I feel like my history with ARVD started before I was ever diagnosed.

My dad has had ARVD ever since I can remember. He almost died when I was three. He went outside doing yard work for a large portion of his day. He came inside to shower, turned on the water and passed out. He went into cardiac arrest and it was a miracle he was saved. He told me about going towards the white light, feeling at peace until he heard the doctors calling his name. “Bruce, come back to us. Bruce, stay with us.” And then he woke up.

This is what I knew about ARVD: I knew that when he went into V-Tac it was bad news. I knew that tachycardia meant his heart was beating way too fast and that IF it didn’t get fixed he might die.

I knew he had a defibrillator (ICD) and several ablations (see Treatment for ARVD) to try to correct the damage to his heart. The ablations did not work and his heart was slowly getting worse. I remember the first time he “received treatment” from his ICD during a basketball game where he fell to his knees, thinking he’d been struck by lightning. It was terrible and horrifying to see someone you love drop to their knees clutching their chest. He was fine after a few minutes of recuperation, but that image will be in my mind forever.

Recognizing the warning sign:

Cut to 18 years later – I am 21 years old hanging up my laundry on a normal Sunday night. I’m feeling nervous; my heart feels like it is racing. I take my pulse and find out my heart really IS racing – about 100 beats per minute. And skipping beats – I count them. Six missed beats. I count again over several minutes. Seeing as that couldn’t be good, I decide to go to the emergency room.

By the time I actually saw a doctor, my heart was beating normally again. I was hooked up to a heart monitor and everything was as it should be. The ER doctor told me that the palpitations and increased heart rate is a product of the half can of soda I drank two days before. He tells me caffeine will do that to a person. He completely dismissed me without doing an EKG, telling me that I’m too young to have any serious problems.

My heart continued to skip beats and race for no reason over the next few days. I went to my GP and had her take my pulse after running up their staircase a few times. She immediately referred me to a cardiologist, Dr. Johnson, noting that no one’s heart should react to such minimal exercise.

Lindsey’s diagnosis:

Dr. Johnson set me up with several tests. First I got an EKG (electrocardiogram), which comes back abnormal. I was then fitted with a Holter monitor, a small EKG-like device that records my heart’s activity for 24 hours non-stop. Getting the results to that test changed my life. I looked at the letter of results they mailed to me – 3 instances of tachycardia lasting a few seconds each – and burst into tears. I find out that each occurred while I was exercising on an elliptical machine, very common with ARVD. I learned later that the pressure I felt in my throat while exercising was associated with the 250 bpm heart rate.

That news was devastating. Tachycardia is the one word that really brought it home to me. I have the same disease that almost killed my daddy. Will I die too? Will I die early because of a mutation of my heart? At 21 years old, I was unprepared to handle the thought of death.

My next appointment with Dr. Johnson was another shock. He wanted to put in an ICD immediately. He suggested a surgery date in three weeks. Amazed, I agreed. The ICD would help me stay alive should my heart go into cardiac arrest, and that was the biggest insurance policy they could give me. Dr. Johnson told me he hoped I would never need it, but just in case he wanted me to be safe.

The ICD (Implantable Cardiac or Cardioverter Defibrillator) implantation surgery:

The surgery was an outpatient surgery. It was important for me, at 21, to not be able to see a large scar across my chest from the surgery. Therefore, my plastic surgeon was able to make two small incisions for the ICD implantation. Then Dr. Johnson put the ICD (smaller than the size of a deck of cards) under the muscle of my left breast to minimize the appearance of it in my chest. Dr. Johnson then connected the ICD to my heart. Afterwards, the plastic surgeon closed me back up. All in all, the surgery lasted about 2 hours. I was allowed to go home the very next day.

Now my scars are barely noticeable. You cannot tell by looking at my chest that there’s anything implanted. However, if you feel around my breast you can definitely feel the device and up around my collarbone you can feel the leads (wires) going to my heart.

