ARVD Definitely is Genetic

So my cousin just got a confirmed diagnosis of ARVD as well.  She has two little boys so they soon will be tested.  My cousin and uncle still have to undergo an EP study to see if they have any arrhythmias or whatever else.  My dad who got his defibrillator just less than a year ago, his disease is progressing.  Within just a couple of days he had 7 episodes recorded, one included him experiencing syncope and the other caused him to be shocked for the first time.  He will now be admitted into the hospital to start the anti-arrhythmic Sotalol.  So as my ARVD has reached a stable point, my dads has quickly progressed.  Now we're just waiting for our other family members to finish their testing.  I'm hoping my cousins' little boys of course do not have it, but the likelihood that they do is very high, at least one of them.  My cousin too, will probably need to be getting an ICD after her EP study, because although my uncle, her father, carries the gene but is not affected by it, she has experienced syncope a couple times.  So we are all very anxious to get the rest of the results.

And just a side note, to anyone who has just had an epicardial ablation or is struggling to find the right amount of exercise as to not progress the disease but enough to feel active, I strongly encourage cardiac rehab.  It's just working out under the supervision of nurses with a portable heart monitor to keep a constant check.  It has, more than I expected, greatly reduced my anxiety, which has helped just living day to day.  The Johns Hopkins team suggested I keep my heart rate under 115 but I've been keeping 122 bpm as my max.

An End is Only a Beginning

So after three months of cardiac rehab, including the three weeks I missed, I finally graduated.  I will continue to attend the HeartLife rehab facility as a member, which allows me to work out under the supervision of nurses, although I will no longer wear one of their heart monitors.  However, they will spot check my pulse occasionally.  That is why, after suggestions from the nurses and other ARVD patients, I have purchased my own heart monitor from a sporting goods store.

Most heart monitors in the consumer market are just watches that detect your heart rate while placing two fingers on two sensors of the watch, that responds in a matter of seconds.  But there are a couple watch monitors out there that also come with a chest strap.  The chest strap is capable of constantly monitoring the heart, without the use of finger sensors.  The one I purchased also gives me the option to set a personalized heart rate zone, and will beep anytime I go over my intended maximum heart rate.  I am very thankful for this, because without it, I most definitely would get my heart rate way above what I am allowed, which would then cause more scarring of the ventricles, and there is no reversing that.  So with this monitor, I am able to set my maximum heart rate at 120bpm and be alarmed by the watch when I exceed that, which also helps keeps my anxiety at bay, and makes me feel more comfortable while being active.

The past three months have been very encouraging.  I have made incredible progress, physically and mentally.  When I first started rehab, at the end of February, I was barely able to walk on a treadmill.  Mainly because of my disabling anxiety.  On my first day in rehab, they put me on the treadmill and had me start to walk at 2.5mph.  After 15 minutes they increased it to 2.8mph, and at that point I was too scared to do anymore.  At the time it seemed very fast.  But as the days progressed, and I continued to have no symptoms, my anxiety decreased, enabling me to push myself further.

By the end of it, I was able to do more than my heart was capable of.  Whereas, in the beginning, I wasn't even close to reaching the limits of the disease.  Now, I am able to walk at 3mph at a 7% incline, of course not for very long, because of my heart rate limitations, but still more than I ever thought about when I first entered the program.  Just in the past week, I was able to work out on an erg machine (indoor rower) for about 10 minutes, which I haven't done since 2008.  Like I said, the only limitations I have now are the ones my doctors set to limit the progression of my heart disease.  I am no longer chained and shackled by my anxiety.  I feel comfortable being active, and I now feel comfortable playing 18 holes of disc golf.  That was my goal.  Before rehab, I was unable to get through a couple holes before freaking out a little, now I'll complete 18 holes and want to do another round.  It feels good.

