How to Cure Palpitations, PVC’s, PAC’s and Missed Heart Beats

There’s no good way to describe the feeling other than a thump in your chest like you just had a heart hiccup. Many people describe the feeling in many ways. If you have ever experienced them they can be scary at first, a random skip of your normal heart rhythm is not something anyone will enjoy. If they come in pairs, become every other beat or last for hours they can be downright frightening. There are periods that I have experienced all of the above mentioned events and even worse.

With my heart condition I have always had an occasional experience but as I grow older they are becoming more frequent. They have at times made me so nervous that I have had to go to the emergency room, just to be reassured that what I was experiencing is non-life threatening. To be honest, not totally reassuring at times.

So how does one cure these dreaded events or prevent them from happening? I have been told by experts in their fields, Doctors that specialize in the electrophysiology of the heart and travel to other countries to teach doctors in the same field at world renowned hospitals, that there is a cure but at a very high expense and none that any insurance or doctor would perform to completely get rid of those pesky missed beats. It would entail a surgically performed procedure, through a catheter, to burn the nodes in your heart that create your normal rhythm and replace the signals with a two wire pacemaker. Not something to be taken lightly or even reversible. That patient would now be dependent on the pacemaker to beat his or her heart for the rest of their lives. No person would want to put themselves in that position, voluntarily, I hope.

Missed beats, to describe benign rhythms, considered not to be a threat to anyone’s life is not curable. Are they annoying? Yes. Are they difficult to live with? Yes. Can they make you feel ill? Yes. Will they kill you? NO!

There is no magic pill or ways to hold your breath or stand on your head and count backwards from 100, you get my drift. Right? Please don’t buy any herbal supplements or try some concoction you find on the internet. But wait, it’s not all gloom-or-doom for us who suffer from theses annoying buddies of ours. Before you get too discouraged, there are ways to limit them or make them less intense.

With over 40 years behind me I can tell you that the number one trigger for me is stress. And it doesn’t even have to be the kind of stress where you feel like you want to pull your freaking hair out. It could be something as simple as trying to make a major decision, something weighing on your mind or just being overwhelmed by a situation. Most “normal” people without a heart condition that experience PVC’s (Pre Ventricular Contractions), experience them when the “fight or flight” syndrome kicks in. But for us who are more sensitive to our adrenaline, we can experience them through many triggers.

The hardest thing to do is get rid of them once they start, so prevention is the best medicine. Meditation, Yoga, Medication for panic or anxiety disorders, getting plenty of sleep and fluids (water). No, Beer and wine don’t count. Staying healthy and exercising to your ability. I have found at times when they are the worst if I just get up and take a walk or do something that raises my heart rate above the resting rate that they will diminish. Not a guarantee but it works a lot of the times for me. Stay away from stimulants such as coffee and nicotine, two big triggers. If you feel as though you need coffee in the morning, try drinking some water first and switch to half-caffeinated. For some, I have learned, an over abundance of sugar can be a trigger so eat healthy.

The most important message I would like to convey with this post is if PVC’s or the feeling of missed beats makes you uncomfortable please make an appointment to see your doctor or visit an emergency room. Be certain that you’re not missing the identification of an abnormal rhythm that could possibly be life threatening or treatable.

There are medications out there that can be prescribed to lessen the feeling in your chest, like blood pressure medicine. But with any medication comes side affects. I would suggest not going down that rabbit hole unless your Doc feels it’s medically necessary. Like I said before, they don’t make a pill to cure PVC’s. It’s all up to you, in the long run if you are not doing some of these things already you will be healthier for starting.

 

What’s Wrong with You?

   This is the question I am asked the most when people notice my chest scars or find out about my physical limitations, in a polite manner of course. And I will explain here in simple terms so all can fully understand. I had a surgical “correction” of the congenital heart defect, “Transposition of the Great Arteries.” TGA for short. That’s what they call it, more importantly it’s called the Mustard Procedure (Thanks to Dr William Mustard). It’s overwhelming to say let alone live with. Basically I was born with the two main arteries switched on top of my heart. So, in affect, my oxygenated blood went from my heart to my lungs and back to my heart while the unoxygenated blood circulated throughout my body. For that reason, I was born a blue baby and able to live outside my mother for a while due to the fact that when you are in vitro there is this hole between your heart chambers that allow your blood to flow unobstructed. Normally a short time after delivery this hole begins to close. But for me that closure would mean certain death. The first thing they had to do was to go up my femoral artery and surgically keep that hole open in order for my blood to comingle. Not the best solution but hey, from what I understand, oxygen is good for the brain.

