ARVD IT IS!!!

So I am officially diagnosed with ARVD. The trip to Baltimore proved to be a success in the fact that I am now diagnosed and no longer left in the dark wondering.  When I first arrived to my appointment I was given an EKG, and a Holter Monitor to wear for 24 hours.  Then I met with the lead researcher Brittany Dye, and the lead geneticist to discuss ARVD and the future outlook of the disease.  The first hour was spent answering questions they had for me, to fill them in on any blanks they might of had, and to catch them up on my situation and why I was there.  The two of them spent the second hour explaining ARVD in detail, and that is when they confirmed I had the disease.  I had not yet been diagnosed with ARVD because my MRI kept being read as normal. Apparently, there are only a handful of doctors in the US who have the ability to read an MRI of the Right Ventricle correctly.  So the doctors of John Hopkins did in fact see deterioration of the heart, and that combined with my other symptoms led the ARVD team to officially diagnose me with the disease.

After speaking with the two of them for a couple of hours, I then met with the head of Cardiology and ARVD, Dr. Hugh Calkins.  He categorized my disease as being a moderate case, falling right under severe.  He reassured me that his team would do everything in their power to prevent a heart transplant for as long as possible.  Most people with ARVD who have heart transplants don't need them until they are in their 40's, but my disease has progressed pretty far for such a young age making it possible that I may need a transplant before I hit 40.  In the majority of ARVD cases, patients usually aren't even diagnosed until their late 30's or early 40's, but at the same time it is a disease that can be caught at the age of 7 or 75.  And it's a disease that interferes with some peoples lives but never bothers the next.  It has certainly interfered with mine, so my next option will be to undergo a third ablation.  It is called an Epicardial ablation and considered major surgery so I will undergo general anesthesia, whereas in previous ablations I was awake for the majority of the operation.

During an Epicardial ablation, two catheters are used instead of one to race the heart in hopes of pinpointing the faulty areas of the heart. Heat waves are then used to burn off any of those faulty areas. One catheter enters through the groin, maneuvers up to the heart, and attacks the inside of it, while the other catheter enters through the chest and attacks the outside of the heart.  The procedure has a high success rate, and since I am not content with my current state, I am opting to get this done as soon as possible.  Dr.Calkins will decide if I am eligible for the Epicardial ablation based upon the results of the Holter Monitor.  The purpose of the heart monitor is to read how well the medicine is controlling my heart.  If the results aren't enough to decide upon the ablation, I will then wear a second monitor, an Active Heart Monitor.  That monitor will be worn for at least a week to record more information.  So within the next month or so we should have a better idea of whether I will be going through with the third ablation or not.

After I saw the doctor, before I left the hospital, I had my blood drawn.  ARVD is a genetic disease, so the researchers at John Hopkins are going to study my DNA to try and find the mutated gene.  Only in the past five years have they been able to find genes in the DNA that cause this disease.  That goes to show you how rare and new the research is.  Only 50% of the cases are they able to find the gene that is causing the disease, and if they are able to find it then they can try and determine what side of the family it came from, whether it came from my mother's side or my father's.  If they do in fact discover what side of the family the disease came from, then my first cousins will also have to be tested. But my brother will be next to have his DNA examined, due to the fact the gene could have easily been passed on to him as well.  If they find signs of the disease they will require him to abandon all physical activity as well, if they are unable to find any mutated genes than they will allow him to continue on as normal, keeping a close eye on him.

Not only is ARVD genetic, it is also a progressive disease that contains two central parts.  The first part is the racing of the heart, tachycardia, which is the Arrythmogenic part.  The second part is an enlarged right ventricle and deterioration of the muscle cells turning into scar tissue and fat cells within the right ventricle, the Right Ventricle Dysplasia part.  Physical activity is the kryptonite to this disease, and will progress the disease more rapidly than anything else, so from here on out I will no longer be aloud to exercise.  The doctors explained it as faulty super glue.  When the heart pumps, it expands and contracts.  When you have ARVD, after the heart expands it doesn't always contract and that causes tacychardia and scaring of the tissue.  After so many times, it will cause the heart to go into cardiac arrest and heart failure resulting in sudden death. The doctor said I was very lucky to still be alive, that I could have passed away during any one of my syncopal episodes.  Reflecting upon my situation, I am very grateful that I am still able to breath this air, and walk this ground knowing ARVD is attributed to at least 25% of sudden deaths in student athletes.

As backwards as it sounds, exercise is killing me and always has been.  Physical activity will now have to be limited to simple walking or playing golf, although I was told I could go skiing once in a blue moon.   It is hard to imagine that for the rest of my life I will no longer be able to participate in any kind of physical activity.  I will never be able to go kayak a river, or go for a run on a beach, go swimming or get to play a pick up game of basketball, frisbee, or soccer. I can't even play tennis or racquetball.  Sports has always been part of my life, it is something that came natural to me, something I was good at. Life for me is completely different now and it hasn't hit home quite yet.  The task for me will be to not focus on the things I can't do but the things that I can.

So now I have decided to focus my time and energy on learning new hobbies that include the game of golf, the practice of yoga, playing guitar and cooking healthy dishes with local ingredients.  I will also pick back up my favorite game of disc golf, that is, as long as it doesn't boost my heart rate too much.Of course I still have my other hobbies as well that I have picked up during my six months of idleness, such as my increased time for writing and reading, discovering new music, and my various art projects.

In less than one month from now, I will be returning to Baltimore to attend an ARVD seminar.  It will give me an opportunity to learn about the new research associated with the disease, and it will also give me a chance to meet other people my age that are going through this.  John Hopkins, who specializes in the disease, only has 400 patients in their registry.  That includes people, like me, from other parts of the country.  Out of millions and millions that live in this country, that is a very small percent of the population who have been diagnosed with this disease; 400 was the size of my graduating high school class.  And like I said before, this disease is rare in younger folks so there probably won't be too many people my age with the disease, but I believe the seminar will be good for me.  Many people who are diagnosed with ARVD were once very athletic.  My goal will be to figure out how they coped with the daily restraints of physical activity and discuss the things they do to stay healthy.

This new life I am living is completely opposite than what I once knew.  All it takes is a couple of hours and some unusual overwhelming events to suddenly and drastically change a person's life. But as Victor Frankl once said, "When we are no longer able to change a situation, we are challenged to change ourselves." So because I cannot change my situation, I will be forced to change the person I am.  I have decided to use this time to work on myself.  To self reflect and attempt to better my mind and soul.  The past couple of years I was moving through life a little too fast with not enough thought.  Don't get me wrong, I was living life to the fullest with no worries, having the time of my life, but I wasn't pausing to fully embrace myself in the moment. I once was told 'if nothing ever changed, we'd have no butterflies'; but change does happens. So I have to believe something good will come of this or if nothing else, I have to create the good, for time is the greatest innovator. I just make sure to always remind myself  that 'It could always be worse!!!'

So that's that!