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Living with ARVD/C

Gary Dexheimer was first diagnosed with ARVD at the Methodist Hospital Indianapolis, Indiana, in March of 2008. An ICD was implanted during the course of his hospitalization. In June of 2008, Gary's diagnosis was confirmed by a 2nd opinion from the doctors at the Johns Hopkins Hospital ARVD project. A former high school, collegiate and post collegiate competitive runner, Gary is employed as a National Sales Manager for a NJ industrial products manufacturer. He strives to bring additional awareness to ARVD, and is specifically interested in preventing the Sudden Cardiac Deaths of athletes young and old.

This column is intended to be a topical monthly column dedicated to those who live with ARVD. At times, the subject matter may be serious; at other times it may be humorous. Either way, the intent is to continue an awareness of the daily challenges of living with ARVD. The stories may change but the commonality remains.

Be sure to read Gary's "To Run or not to Run?" Also, Gary welcomes the emails of athletes, coaches and anyone else who has been, or who is, directly or indirectly affected by ARVD.

January 22, 2009
© Copyright Gary Dexheimer 2009

I thought I might begin this series with a personal reflection...

With little comment or discussion, I learned that I would be sporting an ICD in my chest for the remainder of my life. At that moment, ARVD and the health of my heart took precedence. There was very little thought about what this might mean to my daily life. At that moment, the common denominator for all who have ARVD became life preservation. Most concerns about this new found friend were pointless.

Once I realized that life would go on and I would return to my work, I wondered how this new object would impact my ability to do the industrial plant visits that I routinely do. A slight amount of common sense prevailed. I realized that in many automotive plants or steel mills it is required that I first do a safety review. I recalled the safety videos that usually addressed pacemakers, and those plant areas that were off limits. I also knew that I would need to be forthright with my hosts and let them know that I had an ICD.

However, what I did not know was if I could inadvertently wander into an area that would prove eventful. If I did, what would it mean? Would I be shocked, flailing about and falling on the floor in front of my client? That would make a strong "order generating" impression. What if they had to call an ambulance? Talk about being the center of attention. Now panicked, I began reading the Guidant literature. I read about induction furnaces, heat treat ovens, and welding. Okay, there goes the job. My supervisor, the VP of Sales advised, "No problem, we'll have someone make a lead suit for you – ha!" I found no humor in the fact that I might seriously be inconveniencing those distributor account managers that would be taking me into their prized accounts.

So, I called Guidant. Either the support technician quickly determined that I had a sense of humor or he was suspiciously sadistic. When I mentioned some of the areas that I had read about, he asked if I was planning on hugging the couple thousand degree furnace or the welder as I passed by them. If you have been in a steel mill and seen these welders, you know that hugging one of them is out of the question. Okay, now that I knew less than I did before, I continued my quest to determine how I might maintain "my" income.

Previous to my diagnosis, my wife knew that her life's work positively impacted many lives. Even so, this dedicated Special Education teacher had been counting the days until she could be done writing IEPs. Some of the constructive comments that I had begun making, like "Now that I have ARVD maybe I'll retire," and "You can get a second job," barely got a nod other than the "stink eye."

Okay back on track and back to reality, how was I going to manage without getting zapped? Being the type A personality, I finally decided I would just go for it and learn as I go. At first, I nervously entered each plant quickly telling my story and hoping that someone knew what they were doing. My thoughts were, "Oh my goodness, there's a welder! Stand back from that oven and keep everyone moving." I was sure that I was feeling something and I knew that in the next step I would get zapped. That was the only thing I didn't have nightmares about. Weeks went by. I stood by induction furnaces, I said "Hi" to welders, and nothing ... nothing happened.

The closest I came to a problem was when I visited a major high power and light plant. My duty was to look at a piece of equipment there. I commenced by telling my maintenance host about my ICD. He commenced by telling me that he would not be able to take me on a shortcut through the plant to view the equipment. You see, he explained, he could not take that particular path because when he does, he "feels the energy" in his body. That allowed for positive reflection! I swear upon leaving the plant that I felt something. You could hear the buzz from all of the energy. I felt slightly nauseous by the time I got to the car. Could I have just gotten myself a little too worked up?

It has now been months. I still haven't hugged my first welder, but I am doing my job. My wife didn't have to find that second job. I never got the lead suit. So for me, life goes on. I am living with ARVD, but I am not defined by ARVD. I only hope that I don't meet that one sadistic jerk who decides it would be fun to see me jump.

One final comment, for those living with an ICD being shocked is no laughing matter. That includes those of us who, to date, have not been shocked and hope this never happens.

