaric acid to help absorption. Everyone who takes Pradaxa must contend with all this.
Pradaxa was alimentary torture. Burned on the way down. Burned in my stomach and belly. Burned with diarrhea on the way out.
After six days I called for help and was switched to rivaroxaban (Xarelto). This is a small pill. Tiny, really. No particular moisture issues. No unusual expiration. Once a day. No burning. But the diarrhea continued for more than a couple of months.
Lymphocytic Colitis: From Taking Omeprazole (Prilosec) and/or Pradaxa?
As soon as my ablation was deemed ‘successful’, meaning that I was able to come off my doses of propafenone and Xarelto and omeprazole, I had a colonoscopy to check out the continuing diarrhea.
Diagnosis: lymphocytic colitis. I did a bit of research on this and discovered that very little is conclusively known about this increasing public problem. It is understood that there is an association between this colitis and the use of proton pump inhibitors among other meds such as non-steroidal anti-inflammatories. The diarrhea gradually subsided.
This Pradaxa/omeprazole story is one anecdote. No scientific conclusions can be drawn. I know what I personally conclude about it, however!
Ectopic Beats Turn into Flutter, RF Ablation
The ectopic beats following the ablation got worse.
PACs and PVCs are supposed to be normal and benign. Sometimes mine seemed to string themselves together for a bit. Then in July 2013, they didn’t quit. A heart rate of 130 at rest sent me to the E.R. where I got a diagnosis of atrial flutter, a successful cardioversion, and an appointment for another ablation.
An ablation in August addressed three flutter ‘circuits’. Careful electrical mapping was used this time, and RF-energy was used to break the ‘circuits’. Apparently flutter such as this often follows on the heels of an A-Fib ablation. Not fully understood. Yet.
So far, so good. I’ll let you know if anything more of interest happens.
Pradaxa and Stomach Problems: It’s unfortunately not unusual to experience the intestinal tract problems Jeff had when taking Pradaxa. Pradaxa’s own fact sheet states the common side effects of Pradaxa include:
• Indigestion, Upset Stomach, or Burning
• Stomach Pain
In Pradaxa’s clinical trials, nearly two out of five people (35%) could not tolerate Pradaxa, which is a high rate of adverse reactions. In an earlier post I wrote “Based on the clinical trial data, there is a danger that Pradaxa over time may cause long-term damage to the gastrointestinal system.” (See The New Anticoagulants [NOACs], 2013 Boston Atrial Fibrillation Symposium). This may be what happened to Jeff when he developed lymphocytic colitis, but we can’t say this for sure.
It’s unusual to be put on a double dose of omeprazole (Prilosec).
Switch from Pradaxa to Eliquis or Go Back to Warfarin: I’d recommend to anyone taking Pradaxa to switch to a different anticoagulant or go back to warfarin if it worked for you. Not only is Pradaxa associated with intestinal tract problems, but it’s been associated with people bleeding to death in the ER. There’s no reversal agent or antidote for Pradaxa as there is for warfarin. (See Stop Prescribing or Taking Pradaxa). Eliquis tested better than the other new anticoagulants and is safer.
With the new anticoagulants (NOACs) now available, no one probably should be taking warfarin anymore. Warfarin produces arterial calcification, and also puts patients at increased risk of osteoporosis and bone fractures. (See Stop Taking Warfarin [Coumadin]!!! Switch to Eliquis [Apixaban].)
Flutter after A-Fib ablation: Many EPs include a Flutter ablation along with an A-Fib PVI. It’s relatively easy to do compared to a left atrium PVI and only adds around 10 minutes to the ablation procedure. It involves making an ablation line in the right atrium (Caviotricuspid Isthmus line) either before or after entering the left atrium. But other EPs are reluctant to make any ablation burns in the heart that aren’t medically necessary. If someone isn’t in right atrium flutter, they wouldn’t do a Flutter ablation. (Personally if I had a choice, I’d ask the EP to do a right atrium Flutter ablation as long as they were already ablating inside my heart anyway.)