This allowed me to be able to go home and become a little bigger and stronger before my open heart surgery. Seems the survival rate was much better if my body had time to develope a bit before some major alterations were made.

I had my open heart (Mustard) done in March of 1977, I was thirteen months old. This procedure had been developed in 1963 in the great country of Canada and eventually become the norm at the time, replacing the more complicated Senning procedure. With the Mustard, the surgeon creates a baffle from artificial material to redirect the flow of the oxygenated blood allowing my body to receive the nice clean blood from my lungs. This involves the opening of my heart to build the baffle which later in life will cause scar tissue to develop and in turn result in rhythm issues. More on that fun subject later.

So now that the baffle is done and I am put all back together there is still one major problem. My right side of my heart is doing the job normally done by the left side and vise versa. There inlies the problem for me later in life. Naturally and anatomically the heart was not designed for this. The side that had it easy from mother nature, circulating blood to the the lungs and back to the heart, is now forced to take on the burden of pumping the blood throughout my entire body. You see, a much different job. And as I get older the weaker it has become. Tired, worn out, exhausted, sick of working so hard, I guess would be a good description. That my friends is heart failure. But not your normal heart failure, nope it can’t be that cut and dry. You see the medicine developed for heart failure is designed for people with heart failure of the correct side of the heart that normally does the heavy lifting and from what i am told it is actually a different type of muscle. Who knew?

The initial outcome of my surgery was great. I grew real fast thanks to the good source of oxygen rich blood and I began to meet all the milestones of a “normal” baby. I was left with no permanent brain damage and no complications. I was lucky in the sense that TGA was the only defect I was born with because from what I understand some of us with TGA are also born with other heart abnormalities.

My childhood was, for the most part, normal. Besides the yearly visits to Philadelphia and wearing that damn holter monitor (24 hr. EKG recording device) that was the size of a boom box. Luckily my parents let me stay home from school to avoid the embarrassment and all the questions that would surely come. Only as I got into my early teens did the aesthetic part really start to bother me. I had this big scar on my chest which was embarrassing to me. And I started to have self esteem issues, as if teenage years aren’t hard enough to deal with. In my high school we were committed to taking swimming classes in order to graduate, that was a huge obstacle for me mentally. Also I had a slight lump on my chest from the year after my surgery. I had grown so fast that my chest plate at my sternum had buckled a bit. This was a major contention for me.

I would say I felt ok throughout my teen years and into my late twenties. At about the age of thirty did I notice a change in my abilities in my stamina. Mowing the grass in really hot weather and my performance in Kickboxing/MMA classes began to diminish. I knew the day would eventually come where I would start to have some issues, it had arrived. Not the greatest feeling in the world.

That’s when I began my research for a doctor or center that specialized in adults born with CHD and I found Penn University in collaboration with CHOP had such a program.

I had my consultation and all the test done. I was ok from a medical standpoint for someone with my condition and it was expected that my stamina would slowly begin to diminish over time but there was no answer as to how fast that would happen.

After the death of my parents and some personal stressful life events I began to feel worse. But, I pushed on and continued my visits to Philly.

I found out I needed a pacemaker due to my heart rate being in the toilet at night (27 bpm). I got that placed and what a blow to my moral. I viewed this as the beginning of the end, something I had feared and dreaded my entire life. But I needed it or I would wind up with a clot or stroke.

Then came the scariest moment so far, my heart wasn’t beating right and i could not stand without feeling like I was going to black out. I was taken to the hospital with a heart rate of 130 bpm. Once there and evaluated, they wanted to give me a drug to temporarily stop my heart to reset it to my normal rhythm. Umm, ok. The doctors told me there was a one percent chance it would not work and it would actually make my heart rate higher. Can you guess who belongs to the one percent group? Right! After the drug was injected I felt like I was going down a really steep roller coaster and I began to get tunnel vision. I remember them telling me to breath, all 10 of them packed in my emergency room with the defibrillator. Then my heart started back up and up and up it went. All the way to 230 bpm. It slowly came down over 5 minutes and stopped right back at 130. I was pissed. All that for what. I was admitted and given a medicine drip and overnight it broke my rhythm.