March 6, 2009
© Copyright Gary Dexheimer 2009

I can’t imagine anyone living with ARVD who hasn’t experienced a hospital stay. Whether planned or through unfortunate circumstances, there is little humor to be found in finding one self lying in a hospital bed for an undetermined amount of time.

Depending on the cause or crisis, as the circumstances lead to a period of convalescence one might just for a moment reflect on the possibility that, while far from a vacation, this could prove to be a respite from the toils of daily life. After-all, one can expect to be cared for by the minute by a knowledgeable and pleasant staff that have only your welfare in mind.

While you accept that you won’t be dining at a five star restaurant, most hospitals allow you to order ala carte from a much improved menu. In fact, your new personal chef will make sure that you are now following the diet that is always so difficult to follow, either within your own home or while traveling for business or pleasure.

You find yourself making a list for your spouse thinking of all of the magazines, novels, and newspapers that you simply have not had the time to read. You reflect on the quiet time, the time that you will have for yourself without those little interruptions that so often distract you. You think about the days of sleep cut short by plans or opportunities, the naps that you always promise yourself and you know that this is now your opportunity to just lie back and relax. No, this isn’t a vacation. You didn’t pre-plan this. There is no cabana or beach, ski slope, or pretty little village but you will relax – right? One thing for sure is you will pay!

Photo c.1968-1969 Gary ran for the Ball State University track team from 1968 to 1972. He primarily competed in the 5,000 meter and 10,000 meter events. In 1969, Gary carried away the top ten in the Notre Dame Invitational and the Indiana Big State Meet. Disclaimer: ARVD-ARVC-Info.com quotes longtime ARVD experts Drs. Guy Fontaine and Frank Marcus, "Once, again, competitive or sustained strenuous exercise is not good for the heart in a patient who has ARVD."

Of course I am being facetious. Unless completely elective, most visits are not a choice and are initiated under duress. Once sufficiently recovered the immediate thought is,

We all know that once in, as each day passes the more compliant and accepting you become. Only then, do the thoughts described above begin to cloud your mind into believing that there may actually be an upside to this new temporary residence.

Having recent first hand knowledge following my third incarceration as a result of ARVD, I once again fell into this thought trap. This time I arrived at the ER slightly more clear thinking then in the past, recalling some of the contacts and effort that I had to put into resolving insurance difficulties following two previous visits. Into a new calendar year regarding deductibles and out of pocket expense and still reeling from the news of a temporary salary reduction, I was determined to minimize the painful aftermath of this experience.

Please do not put me in a private room. It could be medically necessary or it may be that is the only room type available but you will still bill me for the private room and my insurance will not pay the difference. My wife then fills out the admitting forms checking a request for a semi-private room. Did I mention that I ended up in a private room? I can’t believe that I am being admitted but I know that by tomorrow I’ll be on my way home. Honestly, I will walk out of this place!

So I made the list. I asked my wife to bring the newspapers and to run by Barnes & Noble for the book that I ordered. I met my first night tech. Man she looked young, like if my wife and I had started our family a little earlier she could have been our grandchild. Not really expecting to stay, I asked for a few supplies and announced that I was going to use the bathroom. Now sitting on the throne, in she waltzes providing me the towels and other essentials that I had requested. Something seemed not right with this picture.

Before I know it I am on my third day and every staff I have encountered sarcastically asks me, "So I thought you were leaving?" Heck, I am now well beyond any out of pocket expense and I have reached the compliant stage. Besides, the light bulb finally went on when I was told that I didn’t want this Staph infection to get into my heart or ICD hardware. It helped when I discovered that I could access the Internet with my laptop.

It had proved to be busy nights, between all the first nights admitting procedures and then the blood work, etc that needed to be done the second night. I worked, I read, I had adjusted to the bed and now I was ready to finally get a good night’s sleep.

That evening the tech came into to check vitals about 11:30 PM and woke me up. I commented to her that someone had mentioned the night before that I wouldn’t see anyone between the hours of midnight and 7:30 AM. Not only was that not the case, but I am convinced that someone entered my room every two hours between those times. We laughed, although I am not sure this qualifies as laughter when you are half asleep. She then mentioned that their nursing supervisor requires them to check on each patient every so many hours. By now I was awake. I told her that I recalled reading an article that hospitals had finally decided that the number of undisturbed sleep hours was more important for the health of their patients then some of the other previously required orders. She offered to put a note on my door about not disturbing the patient without staff approval. I was once again feeling sleepy so I laughed at her attempt at humor and fell back asleep. I also suggested that I would be happy to supervise her supervisor if only this supervisor would promise to spend five nights in a room that I could walk into every two hours.