However, Jeff had three Flutter circuits which probably meant that some of these Flutter circuits did come from the left atrium. Flutter can develop after an A-Fib ablation or be found later after the inflammation of the ablation scarring settles down. That’s why Jeff needed a second ablation which was RF rather than CryoBalloon.
Oct 2015: FDA Aproves Reversal Agent Praxbind® for the Anticoagulant Pradaxa
The FDA granted “accelerated approval” to Praxbind®, a reversal agent (antidote) to Pradaxa®. Praxbind is given intravenously to patients who have uncontrolled bleeding or require emergency surgery.
If you find any errors on this page, email us. Y Last updated: Sunday, July 17, 2016
Atrial Fibrillation patients often search for unbiased information and guidance about medicines and drug therapy treatments. These are answers to the most frequently asked questions by patients and their families. (Click on the question to jump to the answer.)
11. “I am on Coumadin (warfarin) to thin my blood and prevent A-Fib blood clots. Do I now need to avoid foods with Vitamin K which would interfere with the blood thinning effects of Coumadin?” UPDATED
12. “The A-Fib.com web site claims that an A-Fib stroke is often worse than other causes of stroke. Why is that? If a clot causes a stroke, what difference does it make if it comes from A-Fib or other causes? Isn’t the damage the same?“
16. “I have to be on aspirin for stroke prevention. Which is better—the low-dose baby aspirin (81 mg) or a high dose (325 mg)? Should I take the immediate-release (uncoated) or the enteric-coated aspirin?”
17. “I don’t want to be on blood thinners for the rest of my life. I’ve had a successful catheter ablation and am no longer in A-Fib. But my doctor says I need to be on a blood thinner. I’ve been told that, even after a successful catheter ablation, I could still have “silent” A-Fib—A-Fib episodes that I’m not aware of. Is there anything I can do to get off of blood thinners?“
21. “I”ve read about a new anticoagulant, edoxaban, as an alternative to warfarin (Coumadin) for reducing risk of stroke. For A-Fib patients, how does it compare to warfarin? Should I consider edoxaban instead of the other NOACs?”
Last updated: Wednesday, May 25, 2016
2. “Is the “Pill-In-The-Pocket” treatment a cure for A-Fib? When should it be used?”
The “Pill-In-The-Pocket” treatment refers to taking an antiarrhythmic med at the time of an A-Fib attack.
One approach is to take 100 mg of flecainide up to three times at 20 minute intervals to stop or shorten an A-Fib episode.
Another approach is to take Rythmol 300 mg and Inderal 20 mg, wait three hours, then take Inderal 20 mg, wait three hours, then take Rythmol 300 mg and Inderal 20 mg again. (Other meds and dosages are used depending on the needs of the patient).
Another variation of the “Pill-In-The-Pocket” treatment is to take an antiarrhythmic med on a regular basis, then take a higher dose at the time of an A-Fib attack. A-Fib patient, Reg, writes he takes 300 mg of flecainide, and 2 hours later goes back into SR. He normally is on a loading dose of flecainide 100 mg in the morning and 50 mg in the afternoon.
However, not everyone can tolerate antiarrhythmic meds on a regular basis. The “Pill-In-The-Pocket” treatment is an excellent, welcome option for A-Fib patients who feel bad when taking antiarrhythmic meds every day.
(When the author had A-Fib, he never tried the “Pill-In-The-Pocket” treatment. He welcomes comments and corrections to this opinion.)
The “Pill-In-The-Pocket” treatment should probably not be considered a “cure” for A-Fib, but more of a help to get one out of or shorten an A-Fib attack. For more, go to our Treatments page and look for “Pill-in-the-Pocket”. Read about two different approaches in Marilyn Shook’s personal experience story: “Pill-In-The-Pocket” Approaches—Both Turn To Catheter Ablation For A Cure.
In my opinion, the ideal use of an antiarrhythmic med is to take it on a regular basis to keep one from having an A-Fib attack. Taking an antiarrhythmic med only when one has an A-Fib attack is like trying to put out a fire after it has started. From a patient’s perspective, it’s better to keep A-Fib from starting in the first place—to be proactive rather than reactive.
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