The battery on my ICD is supposed to last about 10 years, hopefully longer. Fortunately, I had health insurance at the time my surgery was needed, and given my condition, I must always have health insurance. Since fees and situations vary between people, doctors and hospitals, you will want to ask your doctor the cost of your ICD implantation, anticipated length of your surgery and hospital stay.

Post surgery pain and the first few weeks with the ICD:

The hospital nurses told me to keep my arm in a sling for the first week. This caused incredible pain in my shoulder from the immobility. Months later, I heard from another cardiologist that he tells his patients to dismiss the sling for that exact reason.

Post-surgery, I did not experience much pain besides the shoulder cramps. Occasionally while sleeping I would bump my chest or bend in a funny way that squished the ICD. It took about two weeks to heal and now I rarely notice it. I was instructed to avoid heavy lifting or strenuous activity for about one month.

Receiving “treatment” from the ICD:

The only time my ICD has gone off was two or three weeks post surgery. I was carrying a microwave (Christmas gift for my father) through the snow to my car. As I was stepping into the snow (about halfway to up my calves), I got the first of three “treatments” from my ICD.

The shocks were enough to cause me to drop the package I was carrying and double over, but no more than that. The three shocks came in quick succession. Each was distinct, but none hurt. I can only liken it to that wavy feeling you get when you touch something with an electric current. But it raises itself in you, shoots through your entire body and is gone before you realize what has happened. As soon as it was done, I was only left shaking and feverish. It only took about an hour before I returned to feeling normal.

In a way, I am glad that it went off. I don’t have to live with the fear or anxiety of what a shock feels like. It’s nice to know that it isn’t painful and is over before you realize it.

Living with ARVD:

Following my surgery, I noticed a few changes in my body. I was hyper aware of my heart’s beating. The first few months after I got my ICD, I noticed my heart palpitated while I exercised. The longest my heart stopped beating (that I know of) was three or four seconds. There are few things as disconcerting as taking your pulse and feeling nothing under the skin. But as time has passed, my heart rate has grown more reliable.

I was placed on a twice-daily regimen of beta-blockers to keep my heart rate in check. Beta-blockers slow your heart rate, which slows your metabolism. In three years I put on roughly 20 pounds. When I officially became overweight, I approached my cardiologist about reducing or eliminating my medication. Thankfully, my heart was able to tolerate functioning on its own and I am currently medication free.
I am encouraged to avoid alcohol and caffeine. I rarely drink either, probably about once or twice a month.

How ARVD has changed Lindsey’s life:

I am conflicted in the ways ARVD has changed my life. I think about my heart daily. I pray the disease isn’t progressing quickly. I keep up with my ICD checks, and am pleased to report I’ve had no tachycardia or fibrillation since my initial shock on December 22, 2006.

I cannot participate in contact sports and must monitor my heart rate while exercising. I get chest pain fairly frequently, but have been assured that this is a common symptom.

After my surgery, my dad was a wreck. He felt guilty and responsible for my situation. He apologized repeatedly, telling me he would give anything to take it away.

I have an older brother who shows absolutely no symptoms of the disease. He visits the cardiologist for regular check ups to be safe.

My mom is still paranoid when I lift heavy objects or exercise too hard. She is worried about me and I know that her concerns are based off of love. That love started this amazing website, and I cherish her for all her efforts to help those with this same disease.

My husband has been incredibly supportive of my condition since day one. He went with me to all my appointments and sat by my side as I recovered from surgery. This was one of the main reasons why I was sure he was the right guy for me. Not everyone is lucky enough to have the person they love take such an active interest in their health and hold your hand throughout your entire battle.

I try not to feel sorry for myself. This was the hand I was given, and I truly believe that God gave me this disease because I can handle it. I am filled with such hope. I never feel disabled by my disease. With the exception of airport travel, the ICD poses no inconvenience. Even my scars have faded. I am as active as I care to be and am confident that I can live a full, healthy life regardless of my genetics.