From that day forward I would have little episodes and constant PVC’s(skipped beats). I had a monitor hooked up that was through a cell phone so they could monitor me 24/7. My doctor called within a few days to let me know I was having periods of Atrial flutter. After consultation with an electrophysiologist it was determined I would need a cardiac ablation. The Atrial flutter was caused by all that scar tissue I had mentioned earlier. I didn’t hesitate because by this time I was having a hard time walking through the back yard or doing even the simplest things.

I had the ablation done almost two years ago from now and I have had not had any major episodes to date. I still have my PVC’s and take a ton of medication but I feel better than I did at that time. I’m tired all the time and my ejection fraction is in the toilet but it could be worse, it could be much worse. I am told that if my ejection fraction gets lower I will begin to be evaluated for a heart transplant. It is in my future but we just don’t know when, there’s no way to predict this.

Until then I live in the NOW, not yesterday, not tomorrow. Today is what I live for and enjoy.

I was born with a heart defect, so are 1 in 100 babies. I’m pretty sure that makes me more normal than I thought growing up. Please share my stories so others out there can feel normal too. 

My Mom was a Beautiful Person

My mom was a beautiful person inside and out. When she was young, she was skinny with long brown hair and her smile, wow, it was so beautiful. in fact I don’t recall ever seeing a photo of her not showing off her smile. Because when she did there was a glow about her. It comforted me when I was young, as far back as I can remember. Darlene was her name to others but it was mom for me and with that came a special blessing I would only realize later in life. She had one simple goal for us growing up and it has become a motto of mine; Be happy no matter what you do or who you are. When I would ask her opinion of something, her first question always would be, “will it make you happy?”

Now that I’m older and she is gone I often wonder where she got that optimism from. Was it from being sick when she was young with cancer and surviving? Was it something instilled in her as a young woman from a family member? Or was it the fact that near the same time as battling cancer she was faced with a miscarriage and only a year later to have her second son born with a congenital heart defect. All of this by the age of about 20. What this beautiful soul went through, only to be handed challenge after challenge, I can only appreciate it fully now that I am older with my own family and dealing with my own obstacles.


Sadly she would continue to be tested, and tested with a vengeance, with a husband that loved her but loved work and alcohol just a bit more. She would endure cervical cancer and survive. Survive open heart surgery for triple bypass and a mitral valve replacement. And finally while caring for her dying husband and watching a strong man, the love of her life, wither from lung cancer she found out her own fate. It was too much for her to fight the last time. She had found out about ⅔ of the way through my father’s fight that she had pancreatic cancer . She was gone about eight weeks after my father’s passing. Both a young 53 years of age.


But this isn’t a story about death, it’s a story of strength and resilience. The question is how does one person endure so much pain, yet at the same time give so much love and inspiration, support and comfort and ask nothing in return? That’s right, besides the little grievances we hear growing up like; put your laundry away, clean up your room or do the dishes. I heard crickets from my mom. Never complaining, never. It was always other people first, their needs before her’s or somehow their priorities were more important. She was known as the “glue” of the family. Her coming from a large family of 7 siblings and my father of 5. Any event or Holiday for the most part was put on her shoulders but believe me it was her that placed it there. What made this woman tick i often now wonder?


That’s what made my mom great. She was the best person to raise me given the condition I was born with. She was an awesome “Heart Mom” before there was even that phrase. She wasn’t here to see me start to have major complications. She missed my first pacemaker, my first ablation, my first cardioversion and my first cardiac MRI. She missed when I was first diagnosed with heart failure. She missed it! And I’m glad she did! She had dealt with enough and left this world knowing I was ok and that she did a great job! She taught me how to handle it on my own and much, much more. That’s what made her a great “heart mom.”


Mom’s are the supportive backbone to any child born with CHD. We need encouragement, positive energy, good thoughts, lots of love and affection. We get that from our moms. Don’t get me wrong, I am sure there are great dads out there that are raising or being a full part of their child’s life with CHD. And I would love to hear from them as well. But for now this it about the relentless, untiring and unwavering moms out there caring for their babies no matter how old they are. My mom was awesome and I am sure if you are reading this you or someone you know is too!! So thanks to all of you from all of us!

This post was inspired by an article I read written by an awesome heart mom, you can read her story here: Happyheartsforabit.com

Why am I Here?

