ARVD for me has been a huge jigsaw puzzle that is like trying to fit together so many pieces but having no idea where or how they fit together until now.
Life with ARVD has been a nonstop roller coaster with a lot less ups compared to the downs, twists and turns that I have experienced. As a teenager I was an active, fit sportsman, who ran, worked out and played soccer 5-7 times a week. There is no time I can remember just sitting down doing nothing, I always had to be out doing things if not sport-related, then socially-related drinking, partying. Just being around people doing something.
I was living life with no care in the world. I was immortal.
In 2001 changes started to happen to me. I would notice that after playing soccer it would take longer to recover. I felt more lethargic during the day and would often sit in the shower with cold water running over me to try and get my heart rate down. I remember being unsure when I awoke if I had just fallen asleep or blacked out, but my heart was no longer racing. It was just the cooling down for my heart that was taking longer. I was 20 years young, and the possibility of heart problems never entered my head.
In June 2001 it was confirmed. I was feeling tired and decided to go watch a movie whilst lying on my bed. My eyes were closed again and I was not sure if I fell asleep or blacked out but the movie had ended. I must have been out for a couple of hours. When I awoke, my heart was racing, it was a struggle to move, to breathe. Why did I feel like this? I hadn't been doing any exercise today.
I consulted several friends, who looked at me and felt my chest. They agreed, "that's not normal, you should go to hospital." I ignored their concern and thought if I had some water and food it would all be okay. My girlfriend was less of a pushover and told me I had to go (six years later I married that woman).
Upon getting to the hospital, they sat me on a bed, placed wires all over me and ran a few tests. Then they came in and looked at me, explaining that they couldn't treat me there. They had to call for an ambulance to transfer me to the district hospital.
I'll never forget the words of the paramedic in the ambulance. "Are you okay?"
"Yep," I replied.
"Feel any dizziness or lightheadedness?" they followed with.
"No, I feel fine."
We both looked up at my heart rate on the monitor racing at an incredible at 270 bpm (beats per minute). The paramedic replied, "I am going to give you some drugs because at this rate, you should be dead by now!" It hit me, this is something serious. I should be dead?
After several tests over days, ECG, Echo, MRI, stress tests, halter monitors, they confirmed to me I had ARVD. I had no idea what it was and it wasn't really explained well to me. I was to take some medication. I told them I wanted to go home and get a second opinion.
I continued to play sports and things were tolerable on the medication. Now and then I would get a racing heart rate, so I would just take more medication. Then during one game I started to feel dizzy, but I kept going. CRUNCH, I broke my foot making a tackle. Now I had made harder, bigger tackles before but somehow this one broke my foot. That would be my last game before heading home and getting my second opinion at my home hospital.
Again in 2002 I went through all the tests and consultations and again it was confirmed that I had ARVD. This time it was explained to me more thoroughly what the condition was, how it meant my heart worked, what the possible treatments were, and the possible consequences if I chose to do nothing. But I was 21 and this kind of thing doesn't happen to people like me or people my age.
I was set in my ways talking to my family, friends, and girlfriend. I would not have an ICD. Nothing will happen to me. I am fine and it will get better. Then the biggest coincidence happened on June 26, 2002. I had just flipped the TV channel to a football (soccer) game between Columbia and Cameroon. No more than two minutes had passed on the clock when a player collapsed on the pitch and died. That player was Marc Vivian Foe, and to this day his death is the reason I am still here. If it could happen to a professional athlete, it could happen to me. I called the cardiologist the very next day and I was scheduled to have my ICD implanted.
I had my ICD implanted in August 2002, and after a few weeks recovering I got back into working out and playing football. I was feeling the fittest I had in a while, and I had this box in me that would do its thing when needed.
In November 2002 while football training, my ICD did its thing. I was covering in goal and having a rest when "BOOM." Honestly I thought I had been shot and did not know what had happened. Everything moved in slow motion around me, then "BOOM" this time it hit home and everything sped up. I shouted to my coach who saw me drop to my knees. Another two shocks later and I came out of VT. Later the hospital would confirm exercise-induced VT and that my ICD had done what it should have. That was the end of my football career. Retired at 22.
