My Heart Story

Hello. My name is Angela. I'm a wife of 21 years, mother of two beautiful young adults, military veteran, unemployed history teacher, animal lover, cardmaker and crafter. On December 21, 2014, at age 46, I had Diastolic Heart Failure and within a couple of months was diagnosed with a non-curable genetic heart disease called Apical Hypertrophic Cardiomyopathy (AHCM)

Since being diagnosed I've learned that approximately 1 in 500 people have Hypertrophic Cardiomyopathy (HCM). Of those with HCM a smaller group have the variant called, Apical Hypertrophic Cardiomyopathy (AHCM). AHCM is often viewed as a benign form of HCM, but of those with AHCM, some of us develop significant cardiovascular complications such as heart failureheart block, breathlessness, and/or arrhythmias that can lead to blood clots, sudden cardiac arrest and a host of other things. 

"A Rare Bird in a Rare Flock" is how my 
cardiologist referred to me as he was explaining my diagnosis and what the HCM specialist said, so it seemed a fitting name for the place where I share my diagnoses, experiences, issues, procedures, treatments and hope.

Over the years I've been diagnosed with, Diastolic Heart Failure, Ventricular Tachycardia, Atrial Fibrillation, Atrial Tachycardia, Supraventricular Tachycardia, Syncope, a Right Bundle Branch Block, Left Ventricular Hypertrophy and annoying PVCs and PACs.

I have a Subcutaneous ICD to protect me from dying of cardiac arrest and take medications to slow my heart so it has a longer chance to fill with blood and to help keep arrhythmia at bay. In the past I have had a Heart Ablation, Cardiac Catheterization and an implanted monitor. 

This blog is to share my story and information that I've gathered for those suffering heart disease with an emphasis on AHCM, but even more importantly it's a place to tell you not to give up. 

Due to the severe thickness of my left ventricle, I have a condition called Left Ventricular Hypertrophy (LVH), I'm currently in the more advanced stages of my disease where my chamber has become stiff and doesn't fill with an adequate amount of blood (a diagram and a photo of my own heart has been included below). I suffer from fatigue, breathlessness even upon rest and have an arrhythmia from time to time each day, but thanks to my medication they are usually very short-lived. Unfortunately since the cells of my left chamber have mutated there is nothing I can do to reverse it, but my hope is to at least improve the way I feel through rehabilitation and determination. I'm also hopeful that the progression of my disease slows down. My left ventricle became very thick, very fast and from my understanding it's what is referred to as "Late On-set", but this has not been confirmed with my doctor as of yet.

I recently read this article 
(Late-Onset Hypertrophic Cardiomyopathy Caused by a Mutation in the Cardiac Troponin T Gene) and will be asking the Hypertrophic Cardiomyopathy Specialist more about it in upcoming appointment. 

I've learned with HCM/AHCM that there are common threads between people with the disease, but everyone is different and is affected differently. So there may be a handful of people that go through life perfectly fine and never know they have the disease while others end up with a heart transplant, die of cardiac arrest, or remain very symptomatic for years and die of heart failure.  

The red area with the lines through it in the picture below shows the spade like formation of my left ventricle with the extra thickness at the apex. Although, unlike the picture, the side walls of my left ventricle are also severely thick (concentric) with even more thickening at the apex or tip of the heart. This leaves less room for blood and makes it harder for the heart to pump effectively. 

This picture is of Apical Hypertrophic Cardiomyopathy taken from the Booklet called Inherited Heart Conditions: Hypertrophic Cardiomyopathy, The booklet has been developed from the original version inspired by the founder of the Cardiomyopathy Association – Carolyn Biro. Published by the British Heart Foundation of whom I am in no way associated. I'm just a heart patient. 

Update: I have my own heart to show with a comparison to a normal heart.

Over the years I have been diagnosed with Sleep Apnea which can be the cause of a host of things such as heart disease, stroke and arrhythmia. To further complicate matters I have IBS which can cause dehydration and malabsorption of nutrients in the body. I'm in a constant state of wondering what-caused-what.

Since having heart failure in December 2014 and again in February 2015 I've been diagnosed with Hypothyroidism and Type II Diabetes. Weight gain, hair loss, fighting dehydration from the IBS while also fighting water retention to avoid heart failure have been a challenge, but my BIGGEST challenges have been dietary changes, habit breaking, feeling breathless (very low energy) and trying to keep a positive outlook.