My mission is to reach as many people with my story to inspire, educate, and motivate. The more people who know the struggles and issues of survivors of being born with a congenital heart defect (CHD) the better our futures will be. Also to promote our mission is to guarantee the future will be brighter for those to come. 1% of babies born will have some type of CHD. That’s 1 out 100! I know it’s simple math but when you read it and say it, WOW! Those statistics almost guarantee that you or someone you know is affected directly or indirectly by CHD. The most important thing, in my opinion is that it be viewed as what it is, a defect. It’s not a disease, it can not be cured and it does not go away. This simple fact is what makes those with CHD so challenging at times.

It’s not all gloom and doom mind you. There are and have been advancements everyday in the treatment of CHD. My goal is to continue to push the advancement of proactive patients and families to seek the best possible care. Also, my personal belief is that not one person should lack proper treatment due to financial constraints. There are treatment centers and doctors out there that specialize in Adults with CHD. This may seem like a prehistoric statement but there are people out there that still see a regular cardiologist or no cardiologist at all since they became 18. The proper information has to reach them, it’s very important.

My wife and I have rented our house out and bought an old RV to travel the county. We will be raising money and spreading the word. This blog will be dedicated to telling my story and the story of others. My health is poor but my spirits are high along with my hopes. Please don’t hesitate to reach out to me, just to say hello, introduce yourself and tell me how CHD has affected you.

Social Security Dissability (SSD) and CHD

Social Security Disability is a dirty word. Don’t say it or you might be taken as a driffter, freeloader, or even worse, someone “living off the sytem”. The stigma associated with SSD is astounding. Propelled by all the negative stories reported by the media, people have become conditioned to think nothing less of someone who collects money from the “system”. 

When someone ask, “what do you do for a living?”, I swallow hard and try to gauge what they are going to think of me if I tell them I’m on SSD. I think to myself how do I explain that I look normal, talk normal, walk normal and even yes, do normal things. But I feel sick or horrible some days and it’s so hard to act normal. Because that’s what it’s like most days or a least part of most days, an act. 

So I begin the explainaton with the facinating twenty minute synapsis of my forty one years on earth and how I became who I am and where I’m at in life. Thrilling right? Wrong! Because when I’m finnished explaining in detail how I was born with a heart defect, had open heart surgery, started working at fourteen, paid into “the system” untill I stopped working because I could no longer predict how I was going to feel, had multiple proceedures and test, have heart failure, have a pacemaker or how some days I’m only able to last a few hours without needing to lay down and nap or put my feet up. After that, the questions come. Then and only then do I get the occasional, “Oh wow, well you definatly deserve it.”

I don’t mind sharring my story or explaining in detail what Transposition of the Great Arteries is or the Mustard Proceedure and how it saved my life. That is the part I don’t mind. The part that makes me upset is this notion that because I’m on disability I’m thought to have this “free ride” or somehow be financialy stable thanks to good old Uncle Sam. This is far from the truth. 

Appying for Dissability was one of the most difficult decissions I had to make. It was humbling, humiliating and down right degrading. The process took almost a year and a half with no income to speak of. We asked family and close friends for help, went on food stamps and sold everything we had of value except for one car and our house. There is nothing glamorous about SSD, trust me. I would much rather be back at working 12 hour days and just having the weekends off. It was at least satifying and comforting to feel well enough to provide for my family. There comes a certain amount of pride along with working for a living. I would give anything to have a normal heart but it is what it is, right?

Back to that stigmatism I first brought up. It’s hard to not think what people are going to initially think about you, that’s human nature. It’s natural to feel diminished by getting a hand out. But that’s not what it is. Hell, It barely allows you to survive. And Damn it, in most cases you paid into the “system” and if you didn’t well that’s why it’s called SOCIAL Security. SSD is an inssurance for all of us, including the wealthy. It’s a social system put in place so those that need it are able to live and recieve medical care, supported by those who have worked including yourself if you were furtunate enough. 

So to those that don’t recieve SSD and are perfectly healthy I say good for you, I’m happy that you have been blessed. Please be thoughtfull to those of us that have not been, we really do need it. Don’t let the few negative stories you see or read about SSD eschue your veiw. Most importantly it is not an “entitlement” program. I sure the hell don’t feel entitiled to recieve it. In fact I wish with all my heart that I didn’t need it.