Cardiac Rehab was a huge step in my recovery process.  Without it, I would still be afraid to even walk.  Last September, I visited Glacier and only stayed in the apartment.  Five months later, I was back in Montana, back to being myself again.  I was able to get in a lot of walking without any problems.  Rehab has given me the chance to become more independent, more comfortable with my disease and even more confident in my abilities, and most importantly, given my peace of mind back.  I am very grateful I was given this tremendous opportunity and thankful to all those who have helped in my recovery.

Written Version of My Speech

If you are reading this, you probably know that I gave a speech at the annual ARVD seminar this year.  The seminar is an all-day event and most of it is filled with presentations given by doctors.  Toward the end however, a few people affected by ARVD present their story of living with the disease.  Last year, four people shared their story.  This year, it was myself and another guy, Killian, that presented.  It was a wonderful experience, it opened up the opportunity for people of all ages to come talk to me to discuss and share what we have been through, and how we've tried to cope.  Killian's story was very, very good, and he mentioned many things I had to leave out due to time, so our two presentations complimented each other well.  So below is the written version of my speech!

Well my name is Kiele Binsted, I just turned 25, and I’m from Greenville,SC. So I have a lot to say in a little amount of time so I’m going to jump right in. It wasn’t until Early last year I was officially diagnosed with ARVD, but I’ve experienced tachycardia and other symptoms since the 6^th grade.

So in 2009 I graduated college and became a seasonal worker.  I was living the good life, a worry free life. I travelled and worked in all kinds of different cities and resorts.

In the fall of 2010, I just finished working my third summer in Glacier National Park, Montana, when a couple friends and I moved to South Lake Tahoe to work at Kirkwood Ski Resort. But three days after our arrival into Tahoe, my plans suddenly changed.

We had just signed a lease for a new apartment and had only been unpacking our cars for about thirty minutes when I went into ventricular tachycardia. Since this has been happening to me since the 6^th grade I was very familiar with it, and usually, I could make it go away by sitting down and resting.  This time was different.  This time I didn’t pass out and literally had to gasp for every breath.  I was taken to the hospital and given a couple shocks. Later, I had been told I was minutes away from full on Cardiac Arrest.

I was eventually transferred to Reno, NV, which is where the closest EP to Tahoe was.  I stayed a month in Reno, half the time in the hospital getting my first ablation, and my ICD implanted, and the other half with my parents in a hotel room, who were kind enough to fly out from SC.

Now to catch you up to speed in lieu of this incident, like I said before I’ve been suffering from Tachycardia since the 6^th grade. During my sports especially basketball my episodes of Tachycardia caused me to blackout where I would still have control of my body, but I would lose complete eyesight.

The same symptoms continued all through college until my sophomore year in 2006, when the disease started to progress causing me to pass out.

I did see a Cardiologist for about 6 years but b/c all my tests came out negative he was convinced that I was dehydrated, and so I was convinced even after my Tahoe incident, I thought it was merely dehydration.  I was in complete denial that something more serious was affecting me.

Then, in the beginning of 2010, my symptoms started to become very sporadic. I was living in Portland at the time and passed out twice in two months.  The first time was out of nowhere as I was walking to work, and a month later, I passed out again after giving a four hour swim lesson in a heated pool. I ended up having a severe concussion and a month of vertigo.

Then two months after my last syncope episode in Portland, I decided to move back to Glacier for one more summer. The first night in town I had a bout with Tachycardia that led to syncope.  But instead of returning to sinus rhythm, like I usually had, this time when I awoke I was still in VTach for a couple hours. That was the only time I experienced syncope that summer, although I was still plagued by many episodes of Tachycardia, usually when I was playing Frisbee or basketball, but thankfully never when I was out in the middle of the woods climbing mountains. 

So after the season ended in Glacier, in September of 2010, that’s when my friends and I moved to Tahoe, and that’s when things got chaotic.  After my month stay in Reno I was stable enough to fly back to South Carolina. Shortly after getting home I kept going into VT so I had my ablation in January of last year. It helped some but not enough.