Although the room was dimly lit I promised myself that I would look at the clock and take note every time someone walked in and woke me up. On one occasion I was startled awake by someone walking to my bed side, shaking my ice water bottle and walking out without saying a word. I discovered the next morning that the procedure I was scheduled for the next day required that I not eat or drink anything after a certain hour, so the nurse thought she better remove the water bottle. Once again I know that someone came in for one purpose or other every two hours. As I awoke that morning very deprived of sleep I noticed the note on my door, "Please do not disturb patient. Staff approval required before entering." Embarrassed, I sheepishly asked the nurse to please take down the note. She laughed and advised that any staff would have ignored it anyway.

I definitely could not wait to get home, to get back into my routine, to get back to my home office, to read the mail, to relax in my family room, and to eat out with my wife. However, if you extract all my attempts at humor I knew that I was in good hands. Some of the staff may look incredibly young but I only encountered skilled, professional, and compassionate staff. This will never be high on my list of relaxing vacation spots and should the occasion occur I will once again resist, but I am confident in knowing that my health and recovery will be foremost on the staff’s minds. Just don’t put me in a private room!

May 5, 2009
© Copyright Gary Dexheimer 2009

Writing a column about living with ARVD for those that have ARVD is close to being an oxymoron. After all, if you have been diagnosed with this, then you are in the process of dealing with the often used description of "new normal." The greater challenge is finding a way to describe this living a new normal life connotation to friends.

Depending on your personality type, your choice may be to simply maintain privacy about the details of your life. In my particular situation, I have chosen to talk about my life with ARVD in the desire to educate others.

Often I am approached by friends and sincerely asked how I am doing. We all know that there is no outward appearance to living with ARVD, so I accept that friends will not understand the inner feelings that accompany this new normal.

For many of the ARVD/C diagnosed group there is a profound recognition that intercedes once the diagnosis is offered or, for many others, after years of living with this disease. ICD shocks, the constant awareness of PVCs, the sudden cardiac death of family members, medication reactions or side effects, VT storms and the fear of or need for a transplant are those constant reminders.

For now, like others, I feel blessed. I have dealt with the frustration and anger of symptoms not easily explained and I have also spent time in hospitals concerned about what lies next. However, I now find myself feeling strangely good. I have not experienced an ICD shock and, to date, my extended family has been untouched by ARVD.

No one is completely unscathed by ARVD and, yes, I have made sacrifices in my lifestyle, my daily work and the athletic pursuits that for most of my life defined me. On the other hand, within months of turning 60 some of those changes were inevitable. There are times that -- as if I need to be reminded -- ARVD seems to sneak up on me.

Recently, my wife and I took a short vacation to South Carolina where we spent a couple of nights in downtown Charleston. It was a nice spring day, so we planned on walking the area, shopping, and locating restaurants for lunch and dinner. I’ll admit to having paid no attention to the directions we wandered. By the end of the day, we had managed to walk at least six miles. I felt fine until returning to the hotel, at which point the oncoming freight train ran me over; it seemed that the evening couldn’t end fast enough.

I enjoy the outdoors in our yard, but long ago recognized that -- with dozens of hickory trees -- the necessary fall leaf raking/blowing and spring clean up were no longer for me. I still enjoy being out and doing simpler tasks, like picking up the never-ending supply of sticks that fill our yard, and spring clean up of the deck and patio. A few chores on a beautiful day and the hours fly, then I finally realize that I, in fact, had worked for at least six hours. It is always when I decide to quit that I begin noticing the exhaustion that has now overcome me. Once again, this makes bedtime feel priceless.

I feel a sense of compassion for those in our support group that have been through so much and are continuing to struggle with what lies ahead. However, through the trauma, anger and frustration there is always hope and an expression of appreciation for what life offers. Those expressions are found in the numerous postings by group members who have not forgotten that a sense of humor is a great antidote for moments of anguish. Group postings are filled with simple truths and reflections and, often, there are those profound moments when in reflecting on someone else’s thoughts you find yourself pausing to consider -- inspired by a tribute.

Sometime ago, our support group member Patrice offered deep sentiment and insight in reflecting on her circumstances. To paraphrase, she commented on her previous life style and how her days were filled with activities and exercise, often running, doing aerobics classes, lifting weights and then filling her weekends with numerous other recreational activities. There were many comments in response to Patrice's support group posting; I am convinced that many of us saw a bit of ourselves in her former energized schedule. ARVD/C puts the brakes on. In the end, Patrice was forced to reevaluate her life’s activities and slow things down. Her comment to this was, "I don’t miss spending every weekend at 90% of my target heart rate –- not one bit."