Six months passed, and I was still working out and trying to be active when I got my second therapy. This time after trying to be smart and keep up with the guy on the treadmill next to me, I went into VT. I knew it was coming so I jumped off the treadmill and went over to my girlfriend.
"BOOM." It's gonna be okay, another couple and it should get me back to normal. After five and nothing, I was in pain. The gym members were walking by helpless and confused. After I think 12 shocks I prayed for it to be over. It hurt too much, and it wouldn't stop. I felt like I was drifting away as the ambulance came and took me to the hospital. They gave me some medication to bring me back to normal. After drugs and 18 shocks, I was finally done. From that point on, I had a scar in my mind that far outweighed the scar on my chest.
After that episode, the doctors decided to do an ablation and I was sent on my way and admitted to the hospital. The damage was done. I was a broken man. No one knew what I was going through, no one knew the condition I had or what it felt like to be internally shocked 18 times. I refused to leave the house, and I was put on medical leave from work. I did nothing, I became agoraphobic (fear of the outdoors). I sat in the house alone from 8 a.m. until 5 p.m. with maybe a visit from my sister or a friend. The only time I would leave was with someone and that was to go to counselling sessions to try and help me get over it. But how could they help, they didn't know me or what it was like? If I was going to do it, I had to do it myself. I started to take baby steps, seriously, baby steps. I mean, I would walk to my front gate and then back in the house. Then I built up the courage to cross the road. Then I walked down the street and a bit farther. All I could do is shuffle. Like an old man, I would not walk properly and my fingers were constantly attached to my next to check my pulse.
Then one day I decided I am going to surprise my girlfriend by walking to the bus stop to meet he. She will be so proud I got this far... She wasn't on it. Shit, now I had to walk home alone. I started getting very anxious and my heart started beating faster and I panicked. My dad pulled up in the car and I crawled in. "BOOM" it went off again. After another eight shocks on the way to hospital, I just wanted to die. I couldn't live like this. I had another ablation and started to take more steps to getting over things but I refused to go anywhere alone. After two months sitting at home and putting on 70 pounds I returned to work. My girlfriend and I had to make a decision in this time as well continue to live in England or move to New Zealand.
We decided on New Zealand. I had too many demons, and if we were ever to get married, this would be our place to bring up kids. After one final shock in November 2004 (which was fine because I blacked out), we moved to New Zealand in December 2004.
Once in New Zealand, this was my chance to start a fresh. No one knew who I was or what I had. I got a job and started at a gym within a month of being here. I got registered at the hospital, and they had some great cardiologists at the time, and I was living life again.
In 2006, it was discovered my lead had fractured possibly due to much gym exercise. I was booked in to have it removed. Unfortunately when extracted I had a nice infection that had grown in my chest around my ICD that my doctor only described as really bad mouldy cheese. This meant I had to wait three weeks to get it back in so I was admitted to hospital all this time. When not having it in I was allowed out on day release but was instructed not to go far or do anything to strenuous. My fingers began creeping up to my neck to check my pulse, my long strides had turned into a shuffle, and I then realized how I was a broken man again. This time without my insurance policy inside me.
I got a new implant and since then have had another battery replacement. My chest is starting to look like a tally chart with all the lines across. It has been nine years since I have had any shock therapy from my ICD and the 70 pounds disappeared. I have married the women who stuck by me through all this and have two beautiful kids who if they do inherit ARVD I will help guide them through it and help them live life.
Why is my ARVD a gift? Six years ago my father died of prostate cancer, and when I was first diagnosed he hadn't spoken to his brother for a few years. As all family were advised to be treated we had to tell him to get my cousins and he tested too. From that point on they spoke they had a relationship and when my dad passed away his brother was at his bedside with him. My diagnoses brought them back together and as long as I have that memory and know this disease is responsible for that, I would not give up this condition for it was a gift to someone else.
In my opinion of things that happened to me someone sacrificed their life to get me to make a decision about getting an ICD and I having this condition was a sacrifice to get two brothers back together.
-- Lee Renton
This is the first story from Lee Renton. Thank you for sharing.