Kyle is thriving and not just surviving with heart disease.


kyle sabc colorI grew up as a very active kid.  My parents always had us outdoors.  We hiked, skied, swam, and played soccer. You name it.  In high school, I ran track and cross country pretty competitively and noticed that my heart rate was always extremely low (max HR around 129).  I attributed my low heart rate to being in really good shape.  Later in life I would learn that this was an example of the amazing power of the human body to adapt and overcome congenital defects.  Running wasn’t the only sport that I competed in growing up.  I also swam on both club and HS teams, ski raced and coached as well as played on numerous soccer teams. Other than some battles with IBS I was an example of great health, nobody would have ever suspected that I had heart disease.

In college at the University of Colorado, I continued to be extremely active as an Army cadet, collegiate cheerleader and outdoor enthusiast.  I enjoyed climbing, hiking, and skiing with my friends.  I took a break from college to enter the Army in a fast track program into the Special Forces. This training is one of the most physically demanding things that a human being can subject themselves to.  After leaving the Army, I went back to school to study computer science at Texas A&M University Corpus Christi.

After graduating from TAMUCC, I moved back home to Washington state and found myself in the corporate world.  This would be the one period in my life that I let myself get out of shape.  LOL.  I did continue to ski, which was fortunate as that lead me to meet my now wife, MacBeth.  It was a few years later that I would meet some friends that would get me into cycling, and shortly after that… triathlon.  MacBeth and I bought road bikes and started riding with this new group of friends regularly.  One of them even talked me into doing a sprint triathlon.  Lesson learned, don’t eat Burger King the night before a triathlon!  We were enjoying this new sport and the friends we had made.  The group decided to do the 208 mi Seattle to Portland ride.  After mile 50, I started cramping and salting out really badly.  I had not been drinking enough electrolytes.  In the Army as a medic, I always had IV’s!  So, I rode the remaining 158 miles cramping the whole way, after which my friend, Bryan Riechert, bestowed upon me the nickname Mr. Crampy.  To this day many in the multisport community know me by this name.  🙂

In 2006 we went up to watch Bryan’s girlfriend, Colleen, do Ironman Canada.  As many of you know it’s hard to watch an Ironman and not be inspired to do one yourself.  So the group of us signed up, and it was on.  2007 rolled around, and we trained hard doing the Hawaii 70.3 half as our warm-up.  Warm was an understatement!

Race day was finally here.  The 1.2 mi swim was a little scary being the 25th anniversary and they allowed over 2500 participants in a mass swim start race, but it went pretty well. The bike was grueling with all the climbing but after 112 mile that was behind me, and I was happy with how it went.  Now onto the run.  Being a runner all my life, I was looking forward to this part.  The first 8 mi went well not too fast and not too slow.  Then, suddenly, it happened … my first major cardiac event.  My heart went into what we can only assume as A-fib momentarily.  Then, my body shut down.  I went into auxiliary mode, something I have become all to familiar with, but am very thankful for.  I couldn’t think very clearly, nothing was working and my chest hurt. But I kept on walking … and walking … and walking.  Taking nutrition at the aid stations, I had no idea what was going on and just figured I was “bonking.”  Suddenly at mile 18, my body snapped out of it, and I started running again. Back down to an 8 min pace.  I finished the race in a great time considering I walked 10 miles.  I was an Ironman!  But something wasn’t right, and I knew it.

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I started working with my general practitioner doctor, wore a halter monitor etc.  I even consulted a cardiologist, but they could not figure out what had happened.  As I trained and raced, I continued to have these “attacks.”  Most were relatively small and short lived.

Fast forward a couple years and in 2009 after racing several more Ironman 70.3’s and half marathons, I went back to Ironman Canada.  This year there were massive forest fires and smoke choked the entire field, the end of the bike and entire run were a struggle, but I finished.  As I crossed the line a friend, Mike Harrington, caught me.

In 2010 I needed a break from the corporate world so MacBeth and I decided to open a triathlon/bike store.  We wanted a fun and unique name so we decided on Mr. Crampy’s Multisport.  Through the store I was able to meet hundreds of people in the triathlon community one of which was David Watkins, the founder of the Ironheart Foundation.  Dave was in the process of filming a documentary called “HEART: Flatline to Finish Line.”  I became actively involved in supporting the movie and Ironheart Foundation through my store.