There were years that when, on the occasion that I was injured, my wife suggested moving to a remote island ... and she wasn’t talking about an island vacation. She intended for me to find that island where no one would have to put up with my frustration at not being able to run.

Over time, age caused the weekly miles to drop and competition no longer held the allure of past decades. The occasional race, planning workouts, the preparation and clean up would often take hours out of the day. As I reflect back, I am amazed at how I traveled for business, often entertained clients, spent a full day working and, for decades, would still get in up to two runs a day at 50 – 70 miles per week ... often in strange environments and lousy weather. Like Patrice, I am not sure that I miss it one bit.

Patrice went on to explain, metaphorically, that she might measure her self-esteem by how much she could bench press. She chided herself by asking, "What else do I have to offer and how might I define myself?" New activities filled in those gaps and, for Patrice, these new interests brought a whole new group of treasured friends.

The label of "ARVD" is now a part of our persona but, as Patrice went on to describe, it hasn't stopped her from doing most of the things she wants -- only she has redefined those things within which she finds value. She states that she rides a Harley now -- sitting on the back and enjoying the view. She also states that she still dances, but respects her heart rate so that "Joules" (her ICD) doesn’t get upset.

Patrice values her life voicing that she reads more, drinks better wine, teaches others and spends more quality time with family and friends. We spend our days in motion, hoping to leave a legacy and too often forgetting to take time to smell the coffee. Patrice goes on to explain how her ARVD/C support group family consists of caring, smart and courageous individuals who provide answers, lift her spirits and make her laugh. She profoundly offers, "My life, as well as my understanding of ARVD, would not be so rich without this group."

Upon final reflection, Patrice offered that there are other diseases more devastating than ARVD/C and that she is thankful not to have them. She continued with, "I intend to keep taking care of myself, paying attention to my heart, stretching my mind and my world, and appreciating every day."

Of the several hundred support group members from around the world who have on occasion had many of these same thoughts, I am not sure that, in aggregate, we could have more profoundly stated those same shared feelings.

After lamenting my progressive, serious heart condition to a counselor who I had hoped would give me clarity about "just being," she simply reminded me that life is a daily risk and we never know what turn we might take. As Patrice reminds us all, we need to embrace each day and find small tributes in each task.

As a runner I can’t escape relating everything to athletics. I saw a posting from fellow support group member David about how he was attending an indoor track championship as a coach rather then the champion competitor of just a year previous. His fellow competitors asked about his goals for this year’s championships, i.e what was he "shooting for." His retort was that he was "shooting for a 'lifetime' with my wife by my side and watching my children grow."

I wouldn’t have chosen this path. The daily inconveniences can be aggravating. I’ll admit to be on the fortunate side of dealing with ARVD/C. We all know that we can’t plan our destiny but, like Patrice and David, my plan is to make the most of this "new normal." Through my ARVD/C support group, I will enjoy a new set of friends even if we have never met. I will also find the humor in paying for counseling sessions, only to have the counselor remind me that I should look beyond my serious heart condition remembering that I have little control over most of life’s destiny.

Heartfelt thanks to Patrice and David for providing me permission to use their thoughts.

August 13, 2009
© Copyright Gary Dexheimer 2009

I would like to offer a special thanks to Dennis Umber for offering to collaborate with me on this column. His story is a wonderful and powerful example of maintaining dignity and a positive attitude in the face of adversity.

To be shocked or not to be shocked, how does that change living with ARVD? To live with ARVD and an ICD is to be continually reminded of the possibility and the worry of suffering the inconvenience of a life saving shock. How does this statement change for those who either have already experienced this potentially life altering event, or for those who have yet to feel the effects of their device ending a serious arrhythmia?

In previous columns I have noted the well stated hopes and expectations of those who have had to accept ARVD into their lives. Like most well documented cases of individuals who have been forced to accept a life altering disease, we maintain dignity and humor in dealing with the changes that are necessary to maintain stability in our life.

I talked with so many individuals at the Johns Hopkins seminar, who have been shocked and no one described this as a "walk in the park experience". However, everyone did mention the significance of having this trusted friend that they could depend on to keep them safe. Talking with others reminded me how fortunate I am that to date I have not experienced, as one individual described – an electrocution. While that may not diminish my worry, I believe that this does allow me to more easily maintain a very positive outlook and not dwell on future outcomes.

While that may be easy for me, how does this change for those who have experienced the trauma of not only being shocked but, for many, being shocked multiple times? How do you deal with the immediate mental and physical anguish and still come out on the other side, able to maintain a positive attitude about living with ARVD?