Nothing I do can be the same, from everything I eat and drink to how I go about trying to accomplish daily tasks that I once took for granted. I have felt very overwhelmed as I've tried to figure out what I should and should not eat. Sometimes it feels like I have no food choices at all and that is something I will be looking into to see what works best for me.  

Previous Heart History

All of my previous experiences with arrhythmia as a teenager were very short lived, lasting only seconds. I had no idea that I had a problem. In fact I never told anyone about it, because I didn't think it was anything to worry about. I was an all-around athlete in incredible shape. How could I have a heart problem at 16? 

I was about 23 years old and in the Navy before the arrhythmia would last longer, about two minutes, and I just happened to be on the beach with a friend. She listened to my pulse and tried counting it, but it was too fast. She guesstimated that it was in the 200s. When I went to my doctor about it, the episode was long over and the doctor listened to my beautifully beating heart and said nothing was wrong with me. That was that. 
On my birthday at age 26 of which I was 8 months pregnant I had my first experience with an arrhythmia 
not ending on its own and doctors put a name to it, Supraventricular Tachycardia (SVT) . The SVT lasted 4 hours before I got medical help and by the time I did get help I could barely feel my arms and legs and my face was white as a ghost. From that point on I visited the emergency room time and time again with SVT until I gave birth to my child. 

When the same occurred during my second pregnancy I realized that for some reason my heart could not handle the extra blood volume, but I was never given an explanation by any of my doctors. So as a busy mom of a 2 year old and a newborn I did what moms do. I put the experiences behind me and moved forward to take care of my babies. 

Below is a heart strip from an episode of Supraventricular Tachycardia I had around that time. 

By 2004 I was diagnosed with Atrial Fibrillation and I had passed out from an arrhythmia that went undiagnosed.

In 2006 I 
underwent catheter ablation to rid me of Supraventricular Tachycardia and Atrial Fibrillation. The ablation appeared to go well, but by 2009 I was diagnosed with a Right Bundle Branch Block and Atrial Tachycardia (A-Tach). 

My cardiologist suspected that the A-Tach may be what had caused me to pass out a few years before and was causing me to feel dizzy and lightheaded. I was also being bothered by nuisance Premature Atrial and Ventricular Contractions. So I began medication for the first time. 

Added 2009 diagnoses: Long QT and Sleep Apnea.

From 2009 through 2012 my heart arrhythmias and issues caused by them seemed to come and go in phases. By April 2012, having moved to a new area I sought out a cardiologist because I was in a bad phase. Having passed out for a second time my new cardiologist had me wear a Holter monitor that revealed bouts of Ventricular Tachycardia (V-Tach).

Passing out with V-Tach is not a good sign  and is a preface to cardiac arrest so 
I was admitted to the hospital where electrophysiology studies were done. The electrophysiologist was unable to recreate the V-Tach so a monitor was implanted in my chest to catch it.

My monitor was removed in February 2015 so the cardiac MRI could be preformed without it blocking my heart.

As I was preparing to be discharged from the hospital I had another Ventricular Tachycardia attack which made me feel faint and we were fortunate to catch it, but it was not sustained long enough for my insurance company to cover the cost of a defibrillator (ICD) so I was placed on new heart medication and released. 

The new heart medication worked great and I did quite well until my recent heart failure December 21, 2014. I had thought that the building up of not being able to catch my breath sometimes was only asthma, but the swelling I began to experience in my abdomen, ankles and feet about 9 months prior to my heart failure was the beginning of a downward spiral of which I had no clue was leading to heart failure. In fact my PCP didn't recognize the signs of my heart failure and sent me home with just compression stockings.

If you are experiencing swelling unlike swelling you've ever experienced before and have recently noticed you run out of breath very easily or it's taking you longer to catch your breath make sure you see your doctor and make sure to emphasize that you're experiencing those two things together and anything else you may be feeling. Better to rule it out than to overlook it altogether. 

February 2015, I was diagnosed with Apical Hypertrophic Cardiomyopathy after having an electrocardiogram that led to an MRI. The electrocardiogram revealed thickness of my left ventricle, the MRI revealed exactly what was going on though much more detail. A special MRI had to be preformed with a heart program. Any old MRI will not show details like the one I had did. So if you are not in a big city, chances are you will be sent to one to have this special MRI done.

Three days ago, March 30th 2015, I received an S-ICD to protect me from cardiac arrest.You can find out more information about the ICD I recieved and how it's going since surgery at 

Subcutaneous ICD: Looking forward to better days

I hope that you will find this site a place to learn, and share your own experiences with HCM, AHCM, LVH, Heart Failure, etc.