In November, I decided to run the Seattle half marathon to try and pace a friend to her first sub 1:30 half.  At about mile 8 as we started up the big hill “it” happened again.  This time the attack was pretty big, my chest was pounding and didn’t feel right.  My head ached and body shut down.  All I could do was walk up the hill, hoping it would go away … and it did. So I started running again, I made it a little ways further, and it happened again.  I thought about stopping but figured with all the road closures and not having a way to get in touch with MacBeth the best bet was to just keep making my way to the finish.  I don’t remember a ton about that day, but I recall having about 9 or 10 attacks before finally making it across the line.  It was the longest hour and forty mins of my life to that point.  The next day I reached out to Dave and he referred me to the University of Washington Cardiology Department.  We spent the next 6-8 months running all the standard tests, none of which were conclusive.  They concluded that I was just training too hard.

Frustrated with my lack of a diagnosis and knowing my body all too well, I begrudgingly backed off my training and racing.  Almost a year had gone by, and I had gone from being a supporter of the Ironheart Foundation to a full fledged member, a frustrated one.  I toiled away in my store helping everyone else train and race.  As much as I love helping others, it takes it’s toll.  I have never been “benched” so to speak.

In August, my dad rented his home in Sun Valley to a family from Minnesota.  The father was a surgeon at the Mayo Clinic.  This man and his family would turn out to be one of the most amazing people I have ever met … Dr. Craig Johnson.  They were having lunch with my dad when he let on that he worked at the Mayo Clinic, but was far too humble to let on exactly what he did.  My dad mentioned that I was battling health issues and frustrated at the lack of diagnosis.  Craig asked if I would let the Mayo Clinic take a crack at it.  He picked up the phone and called Dr. Ackerman, a cardiologist famous for his work on sudden death syndromes in athletes, most notably Long QT.  After briefly describing my situation and symptoms, Dr. Ackerman insisted that I fly out as soon as possible.  The Johnson’s insisted that I stay with them in their home while I was there.  Again, I can’t begin to tell you how amazing this family is.

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I got on a plane and flew to Rochester, MN where I met Dr. Johnson at the main entrance to to main building.  He walked me through check-in where they handed me an itinerary for the week.  A what?  On my schedule was every test I had ever taken and tons I had never heard of, consultations with multiple specialists.  I looked at Craig and asked, “Don’t I have to wait two months between each of these?”  We both laughed as he explained that is not how the Mayo clinic practices medicine.

After the first day of multiple blood tests, ECG’s, echo’s it was time for the stress test. Walking down the hall with the doctor that would administer the test I jokingly asked, so are we using the Bruce protocol?  He laughed and said “ummm not exactly, we know you’ve maxed that, it’s not designed for athletes.”  He paused then continued, “Your last big episode was at the Seattle half marathon correct?” I replied “yes,” He followed up with ‘Well, I’ve loaded the course profile into the treadmill. I hope you brought your running gear because you will be RACING a half marathon including a warm-up.”  So that is how they practice medicine at the Mayo Clinic.  Unfortunately, I was not in the same shape I was a year before and the treadmill once again yielded no results.  But later that day a chest CT with contrast timed with my heart beat would.

On day three I met with Dr. Ackerman, we had a long conversation where I gave him my life story, etc. LOL.  Then we talked about the results of all their testing.  He had determined it was not likely an electrical issue, but they weren’t completely ruling that out yet.  The CT had revealed a myocardial bridge of the LAD coronary artery.  Translation: 3cm of my LAD artery were embedded within the heart muscle and was getting clamped off with each beat. He explained to me that at that time bridging was still not very well understood or the effects it could have, especially on an athlete.  He recommended that I follow up with Dr. Lerman, one of the leading cardiologist specializing in bridges and vasospasms.  They believed the bridge may be causing the artery to go into spasm and collapse from time to time.  After consulting with Dr. Lerman, they both decided that they would like to do an angiogram to perform a spasm study.  Surprisingly, they asked if I wanted to do it right away.  I was there alone and asked that I have it scheduled a month out so that I could return with my wife for something that invasive.