I know that there are many who post about ARVD who might profoundly offer their take on this subject. Since this column is dedicated to all who are diagnosed with ARVD and the support that this network offers in living with this condition, I invited one of our own to collaborate on this column and offer his insight into dealing with the aftershock of moving on with his life, following episodes of multiple shocks.

I encourage others who are intrigued by this opportunity to consider collaborating and tell their story. That way we might find a means to jointly discuss issues important to those who are living with ARVD.

Dennis Umber, of Scottsdale, AZ, was one of the first individuals who I talked with following my diagnosis in 2008. I found comfort in that conversation. As I note the posts of newly diagnosed individuals, I know that they too find that comfort in realizing all of those who may respond to their concerns. Since we all have ARVD in common, it only makes sense that in most cases the described events leading to a diagnosis are eerily similar. However, there are those who have traveled before us and they are the pioneers who blazed the path to this clearer understanding of living with ARVD.

Dennis is one of those pioneers and his story began in the summer of 1988. While I know that there are exceptions, it appears that for all of those who I have met most of us have one trait in common. Most individuals appear to be intelligent and driven professionals. Most were, at the least, recreationally active in a variety of aerobic sports and many were at the top of their game competing for personal gain.

On a July day in 1998 Dennis was in his office and found his heart pounding so fast that he couldn't count his own heart rate. He recalled that after an episode of profuse sweating and nervous concern his heart rate seemed to return to normal. He knew that it would be unwise to ignore these symptoms so he called his GP who asked him to stop in that afternoon. Although his GP advised him not to worry, he did mention that he found an abnormal heart rhythm. Following blood tests he received a frantic call from his physician, who wanted him admitted to the hospital immediately, concerned that he had experienced a heart attack. Two weeks and a series of tests later, he was discharged, put on anti-arrhythmic medication and told to cut back on his running.

Dennis is a professional architect and was very involved in competitive running, cycling, swimming, and downhill skiing. Routine physical exams were always unremarkable. As a sidebar, I myself have previously noted that from college on, as a former competitive athlete I was routinely tested at the Ball State University Human Performance Laboratory. While I now realize—following a thorough review of past ECGs—that I did show a characteristic T wave inversion, no alarms were ever raised in all of the testing that was done.

For two years Dennis continued to run believing that this incident was a freak occurrence, although his irregular heart rhythm did continue, but without any repeat episodes. In 1990 following a morning run he again experienced an episode of VT. After two hours his concerns increased enough that he asked his wife to drive him to the ER. With a bpm at 260 he needed to be cardioverted. The next step was to meet an EP who, after numerous tests, concluded that he needed an ICD. Dennis commented that in 1990 that meant open heart surgery to sew patches to your heart, implanting a book sized generator into your abdomen. He elected for a cocktail of anti-arrhythmic drugs, explaining that he had little interest in being butchered.

In 1991 after some persistence he managed to be seen by Dr. Frank Marcus at the University of Arizona. Following a two week evaluation he was diagnosed with ARVD, then considered a very rare heart condition with no cure. The option of an ICD was again discussed, but as before Dennis elected instead to try a very "powerful" medication called Amiodarone.

Dennis recounted that it was during this stay that he encountered his first "awake" cardioversion during electrophysiological testing that allowed him to feel a 200 joule shock. This shock was administered because his heart had suddenly accelerated into a very dangerous rhythm. The shock was so powerful that it lifted him off the table and he had to be treated for second degree burns of his chest and back, as well as administered sedatives for his accompanying anxiety.

Between 1991 through 1994, despite being on Amiodarone, he continued to experience episodes of VT and on each occasion ended up in the ER to be cardioverted. In 1994 he received notice that a new implantable defibrillator was available that didn't require open heart surgery. His EP made it clear that this was not offered to Dennis as an option but was mandatory for his long term health. Following surgery he lamented that his former six pack now had a large bulge that required him to wear a corset for two weeks, so that this helpful device didn't rupture out.

This new "look" in Dennis' abdomen proved to be the least of his concerns. Three weeks following his implant he received the first of three successive shocks while at work. This experience was terrifying for both Dennis and his employees. His EP then reprogrammed his ICD settings hoping that this would resolve the triggering of VT. That not only didn’t resolve the potential for shocks, but over the next two years Dennis was shocked approximately once a month. In 1995 he was sent to UC at San Francisco for his first ablation procedure. Twelve hours and 38 "burns" later the prognosis was termed a "hopeless case". In 1996 a new doctor at UCSF took on his case and performed a second ablation. The procedure was termed a success and Dennis believed he had his normal life back.

