In A-Fib 12 Years: Fainting and Dangerous Falls But No Health Insurance, Abusive Husband—Finally Catheter Ablation by Dr. Roy John
Sandy, Boston, MA, March 2014
For the first 40 years of my life, I was a very active, energetic woman. I was a lucky girl with horses in my teens and street racing cars in my twenties. Until my late thirties, I generally worked two or three jobs to make my house payments. I skied the mountains of New Hampshire, ran wooded trails with my two dogs, and regularly attended aerobics classes.
Two Children Late in Life, Traumatic Brain Injury
From 1966 until 1989 I worked full time for many tough bosses. At age 37 my first child was born, and my second was born just after I turned 40. I wanted to stay home and raise my own children, and the only way I could achieve that was to help my husband establish and run his own business. In 1995, I suffered a traumatic brain injury while skiing. After loads of vestibular therapy, I learned to cope with persistent vertigo and dizziness and still assist my husband with his business. However, working for him became increasingly difficult as his unrealistic demands and verbal abuse escalated.
First A-Fib Attack at Age 53—Told It was “Benign”
In 2002, at age 53, I experienced my first episode of paroxysmal A-Fib. It was terrifying and traumatic. I was converted with medicines in the emergency room. For the next year or so, I went to the emergency room every time I had an episode because I was very frightened. Then, on one occasion, an emergency room doctor said to me “you have benign paroxysmal atrial fibrillation.” Since nothing about my A-Fib seemed “benign,” I asked him what he meant by that statement. Astonishingly, he replied “you haven’t died yet.” I was speechless and felt ashamed about my repeated visits to the ER. And I am quite sure that my husband, having heard that, fixed his own opinion regarding my A-Fib which exists to the present day. (Note: when I told my cardiologist about the ER doctor, he wanted to know the name of the doctor to report his inappropriate statements.)
An emergency room doctor said “you have benign paroxysmal atrial fibrillation.” Since nothing about my A-Fib seemed “benign,”, I asked him what he meant…astonishingly, he replied “you haven’t died yet.” I was speechless….
Abusive Husband and No Health Insurance
Having suffered a traumatic brain injury and its after effects, I was accustomed to coping with an injury or medical issue that isn’t readily apparent. Even close family members (like a husband) often think you are okay because you look okay. I wasn’t okay. And with the onset of A-Fib, it became increasingly difficult for me to function and cope with all of the daily responsibilities, raising children and running a business. Reluctantly, I insisted that we hire a full time person to work in our office. Things went downhill from there. My husband began to regularly verbally abuse me and our two children, often waking me in the middle of the night to loudly deliver long angry speeches and criticism about all three of us. If I went into A-Fib, he would accuse me of “faking it.”
During Christmas in 2006 the abuse escalated to physical contact and criminal threatening. I obtained a restraining order, which he violated and was arrested, charged and found guilty. That stopped him from overtly abusing me. It took almost 2 years to get a divorce. He was supposed to provide me with health insurance for 2 years (until June 2010), but he provided the worst coverage he could find, with high deductibles and co-pays, which I could not afford to pay.
In 2008 I was granted a divorce on the grounds of extreme cruelty. It was a relief. Counseling helped me, and a new relationship with a loving, kind man lessened the frequency of my “episodes.”
Metoprolol ER (Toprol XL), then Propafenone (Rythmol) side effects
The “management” of my A-Fib episodes from 2002 until 2007 was limited to taking Toprol XL (or the generic version, Metoprolol ER) 50 mg twice daily. I had never experienced high blood pressure, but was told that this beta-blocker was effective in maintaining sinus rhythm after conversion of atrial fibrillation. (Note: for many years, whenever I told health care providers that I was taking Toprol/Metoprolol, they immediately assumed that it was for high blood pressure.)
In 2007, my cardiologist added Rythmol (propafenone), an antiarrhythmic, and my PCP prescribed Zoloft for situational depression. While on Rythmol, I experienced shortness of breath, my vertigo and dizziness became much worse. And after one episode of fainting, I called my cardiologist and was told to stop taking the drug.
found A-Fib.com—Ablation!? No Way!