We returned a month later.  They ran several more tests, and I consulted with several more cardiologists. They also decided to implant a small loop recorder, basically an EKG the size of a USB stick that would continuously monitor my heart and store any anomalies that occurred.  Finally, they performed the angiogram. They were not able to get my heart rate up using debutamine so the pressure tests were not very conclusive.  Then they moved on to the spasm study.  After administering acetylcholine they observed not only vasospasms at the site of the bridge, but literally everywhere.  I could hear some anxious voices from behind me as they asked if that was what my attacks felt like.  I replied “Yes!”  Finally, we had reproduced it!

Dr. Lerman met me in the recovery room where he explained what they had learned during the test.  He said, “Well today we through the text book out the window. It is wrong.”
Wow, that was an incredibly bold statement!  He explained that they were no longer convinced that the vasospasms were caused entirely by the bridge because they watched everything collapse, as he showed me on the computer.  He continued, normally this is what causes a heart attack and kills people.  We both paused for a moment for that to sink in.  He said they have no idea how I survive it and have no tissue damage to the heart or subsequent blockage.  He then said I think we may have to call you the Wolverine, and we both laughed.  He went on to explain that what they saw was called endothelia dysfunction, according to knowledge at the time this was caused by high cholesterol, high blood pressure and inactivity.  In my case I was the exact opposite of that in every way which caused them to realize these were merely complicating factors and that the underlying cause was actually something else, most likely genetic.

So, within a month I had two diagnosis which were a myocardial bridge and general endothelial dysfunction.  We discussed the possibility of “unroofing” the bridge to prevent the heart from constricting the artery, but that surgery had not been performed very much and the top cardiothoracic surgeon at the Mayo clinic, Dr. Schaff, would only perform it open heart and was not convinced that at this point it would be worth the risk.  He prescribed me a calcium channel blocker to act as a vasodilator.

In order to test the effectiveness of the medication, he asked me to train up for and race the Arizona Rock n’ Roll half marathon.  Yes, you heard that right folks!  He told me to keep training!  He felt that one of the main reasons my body was able to fight my condition was my level of physical fitness, so take note of that.  This is why one of the main goals of the Ironheart Foundation is to promote an active lifestyle as both prevention and therapy for heart disease.

Race day came, and I was excited to give it a go.  While me “attacks” had not gone away, they were a little more manageable.  The plan was to go hard and if I had a major attack to get to a med tent and get an EKG as quickly as possible.  When I lined up in the front corral guess who is standing in front of me?  Kara Goucher! It was her first race after her pregnancy.  I may blame the rest of what happened on that … hahaha.

The first 8 miles went great, with sub 6:30 pace.  Then suddenly just as an aid station came into sight “it” happened.  I felt massive chest pain and the body shut down.  I got to the station as quick as I could and they radioed the ambulance, who was staged on the opposite side of the course.  They got the gurney across the course, and at this point there were not very many runners.  By the time they went to wheel me back across the course, it was packed.  About half way through the crowd someone ran into the gurney. I looked up and he looked down.  It was my old friend, the same one that had caught me in the Canada finish.  I said “Hi Mike” he replied.  “I’m coming with you,” he replied.  “No way you are in the middle of a race!” I said.   He replied, “It’s not going very well, and this is far more important.”  I can’t begin to list the number of friends who have supported me in times like this over the years.  Mike hopped in the aid car with me, and we rushed to the hospital.

Sadly to no avail, they were not able to capture anything useful. But I learned another lesson that day.  We found ourselves in the hospital with no phones or way to contact our friends and family.  I had no insurance information on me.  Mike was pretty resourceful and found a way to get ahold of his wife who contacted MacBeth.  The moral of the story is wear a RoadID with all your info on it including insurance.  On the back of your bib, write down any and all emergency contact information for that day.   Last, carry your phone.  Those little run belts don’t slow you down but could make all the difference in the world and can hold all of your medical information.