Two months later the balloon burst and the shocks returned. Disappointed, his EP placed him on a combination of Amiodarone and Sotalol. For five years this combination helped and Dennis accepted that he could live with an occasional shock. In 2002, ARVD took a back seat to his wife’s terminal lung cancer. Dennis is convinced that his stress allowed his VT to return. At his lowest point in all of this, he was admitted to the hospital with his terminally ill wife visiting him at his bedside, knowing that their young son was at home wondering if he might lose both of his parents.

Dennis' journey with ARVD became solo after his wife's passing in November 2002. In 2004, he was introduced to a local doctor trained as a specialist in difficult ablation cases. This EP would use new and improved three dimensional mapping technologies, but unfortunately an unavailable special catheter was needed, so once again the procedure was unsuccessful. In 2005, Dennis returned for another procedure assured that this time they would use a special "super sized" irrigated tip catheter. Once again they were unsuccessful in ablating the target VT site. Dennis also found himself going in and out of VT post op.

From October through December of that year Dennis lived with daily episodes of VT often times just below his pacing threshold. On these occasions he would actually run in place, in an attempt to raise his heart rate enough to receive pacing therapy, so that he might be converted. By December of 2005 the VT intensified to the point that once again he was getting shocked. Dennis' doctors increased his medications and added Flecanide. While in the ER on Christmas Eve of 2005 his EP again offered an ablation as his savior and added that this would be done by Dr. Vivek Reddy at Boston Mass General.

On January 8, 2006, Dennis flew to Boston in the company of his brother. Dr. Reddy planned on using a new magnetically guided robotic catheter system for the epicardial ablation.

Following a seven hour procedure and recovery Dennis heard the news that he had been waiting years to hear. Dr. Reddy believed that this procedure had been 99.9% successful. Tears of joy proved to be an understatement. Dennis and his brother spent the remainder of their time in Boston celebrating and touring historic "Bean Town".

Several months ago Dennis posted to the support group within which he participates. He reflected on his optimism, his faith and how he had made a choice to positively live with ARVD. This was another wonderful example of how we choose to live with a progressive heart disease. Dennis' story would be enough to test the heartiest of souls -- and to add to this the loss of his dearly beloved wife —- it is a testament to his belief in a positive and fulfilled life.

Dennis still has to pinch himself, to accept the fact that since January 10, 2006 following the success of his epicardial ablation he hasn’t experienced any episodes of VT. His only current medication is a low dose of Sotalol. From 1994 through 2006 Dennis recorded twenty-eight shocks and one hundred and six anti-tachycardia pacings, all administered by his ICD. No one can offer him any assurances as to what the future holds, as there is no clinical data on the long term results from epicardial ablations. Dennis recounted that he credits the constant support of his wife, the patience and care from all of his physicians, his faith in God, and his enduring belief that he would retain his joy in life knowing that someday things would get better.

It is with this spirit that we all live with ARVD. Dennis acknowledges that he is continually humbled by "...those who suffer with disabilities far greater than mine... I hope that my story can serve as an inspiration to others. ARVD is a long journey, sometimes taking us to the brink of sanity but through hope, our faith, perseverance, and the support of our loved ones, we continue to live with hearts full of joy and take pleasure in all of life’s offerings to their fullest."

This column expresses the opinions of both the writer and those that may contribute their personal reflections on a topic. This writer possesses no medical background. The author reminds all who read this column that for any stories or opinions expressed readers should always review any questions or concerns with their personal physicians.

December 30, 2009
© Copyright Gary Dexheimer 2009

Wins and Losses

Lately my thoughts have been all about balls. I never had any interest in trying to juggle but was fascinated by the skills necessary to keep a number of balls up in the air all at the same time. I may not literally be able to juggle but for some time now my wife and I have been constantly juggling our own balls and trying to keep all of these balls from crashing on to the floor.

I don’t believe that there is anything selfish about living with a progressive heart disease and occasionally feeling a bit sorry for oneself. A couple of weeks ago I went in for my in house annual interrogation of my ICD. After noticing that the EP nurse was now aghast in viewing the monitor I then glanced at the screen and discovered that I have been dealing with episodes of both non sustained and sustained VT for all of the summer. For my family that was just another event in the seemingly constant barrage of unfortunate experiences that we just can’t seem to escape.

I suspect that for anyone living with ARVD there are those reflective moments when just for a few seconds you give pause to some of the regrets in your life. The upside of that is to develop a bucket list. With that in mind I thought I would dwell for a moment on some of those losses that have occurred in my now 60 years.

My career began in Education and I was a well respected teacher and coach. However my impatience got the best of me and after two years in the classroom/gym I jumped to the business world. If the goal was to make an absolute ton of money I didn’t accomplish that. Now I find that my teaching friends who were more patient then myself are retiring before me and enjoying a comfortable benefit package.