I think it was in 2010 that I found Dr. Steve Ryan’s website A-Fib.com. At that time I thought I was doing pretty well managing and coping with my A-Fib, but I wrote him to say “hello” and related my own experience with A-Fib. As I remember, he mentioned that it was great that Toprol/Metoprolol (alone) was a successful tool in my case, but he also sent me some information about ablation.
Well, at that time, I researched ablation and found it scary as hell. Therefore, I completely dismissed it as an option for me.
managing my a-fib ‘warnings’
For most of the years that I had A-Fib (2002 to 2011) I would get a “warning.” I would start to feel a flutter in my chest and throat. Sometimes I felt nauseous. I also would feel like I needed to clear my throat. I learned over the years not to ignore these symptoms. And if it happened at home, I’d immediately drop everything and go lie down. Generally, within 2 to 4 hours, I would convert to normal sinus rhythm. However, if I was in a public place, or out away from my home and could not lie down, fairly soon my symptoms would worsen and I would panic, which only exacerbated the symptoms and the length of the episode. Still, I wanted to manage my A-Fib with medicine.
…I began experiencing episodes of syncope (fainting)…Once, I passed out while pumping gas and hit my head on a concrete barrier next to the gas pump.
A-Fib Symptoms worsen dramatically
Then, in 2012 it was evident to me that my A-Fib was getting worse. During episodes I was experiencing a frightening pounding sensation in my chest, severe dizziness, a feeling like I might choke or throw up and a feeling of a “weight” on my chest. Also, I started to feel as if I was going to pass out. Looking back, I was somewhat in denial and still thinking I could manage.
Devastating FAINTING & HEAD INJURIES CAUSE ANXIETY AND DEPRESSION
In early 2013, my paroxysmal episodes of A-Fib started coming on without much warning, and I began experiencing episodes of syncope (fainting). Once, I was in the shower and it came on so sudden – I knew I was about to pass out. I was covered in soap and shampoo. I dropped to the floor and crawled out of my bathroom to my bed. Another time I passed out while pumping gas and hit my head on a concrete barrier next to the gas pump. I passed out at IKEA in Stoughton, Massachusetts at “checkout,” fell backwards into a metal cart and then onto the concrete floor where I banged my head. I passed out at home while alone and fell down a flight of stairs. I passed out at a friend’s home and fell into a metal object that injured my back.
Gradually during 2013 I became very fearful of going places alone, driving alone and being more than a very few minutes from home. I was constantly trying to “manage” all of the things that appeared to “trigger” my A-Fib, without success. My depression returned, and my episodes seemed to take longer to convert. After conversion, I ached all over and felt unwell for several days. Still, I rejected ablation and thought that I could continue “managing” my symptoms.
Now, looking back, I am quite ashamed and feel pretty stupid about my stubborn behavior regarding my A-Fib, but feel I had to share this information as I am sure I’m not alone. I also think I am pretty lucky to still be alive.
In the ER, Blood Thinners—Doctors Intervene (Screaming At Me!),
On October 30, 2013 I experienced a severe episode of paroxysmal A-Fib. After six hours, a family member took me to the ER. My heart rate was fluctuating up to 205 beats per minute with rapid changes in blood pressure readings. Cardizem was administered immediately, which caused my blood pressure to drop lower than expected, so they started pumping me up with fluids. Also, I received my first dose of a blood thinner – Lovenox – injected into my abdomen in the ER. I was admitted to the cardiac unit. And after 14 hours, I finally converted to normal sinus rhythm. The next day, my cardiologist ordered a nuclear stress test, and I did fine. They did notice a mild mitral valve prolapse, which had not been observed in previous testing.
Even though I did well during the stress test, my cardiologist delivered a stern discussion regarding ablation and adding a blood thinner. He expressed his concerns regarding the length of time – 12 years – that I had been in A-Fib and my worsening episodes. Looking back, I know that my stubborn refusal to change how I was “managing” could have had dire consequences.
On January 30, 2014 I again experienced another severe episode of A-Fib, similar to the one in October of 2013. Once the ER doctor and a cardiologist reviewed my medical records, they literally screamed at me about not being on a blood thinner. The next day, both of them told me that it was time for me to try ablation. I truly felt as though I had “reached bottom.” And after I was discharged, I went home and cried.
