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.

Double Scope

Scroll to the bottom for results (last paragraph) if you want to skip the reading.


I am so thankful to be over and done with all of this Gastrointestinal nonsense.  Not only was getting the Scopes scheduled a frustrating process, but the prep work, the cleansing I had to do to prepare my body for the Colonoscopy and Endoscopy, was brutal.  It was nauseating, tiresome, gross, and a bit painful.

The day before the Scopes I had to be on a Clear Liquid Only diet.  It wasn't too bad, but because I take a large amount of pills, and many require food to be taken with the pills, I was extremely nauseous all day.  But the real challenge came at 7:30pm when I had to start drinking my prescribed Prep Juice.  It was 6oz of hell, that I had to mix with 10oz of water.  I was aloud to mix the prep with Gatorade or Diet Sprite, but when I opened it, the liquid didn't seem to smell too bad and it was clear, so I thought mixing it with water would be just fine. But oh, how I was so, so wrong!  I had to finish the 16oz of pure nastiness and then down another 32oz of water within the hour.  The mix was so gross I almost threw up four different times.  I luckily was able to hold it down, but I came very, very close to expelling the Prep from my body immediately.  It took me half an hour to get down the first 16oz of mix, which made me feel deathly nauseous for the next two hours.

It was definitely a brutal experience, I was just trying to imagine how I was going to do it all over again in the morning.  Because come 8:30 in the morning that's exactly what was in store for me. Another round of 16oz mix followed by 32oz of water immediately. This time I had learned my lesson, the hard way of course...the story of my life.  So this time, I mixed my prep with Gatorade and after every large chug I sucked on a Lifesaver to change the taste in my mouth.  It worked for the most part. I only came very close to throwing up once.  After I finished, I felt like shit, but I was extremely elated.  No more!  I had gotten through the hard part.  I was very pleased to be done with my prep work. 

So 12:30 came around and we headed to the hospital for the Scopes and I was taken to the back right away.  It's always pleasant when you don't have to spend an hour or so in the waiting room.  They took all my history, put the IV in, gave me some happy meds, and then carted me off to the operating room. Next thing I know, I'm waking up screaming and crying.  The doctors used Twilight sedation as opposed to General Anesthesia, meaning I was still asleep and was able to breath without assistance. So when I was coming out of my Anesthesia, I was actually awoken by a nightmare I was having.  I thought I had gotten shocked, and it sure felt real.

My dream, I remember it very vividly, had me lying on an operating table surrounded by a bunch of nurses that then used paddles on my chest to shock me [End Dream].  So after my scopes, when I was in the recovery room in a deep sleep, I started to scream and apparently yelled for my mother.  The nurses went and got her and by the time she arrived, I was still half asleep so she was trying to wake me up, even though at this point I was full on crying.  I kept asking if I had gotten shocked and I was informed that I had not, and that my heart was just fine, but I could not wrap my head around this. The shock felt so real, looked so real, that I truly believed I had indeed been shocked.  After the nurses and my mom kept reassuring me that I was fine and that nothing of the sort had occurred, I was trying to understand why my dream was so real.  I have never reacted to anesthesia in this way.  I always wake up from it in a calm, drugged up sluggish way.  But this time was very different.  Anesthesia can do some really crazy things to a person in general, but come to find out the nurses were talking about my history in the operating room, while I was under, about being shocked and they carried on a conversation in general about being shocked. Since I was not completely anesthetized, even though I was asleep, my brain probably picked up on the conversation and I believe that is where the dream came from.  Not to mention, the last time I went under with Twilight sedation*, in Reno, NV during my first ablation, I was shocked.  Like I said Twilight sedation does not completely knock you out, so when I was shocked, I was awake and I felt it, and it was the worst pain I have ever felt.  It is much worst than an internal defibrillator shock.  I cried and cried and then threw up and cried some more until the doctors knocked me completely out. So between being shocked the last time I was Twilighted and the nurses talking about being shocked while I was asleep, that led me to have a nightmare, truly believing and feeling that I had been shocked again, and it was quite a horrific and traumatic experience. It was a terrifying way of waking up, but my heart was stable and that is all that matters. *All other surgeries and ablations I have had used General Anesthesia.

The good news however, is that the doctor did find some things that are probably causing my severe abdominal pain, yet not very serious problems.  He found a lot of inflammation on my right side as well as a good amount of bacteria in my colon which caused two pre-ulcers, as he called them, that he also found.  One near my stomach and the other in the inflammation in my colon.  The inflammation and the pre-ulcers can be reversed with the use of medicine, Nexium.  How long I will have to stay on the medicine is unknown.  Some stay on it for months, some stay on it for life.  So I'm hoping for the former.  The doctor also did a biopsy just to make sure everything was A-Ok and when the results come back from that, I will also be put on an antibiotic to rid my body of the bacteria, which could be caused by the large amount of potassium I take.  But we'll figure that out later.  Sooo... this means I'm going to Montana and Seattle!  I will have to miss a week and a half of cardiac rehab but that is doable, I'd much rather go out west and see me friends. 6AM Monday morning, I'm out!!!

Cardiac Rehab

So far I have attended three cardiac rehab sessions.  Given this disease, I am not aloud to participate in any strenuous activity.  Johns Hopkins spoke directly to my nurses and doctor at Cardiac Rehab to discuss my parameters.  They decided that I am not to lift anything heavier than 10lb hand weights and that my heart rate should not exceed 120bpm.

The first session went well, I spent the first half hour speaking with the doctor about my health issues and the second half hour walking on the treadmill for 2.7mph.  It was a good start.  The second session I was able to get in a full hour of exercise.  I started on the stationary bike for 15 min and then I walked on the treadmill for 35min at 2.8mph.  This past session, my third one, really wore me out.  I spent the first 12 min on the stationary bike and rode 2 miles and then walked on the treadmill for 25min at 3mph, which was really tiring, and then went back to the bike for 10min and rode close to another 2 miles.  While walking, my heart rate rose to 114bpm, which is normal but a bit nerve wracking.  I just don't know how much more exercise I can do if I'm not aloud to get my heart rate above 120.  But it's good to know my heart is staying strong, even though the reality of never being able to participate in sports again is very heartbreaking.

I do indeed love going to rehab.  All the fellow patients look after me, are very friendly, and very very chatty.  Rehab lowers my anxiety giving me confidence in myself and in my health by being able to see my heart react to the exercise. This may not seem like much to most people, but it is a tremendous step for me.  Being shocked by a defibrillator really takes something out of you, it takes your strength and confidence, it can make you fear life and fear all the small things, and most of all it takes your peace of mind.  Every night as I try to fall asleep and I feel my PVC's (skipped heartbeats) all I can focus on is the fear of getting shocked.  Everyday I think about getting shocked, every single day.  So this rehab is not only to regain my confidence and rid myself of anxiety, but to find some sort of peace of mind. That's what I truly want, Peace of Mind.


Health Update:
I went for a check-up with my Nephrologist, my kidney doctor, and he informed me that my carbon dioxide levels are low.  I've been getting my blood checked every month for about 7 months now and every month the CO2 levels have been low. This is due to my kidneys malfunctioning.  If the levels of carbon dioxide become too low and remain that way, that will cause the blood to become very acidic which could eventually start to corrode the bones.  So once my stomach issues are solved I will have to start taking a baking soda pill to keep those levels under control.