My parents, siblings, wife and now my son have advanced degrees. If I had remained in education most likely that would have happened. I didn’t pursue that. I believe that I would have made a great administrator. I had a memorable athletic career, won a state championship, ran in college and continued with success post collegiate. I never ran in an NCAA championships or earned All-American status. I felt that I needed to get away from home and attended college out of state. Most of my high school rivals attended the University of Wisconsin and did achieve those accomplishments.

Like most young married couples Becky and I struggled financially in the early years of our marriage. As our family grew we enjoyed the material gains that we had earned. We traveled on nice vacations, skied every winter, partnered in a Colorado Mountain retreat and generally enjoyed ourselves and our children. We should have been better savers and planned for the future. At the age of 60 we wouldn’t still be paying off college loans.

The list could go on. The point is that we all live with regrets. The truth is that in living with ARVD shouldn’t this change any perspective on regrets? The human spirit is remarkable in that most of us manage to bury the regrets and generally find ourselves recalling only those pleasant memories.

I met my wife of thirty six years at Ball State. It would have been logical to stay in state and attend the University of Wisconsin. My life would have played out very differently. The person that I am today developed from my four years at BSU.

As an educator I had the experience of being a part of the desegregation of the Indianapolis Public Schools. I planned, financed and organized a first year football program at the middle school. Although finances may have been tight for Becky and me these pre children years were filled with friends and fun times.

Although I didn’t accomplish many of my early running goals I have previously recounted how I enjoyed forty five years of running, countless miles in interesting and exciting locales and many lifetime friends. Along the way there were enough competitive successes to make this all exciting and fun. In fact, being a runner was my impetus to most of my life’s accomplishments including meeting my wife at an indoor track meet. While not quite a bucket list my yearly goals always included being a better dad, a benefactor to others and of course a compassionate and loving spouse. Those goals were always at the top of the list as I usually found those were the hardest attributes to attain. I am sure that Becky would agree that those are still a work in progress.

Years ago I was offered the opportunity to be involved in a city social services developed faith based program. The purpose was to mentor single mothers who needed help in establishing directions and goals. For almost fifteen years Becky and I have remained friends with Mary and her youngest daughter.

In the mid eighties I had the occasion to venture to war torn El Salvador where my brother was working in mission with the people of this country who were most affected by the U.S. financed travesty that displaced a majority of the population. Witnessing the faith and literacy of those where education and the right to live in faith was not an entitlement was a life enhancing experience.

For me personally, living with ARVD or the fact that I am still living, should be all the motivation necessary to live the life that I desire, forgetting all regrets and focusing on the pure enjoyment of life. However, we all accept that in living we deal with daily challenges, bumps in the road, hills to be climbed and valleys to fall into, balls to juggle, and moments and memories to cherish. At the risk of being repetitive I believe that the common theme in each column I have written is that I would not choose to live with ARVD. That allows for moments of regret. This also allows for times of anger. Looking no different then anyone else on this planet, at times I want to scream look at me, as I am forced to live with a progressive heart disease. While I may not be in bed with a bell, at times I want my family to feel empathy for my cause. On other occasions I get angry because I am not allowed to forget, as I want to live my perception of a normal life.

I know that I must return to my full plate of messy balls and as I throw them into the air I again accept the fact that I have no clue how to juggle. While I can’t escape that I live with ARVD I do accept the premise that most of the balls in the air have little to do with ARVD and are simply about life. It does not escape me that for anyone diagnosed with ARVD attempting the act of juggling does beat the alternative. There are those less fortunate who may have not been diagnosed and therefore the outcome was in not living with ARVD.

January 1, 2010
© Copyright Gary Dexheimer 2010

Acquired ARVD?

Over the long haul for those that have ARVD does it really matter what the reasons are for having ARVD? Will specific knowledge change the symptoms or the outcome? The research says that there is a link between continued competitive or endurance athletics and the disease progression. If an individual can establish that there is a genetic link through known family history or gene testing then logic would suggest that additional family members may at some point be affected and that some cardiac testing might be prudent.

Recently I had the privilege of attending the induction ceremony for of one of our group members as an athletic hall of fame inductee for his high school. Both the member and his spouse have an extensive medical background. We have ARVD in common. More importantly we have another attribute in common. We are both competitively driven endurance athletes that were successful in high school and college and then continued to train and compete for many years beyond.

Interestingly enough, whereas we were both diagnosed with ARVD the other element in common is that neither of us present with the heart muscle fatty infiltration that is thought to be common in patients diagnosed with ARVD. In fact, that finding is an important part of the identifying criteria. I have previously noted that I was able to present an ECG from much earlier testing as a former college athlete at Ball State University. That ECG seemed to be the “smoking gun” in explaining my diagnosis. Most individuals diagnosed or thought to have ARVD would not have the luxury of an archived ECG.