Reading stories of hope on A-Fib.com
The next day I thought about the a-fib.com website and went to it and read many personal stories about A-Fib and ablation procedures. I am very grateful to those who shared their information. It made me realize that if I survived being a teenager, riding horses, driving fast cars, having children late in life, living in an abusive marriage for years……..then, it was about time I gave ablation a try.
HEALTH INSURANCE AT LAST! ready for ablation
At the end of 2013, at age 65, I became Medicare eligible (Parts A and B) and signed up for a Medicare Supplement (Medigap), which was a relief because I highly suspected that I would require more medical attention for my A-Fib.
I made an appointment with my cardiologist. And he referred me to Dr. Roy John, MD, who is an electrophysiologist at Brigham and Women’s Hospital in Boston, MA. I was ready to try ablation!
Dr. John advised me that he would be using a CryoBalloon catheter ablation system – The Arctic Front® Cardiac CryoAblation Catheter System – and asked me if I would participate in a study, which after the ablation I found out it was entitled “Sustained Treatment of Paroxysmal Atrial Fibrillation Post-Approval Study (Stop AF PAS).” He also prescribed Xarelto (a blood thinner) and ordered a transthoracic echo (TTE) and a cardiac MRI of my heart.
Although I agreed to cryo ablation and participation in the study, after returning home I was hesitant, thinking that the procedure was something new. I was happy to find Dr. Ryan’s page on A-Fib.com entitled “A Cryo Ablation Primer,” because it was informative and related that the first cryo ablation was performed in the United States in 2005.
Cryoballoon ablation at Brigham and Women’s Hospital
On February 24, 2014 (the day of my catheter CryoBalloon ablation) I could not help feeling fearful and I cried a lot that early morning. I arrived at Brigham and Women’s at 6:00 a.m. Things started happening pretty quickly. And once I was in the electrophysiology lab, I did not have much time to think about being scared. I was amazed at how quickly and efficiently everyone handled me and their respective responsibilities, from taking my belongings and getting me comfortable, to drawing blood and inserting an IV in my hand, to reading all the releases, meeting with the anesthesiologist and Dr. John and his assistants in the EP lab, etc.
Over the course of my life, I’ve been in an operating room about 7 times. But when they wheeled me into the EP Lab at Brigham and Women’s, I was amazed. It was very impressive. I was told they would be observing my heart throughout the procedure on the gigantic flat screen, and they would constantly monitor my heart via the table I was laying on, the many monitoring devices attached to my body, and the transesophageal echocardiography – TEE (which is like a camera that was inserted in my esophagus – after I was asleep and just before the catheterization and ablation).
While many people might not want to know all the specific details and medical procedural terms, I found it interesting. And it took my mind off of my fears.
When I awoke from the procedure around noon time, I was congested, groggy, and achy all over. I believe that I was under anesthesia for about 4 hours. Afterwards I had to lay perfectly still for another 4 hours to allow the incision sites in my groin to heal. By 4:00 p.m. I was in a private room in the cardiac unit, hungry and ordering lunch.
I was very well-cared for and have nothing but good things to say about Dr. Roy John and everyone who treated me at Brigham and Women’s in Boston. Everyone that spoke to me, touched me, treated me, were wonderful. From the moment I arrived until the moment I left, I felt safe. And so many times the Brigham and Women’s employees made me laugh so hard.
Cardiology and Electrophysiology at Brigham and Women’s is located in the Shapiro Building, which was constructed and opened in 2008. It is a beautiful, clean facility with a parking garage right next door. My Garmin GPS took us right there. (It’s pretty easy mid-day, but a nightmare in traffic during “rush hours” if you are coming from NH or south of Boston). I was in a large private room and bathroom with shower. My room was very surprisingly quiet overnight. (All my previous overnight hospitalizations in cardiac unit(s) were horribly noisy and not conducive to sleeping.) All the rooms in the Shapiro building of Brigham and Women’s are private rooms. There were two televisions — one at my bed and one for guests. Every room has a large sofa and chairs and daybeds to accommodate family members’ overnight stays.
A-Fib Free with a “quiet” heart
It is now ten days after the procedure. I haven’t had any A-Fib episodes that I know of. I am feeling somewhat “funny” at times. Even though I had paroxysmal A-Fib for 12 years, I think my heart was “aflutter” a lot. It feels so “quiet” now. It is quite odd, after 12 years of feeling my heart doing strange things.
