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ARVD

Well I guess I'm first. I have a condition called ARVD. It is a genetic disorder that affects the Right Ventricle of the heart, and turns the muscle tissue into a fibrous tissue. I have had to give up living an active lifestyle and even abandon one of my dreams.

jb3126 jb3126 26-30 8 Responses Sep 9, 2008

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My ex bf have that :( we were together 14 years. Luckly he is ok now, he is on many meds and with a pacemaker. I hope you are doing well.

I will start off by saying that I was a competitive high school cross-country and track runner. I had no fear of pain and always wanted to be so fit that I could achieve the sensation of flying. I earned a scholarship to a Division 1 school on the East Coast and was part of a team that placed 8th in the country. I was the Atlantic Coast Conference Freshman of the Year in track. And then I started to black out sometimes or get intense tunnel vision. Once I lost my balance and crawled the last 50 meters of a cross-country course. I felt intense pain in my chest that receded after a half hour. After my sophomore year I left school for a variety of reasons and only one of them was the feeling that my life was dictated by running and nothing else. A few years later, I was out by myself on a Sunday morning run and felt a strange sensation akin to being struck by a small bolt of lightning. Within moments my vision had narrowed and begun to tunnel until I was forced to lower myself to the ground hitting my head on the sidewalk as I did it. I regained some vision and made it back to my house where I threw up and lost bowel control. I called my mom who was a nurse and was told to squat down, run my fingers along the fluttering veins in my neck moving them in a slow downward direction. I was told to make a groaning noise to contract my chest. This worked and I assumed I had survived heat stroke.
Two years later the same thing happened but this time I was running alone on an Indian reservation in Arizona. It was twilight. I will spare you the long story, but I barely made it home. A similar phone call to my mom was made and eventually the paramedics entered my room as my roommates stood around watching. I was given lidocaine and asked if I could remember on a scale of one to ten ever feeling this amount of pain before--I think I said "eight" reasoning that I wasn't dead yet. I was promptly shocked by an external defibrillator. Immediately the stabbing pain went away and I was strapped to a gurney and wheeled to the back of an ambulance. All the while I still thought I had heat exhaustion.
Within 8 days, after 2 or 3 exploratory microscopic surgeries to test my heart's propensity to go into a V-tach or worse, what they called a "fatal rhythm" I was fitted with an implanted defibrillator. So little was known about the condition I had except that it fit the description of ARVD that I was told my condition was idiopathic-- no one knew what it was. I was told that now, with the defibrillator I was safer than most people and could do as I pleased including, if I wished, training for marathons, drinking coffee and living a normal life.
Somehow though, I knew everything had changed.
My first couple of years were characterized by depression and a very slow recovery from the physical and psychological trauma of the experience. I was shocked twice--both times in the fall and I think both times while running. It was like getting kicked in the chest as I was told it would be. I was obsessed with the notion that I could die at any moment, or that my body could start to die and that I would be shocked over and over again.
Instead of my condition improving, my fear and anxiety increased. I had been offered no social worker, no support group and I still didn't even know what I had. To add to the problem, I didn't have insurance and didn't know how to get it.
I don't recall exactly how the next few years went but my fear and anxiety increased and so too did the frequency of shocks. I began to check my pulse obsessively. I thought I could figure out what (besides running which I had finally stopped) caused the shocks to occur. For a while I thought it was black beans and later moving from a dark room to a bright room too quickly. Sometimes, because I feared a shock I would move in a split second from a standing position to pressing myself flat on the floor. I would choke down water and look for earth, just dirt to "ground out" the shock, crawling toward it if it was near and I felt my heart begin to race. I feared my own death constantly and thought that if I could just master my mind the heart problems would stop. But I was unable to. I was able to work intermittently but my work and my relationship was suffering.
Somehow, one very dark and wet winter, gripped by fear, I called the number of a social worker who worked at the hospital where I had received my defibrillator. She identified my condition as PTSD or, as I pointed out, CTSD (current traumatic stress disorder). She said she has seen high power executives taken down by less, unable to leave their homes. She expressed real sympathy when I described my constant fear, and my pattern of being shocked twice a week at totally random moments. Her acknowledgement of my condition gave me a sudden and incredible relief.
Not too long later I found a site online on which many many people talked about living with defibrillators. There were so many different views and experiences, from anger and psychological paralysis to attitudes of gratitude and religious fervor. I realized that I had a choice. I could live in constant fear trying to master the absolute panic that would seize me, or I could let my body do what any body does--be completely terrified in moments when my heart was in fibrillation, accepting that my body and my mind want to live and will react wildly when under threat--and then live between moments with the simple ease knowing that at least for the time being, I was okay. I knew that my quality of life depended on allowing each moment to be what it was, letting go of anticipation and anxiety.
Later that year I had an ablation surgery after my doctors realized I had been living through such frequent episodes of being shocked. My relationship fell apart. I started graduate school. My heart seemed to settle into a steady rhythm. I fell in love. My heart got steadier. That was 7 years ago. LIfe hasn't been perfect but I am active (I walk). I even let myself play a rowdy game of tag football on the beach this summer running for over an hour. I am a step-mom and a high school teacher. I don't know what the future holds but it has been long enough since I was shocked last that I don't think about it much these days. I know for certain that it wouldn't take much to flip into that cold, dark fear but I also know that the moment would pass. I try and just appreciate that I have been enjoying a few years of relative ease knowing that the future is uncertain and that my condition, now certainly diagnosed as ARVD (thanks to genetic testing), is a progressive disease. I try to live better for having this knowledge but lots of times I forget.
I think the experience of getting to know fear this way has allowed my entry into a new level of empathy for the fear of others, whether the source is real or imagined and I think that my appreciation for times when I feel really strong and really alive has grown exponentially. It was a really long road and I hope I can remember it even if the physical symptoms increase again in the future. For now I plan to just enjoy the ease I have.