Because a couple months after the ablation, in March, my defibrillator went off for the first time.  It shocked me four times.  I handled it well, and carried on as if nothing had happened.  It wasn’t until a month later that things took a turn for the worst, when my defibrillator went off for the second time.  It unexpectedly shocked me twice while I was in bed about to fall asleep. It frightened me to think that I was not safe even in my own bed, that I could be shocked anytime or anywhere.

Since nothing obvious, triggered the shocks, doctors finally discovered an underlying genetic kidney disorder that only aggravated my ARVD.  Basically, my kidneys don’t hold on to my potassium or magnesium, causing critically low levels that produce arrhythmias.

After my last round of shocks, I had extreme anxiety.  I couldn’t sleep in my own bed for a couple weeks, I couldn’t sleep at all for that matter, and when I could I suffered from phantom shocks, so I didn’t even want to fall asleep. I thought every pvc was going to turn into another shock and sometimes I still think that.  I started to analyze each and every heartbeat.   I had no peace of mind.

That’s when Brittney and the Doctors here decided it was a good time for me to have an epicardial ablation.  Hearing that was music to my ears.  The procedure was done last year in the first week of July, and it was an all-day affair, it was very successful so as soon as it was over Dr.Tandri immediately took me off my anti-arrhythmics even though I was unbelievably apprehensive about it, but I had complete trust in him. Afterwards the procedure my sleep returned, my energy returned, and most importantly my heart has been stable.  So I am very thankful for all their hard work.

It wasn’t until a couple of months ago that I was really able to get active again.  Not only was my anxiety still high, but I was plagued by a number of different health issues.  It seemed like my whole body wanted to breakdown.  I even had to get my gallbladder removed just one week after the last ablation.

But for the most part, my health has been stable lately, so I’ve started taking trips back out west to see my friends, I’ve started attending concerts again but most importantly I’ve started Cardiac Rehab.

I love Rehab, nurses monitor me while I’m in a relaxed environment which makes me feel at ease when I exercise. I now am aware of my limits, and I am comfortable with an elevated heart rate.  So because of Rehab, my anxiety is not controlling me anymore and I’ve gained back some of that peace of mind I lost. But I will say there’s still not a single day that goes by when I don’t think about getting shocked.

Like many of you, the other biggest struggle I’ve had, besides the anxiety, has been the absence of physical activity.  I’ve been a competitive athlete as far back as I can remember, whatever the sport, it didn’t matter, even my jobs were physically demanding.  It’s been quite the dramatic lifestyle change. 

It’s hard to know that I can’t go on a long run, or get in a good swim workout, or play a pick-up game of Basketball or Frisbee.  but thinking about that only gets me down so I’m constantly reminding myself that “Life could always be worse.”  I remind myself that there are plenty of people in the world who are suffering much greater than I am and somehow that always manages to put life back in perspective for me.

It helps me realize I still got it pretty good. Even if I can’t participate in all the fun and games I once knew, I can still read and write and take pictures, I can go for walks, spend more time with the family, do Yoga, go out with friends, travel, create things, further my cooking skills, make art, learn to play an instrument. The possibilities are endless.  I’ve even picked up Golf and returned to one of my favorite activities, Disc Golf. 

Just because we’re prohibited from strenuous activity that doesn’t mean we are prohibited from discovering new talents and new skills that we may have never once known.

Life is always changing, whether for the good or the bad, so we must learn to adjust and adapt at what life hands us.  Life’s too short to spend time and energy dwelling on what I can’t do and what I don’t have, so I take that time to focus on the things I can do, the things I have, the things that are sure to bring me happiness in life, because life is just too short not to be embraced.

Now, this bracelet that I always wear, is one that I found in my grandmother’s belongings after she passed away.  She battled breast cancer for many years, and the bracelet says to Celebrate Life.  I never take it off because that’s what she did during her struggles and that’s what I’m doing.  You only live once and it’s worth the celebration.  So adjust, adapt, embrace the situation, and carry on, because, remember, it could always be worse.