This past week, I’ve had some blurred vision, which came on three days in a row about the same time each day and lasted for about 20 minutes. Dr. John thought it was “ocular migraines.” His PA said “it’s not unusual because we popped a hole in your septum.” My PCP wasn’t satisfied with that explanation, so she sent me for an eye exam and a bilateral ultrasound of my carotid arteries to be sure that I did not have blood clots. Everything was okay.
Recovery from the procedure was pretty quick. I require a lot of sleep, but that is not unusual for me. After my traumatic brain injury in 1995, the persistent vertigo and dizziness causes fatigue.
One thing I haven’t mentioned is that my family and the doctors and nurses (during my hospitalization in January, 2014) all raised concerns about sleep apnea, which can cause A-Fib. My PCP has scheduled me for a sleep study.
Regarding the ablation, I am optimistic. But I was also told not to be disappointed if I did experience episodes of A-Fib. Also, since I have had A-Fib for so many years, I might require an additional ablation. I would not hesitate to have the CryoBalloon ablation procedure again.
I will keep Dr. Steve Ryan updated regarding my progress.
Regarding the abusive husband: Beware of abuse that very gradually escalates over years because you become “conditioned” to it. It damages your self-esteem, demeans your growth, weakens your resolve and demands your silence. The abuser is a bully who wants power and control. Standing up to a bully is frightening and can be dangerous. Do not minimize the abuser’s actions. Today thankfully, law enforcement and the Courts are more aware and prepared to handle these situations, if you ask for their help.
Everyone has their own path in life. I let the abuse go on way too long. It damaged me and my sons, but we learned, got counseling and have moved on. If you’re living with an abusive husband or boyfriend, get counseling and move to a life free of abuse.
Regarding my A-Fib and Ablation: I wish I had been able to have the ablation performed back in 2002 or shortly after my first episode of atrial fibrillation. Don’t wait!! Get it done as soon as an electrophysiologist will do it for you. Quality of life is so important. Do not risk a stroke because you are afraid. The procedure was much, much easier than I ever imagined.
Sandy from Boston
Ten days isn’t enough time to determine if Sandy’s procedure was a complete success. The normal “blanking” period is three months. But the fact that Sandy now has a “quiet” heart and is A-Fib free is a great sign. Sandy now knows (and enjoys) what it feels like to be A-Fib free. Even if A-Fib returns, she knows she can lick it.
A special thanks to Sandy for sharing the ordeal she went through with her abusive husband. (I get so angry reading stories like Sandy’s. Is there a bad husband or bad boyfriend gene?)
It’s unfortunately not unusual for your friends, family, co-workers or even (and especially) your doctor to not understand what you are going through. (Wouldn’t it be neat if we could give them a ten-second bout of A-Fib so they’d feel what it’s like?) Don’t hesitate to sit down with them and tell them what A-Fib is like, how it makes you feel. Most will understand to some extent. And use me and the A-Fib Support Volunteer. Sometimes it helps to talk with someone who’s had A-Fib and knows what it’s like.
Sandy’s A-Fib symptoms were terrible, and they were compounded by the fact she couldn’t get insurance because of her pre-existing condition. While not having health insurance and not being able to have a catheter ablation may soon be a thing of the past in the US, the editor knows many people overseas who are forced to live with similar symptoms as Sandy. It’s a shame, because A-Fib is so easily cured.
It’s a miracle that Sandy lasted 12 years in Paroxysmal A-Fib without going into permanent (persistent) A-Fib. Many people go chronic in one year. And Sandy may have been rolling the dice by not taking anticoagulants. She could have had an A-Fib stroke. The decision to take or not take anticoagulants is one of the most difficult a doctor and patient have to make, and may change for example as one gets older.
As Sandy’s family and doctors urged, everyone with A-Fib should be tested for sleep apnea. Sleep apnea is very often a trigger or cause of A-Fib, probably because of the strain and labored breathing it puts on the Pulmonary Veins where most of A-Fib comes from. Ask your significant other if you snore or have labored breathing while you sleep. The remedy is usually simple and works very well.