Recently, a case study was released at the Monash University Medical Center in Melbourne, Australia on a 32 year old female champion tri-athlete that developed recurrent sustained exercise induced ventricular tachycardia. This case study questions whether prolonged exercise over many years might contribute to recurrent ventricular tachycardia and the possibility of acquiring ARVD, probably presuming that there was a pre-disposition to ARVD?

As our family’s talked at the high school induction ceremony my friend’s wife suggested that she had queried her husband’s EP about the possibility that this was all caused due to his excessive activity and training level? In fact, we know that there are a number of members of the ARVD community that were equally as active, competing at a highly accomplished level and have no known family history or genetic link to ARVD.

On the drive back home my wife remarked that you know that you probably did this to yourself. The remark was not said to be mean spirited but as a matter of fact statement that maybe there is some link to long term sustained competitive endurance athletics and ARVD. For the research experts this may be one of those "yeah duh" moments but I believe that everyone would agree that at this point it is doubtful that there is enough long term research to affirm this.

The most significant point is that ARVD is still rare so that even if a link was proven it is unlikely that the majority of competitive endurance athletes would have any need for concern. The problem would then be how does the medical community assist athletes in understanding whether they might be at risk long term for acquiring ARVD? If this was possible would it change a highly successful athlete’s outlook and contribute to a modification in the lifestyle that they are accustomed to? Personally I can suggest that someone might have needed to use a rather large hammer to tap my head and convince me to sacrifice the success that was still within my reach. In my case I was only the seasoned mid level competitive athlete. I was far from vying for an Olympic berth or any possibility of fame and fortune. To achieve that level the athlete must be incredibly focused and would be less likely to accept any disturbances that might detract from their quest.

However I find any hypothesis that long term exposure to extreme training in competitive athletics might contribute to an eventual diagnosis of ARVD intriguing, as this might explain a great deal to those of us without any prior family history.

I should note that there is another published article in this web site titled "Sports Participation Carries High Arrhythmic Risk in Patients with ARVD." This again confirms that there has been a good deal of discussion about sports participation and increased arrhythmic episodes.

I distinctly recall that in past testing at BSU the comment was made that wow your heart is one of the largest we have ever seen. As I have been part of a continuing former athlete evaluation program I don’t recall at what point in my life that comment was made. At the time I am sure that it was meant as an off handed compliment as most endurance athletes were thought to have larger hearts and while in college my measured oxygen uptake was quite high. Now accepting that there is damage to my right ventricle I would have to wonder if there wasn’t prior evidence of some early damage.

I possess no medical background or any qualified relationship to the researchers to know where the next years of investigation might take us in better understanding ARVD. What I do know is that regardless of medical background common sense might suggest that continuously stretching the heart muscle through years of prolonged endurance training might in fact contradict the accepted logic that this only serves to strengthen the heart muscle. If future research leads to a better understanding there may be the possibility of influencing or re-directing those young athletes away from a career of prolonged training that may lead to the possibility of acquiring some form of ARVD and permanent heart damage.

Ideally what needs to be learned is how long can a highly successful athlete sustain training without contributing to any damage? Further what might be considered a safe level of training for the recreationally competitive athlete in his later years?

As stated we all recognize that ARVD is somewhat rare. The question statistically is how many high school and college athletes continue to train for a prolonged period of time? While that number may have increased over the years the percentage of former athletes that continue on is also a small number. However, there is far greater motivation to do that today than there was thirty years ago. At that time the only athletes that would have continued beyond college were those that had Olympic potential or were considered professional athletes.

Training methods and priorities often change as quickly as the change in fashion designs. I believe that today’s athletes may be better tuned to their bodies and that periods of planned rest are an integral part of any training program. In the early 70’s as the running boom began the top marathoners of our day routinely put in excess of one hundred miles a week with the elite runners sometimes topping 150 miles. To run at a competitive level most accomplished runners accepted that this was a seven day a week and often two workouts per day program. At the absence of many indoor facilities, new clothing designs and treadmills kept us going no matter what the weather might bring.

Today bike paths, planned trails, numerous indoor facilities and even better clothing make training safer and easier. Regardless, most post college runners today do not run seven days a week, run twice a day or run at any cost no matter the weather conditions. There are those that would suggest that it is a softer generation but I believe that in most cases this generation represents a better coached and more intelligent athlete. Normally I am quite good at deflecting or arguing against any contrary comments that my wife might make. The question remains what if I did do this to myself?