Hi I'd like to help u when will u be online?

I have been suffering from arrhythmia (although the type is still unknown to my doctors), I have had 5 seizures, about 30 fainting episodes, palpitations, and a clear ECG showing my heart stopping briefly in one occasion. I was wrongly diagnosed with Epilepsy for about a year and was given medication for that. Fortunately my mother was recommended to take me to a cardiologist since the issues persisted. The cardiologist explained to me that it was clear to him that I was having abnormalities in how my heart conducted electricity and that when the connection was too weak, I would then have one or more of the symptoms I suffered. He did not have the technology necessary to diagnose me further and my parents could not afford more than the Holster, ECGs and Electroencephalographs. Long story short, after I graduated from HS I stopped playing so many sports and avoided all of the things that seemed to make the symptoms appear (caffeine, little sleep, jumping a lot, cold medicine, etc.), the symptoms would go away from a year then come back especially during high-stress situations. After a while I thought it was magically gone, but that wasn't the case. My symptoms are not as severed (I havent had a seizure since my teens), but the rest still occur just not as frequently. My mom recently watched the TV show Diagnosis X in which a 21 year old was going through the exact same issues that I had and continue to have and she was diagnosed with ARDV. I do not know if this is what I have, but I will follow up with my Doctor again, for the 3rd time to ask him to please help me figure out what is wrong. The only thing they have done is run a ECG, but I am aware that if it is not done specifically to look for ARVD it might be missed. I also found that sometimes not all ARVD patients show irregularities in their ECG. I want to have children soon and want to join an intensive sport, and making sure that Doctor's are aware of my condition, whatever it is, is very important to me. It's been truly difficult to realize that due to my symptoms being less serious nowadays, my Doctor is not taking what I had told him I have gone through and still go through seriously. He is not the first one to ignore it. I can now see that the now infrequent and less severe symptoms are probably just due to chance: I changed my life style for a while, but what happens when I start playing competitive again? I do not want to wait and see.

Hi,<br />
<br />
I'm Tambug29, and I have dilated cardiomyopathy, I was 33 years old when I found out , and at the time I had a job I loved and 2 small kids. My life changed. I had to give up the job and 4 years later found out I suffered from sudden cardiac arrhythmia, and I had a defibrillator implanted. One year and 4 days after being warned to get the implant my device went off. I was shocked 3 times. I share your pain of being shocked. After that I'll never do anything to risk getting shocked again. I wish you all the best.

Fortunately they found your heart condition. My 20 year old son passed away in 2001 due to a sudden cardiac arrest. Through autopsy they found he had ARVD. <br />
<br />
Although our lives are forever changed I know yours has also knowing you are living with ARVD. We have met others living with this heart condition and heard many stories when going to Johns Hopkins ARVD research seminars each year. They have one of the best doctors at Johns Hopkins for ARVD. <br />
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It most definitely isn't a wise idea to play competitive sports...I wish you luck...

Well the doctors told me to stop going to the gym and playing sports competivly. I went against that once and my defibrillator shocked me 4 times. So I listen to them now.

My grandfather had a heart condition and well I kinda inherited one...I haven't let it control my life though!