The next few years went by and the medication became less and less effective. I raced a few more times, including one half Ironman at Hawaii (that race has a few other stories including the time I flatlined in the finish, but you can ask me about that later). I continued to do as many active things as I could, running, riding my bike, racing a little track and cyclocross etc. but as time went on it was getting harder and harder to stay active.  During this period, I have to say that my community of friends rallied behind me in a way I would have never imagined.  They never stopped inviting me on rides or runs, knowing I may have to cut them short.  They were always there to catch me, come pick me up or provide a shoulder to lean on.

My friend Steve has the best sense of humor about it.  We were on a ride up to the Snoqualmie Falls, and at the top after a long hard climb I had an attack. There was a group of cyclists standing there, and they became concerned.  Steve just stood me up and supported me and turned to them and said “it’s OK, he’s just having a heart attack, happens all the time. He’ll be fine in a few minutes, you better get a head start down the hill or he’ll catch you!”  I love that man.  He never made me feel sick or less of a man.  He was always there to pick me up, help me recover, and put me back on my bike. Dignity is important.  When you live with a disease like this there is a huge emotional toll, and every little thing like that which helps preserve your dignity is priceless.  Thank you Steve, thank you Mike, thank you to all my friends … Ken, Katie, Mel, Mic, Josh, Shawn, Sean and the countless others.

I am saving my wife for a separate paragraph.  Most will focus on the impact a disease has on the person who has it.  Few stop to think about the impact the disease has on their spouse and loved ones.  MacBeth has had to stand by me every day.  She has watched countless attacks.  She has watched me suffer, become comatose, dumb, clumsy, etc.  All the while being powerless to do anything but give me a nitroglycerin pill or patch and help make me comfortable.  Through it all she has been my rock.  The toll it has taken on her is not insignificant.  The Ironheart Foundation is not just here to help those with heart disease but those impacted by it.  Our community enables spouses and loved ones to talk to others in their shoes.  They each have their own stories.

Fast forward to November 2014, my condition had gotten really bad.  I had gone back to the Mayo Clinic a few times, done full neurology workups and studies, endocrinology.  They left no stone unturned.  I called Dr. Lerman.  He informed me that they had conducted a study on several patients who had a terminal heart condition as well as a myocardial bridge.  In all cases found that the unroofing surgery provided them with some symptomatic relief.  We were out of medical options, and he felt it was time to put the surgery back on the table.  Dr. Schaff was also open to the idea.  Dr. Lerman would only let him perform the operation.

In the meantime, one of my best friends, Katie was experiencing massive complications from a surgery she had two years prior to remove her gal bladder.  We spent three weeks in and out of the hospital with her as the local doctors tried to understand what was going on and what to do. The most they could do was keep her medicated for pain.  I remember standing by her bed in the ER holding her hand as I hid my TIA’s and attacks from the hospital staff.

Finally, I had had enough.  I called my dear friend, Dr. Johnson, who had now retired from the Mayo Clinic and gone into private practice but was still closely tied to the clinic.  I explained what was going on.  He had her husband Nico and I take pictures of all the records and images and send them to him that night.  It was 11 p.m. his time.  He called his old surgical mentor, one of the most experienced liver specialist in the world.  They reviewed what we had sent that night and called me back.  He said they believed they knew what was going on that that she would be best served by getting to the Mayo Clinic immediately.  She needed a procedure that most would only do once or twice in their career, but Mayo did a hundred a year.  I put Katie and Nico on the phone with him. It was Friday night, and they decided to check out and get on a plane the next morning and fly to the Mayo Clinic.  That same day MacBeth was running the Seattle half marathon.  Yes, that race is cursed.  While she was out on the course, Mel and I were sitting in a coffee shop in downtown Seattle when I felt something different, something felt like a gummy bear get stuck in my heart followed by a huge attack.  After the race we went home and things got worse in a hurry.  We called the Mayo Clinic and Dr. Johnson.  They said I needed to get there ASAP and made plans to have the surgery done locally if it got critical.  I booked a ticket for the next morning and the wait began.

I picked up the phone and called my old friend, Dave Watkins. I was going to have open heart surgery. I needed to talk to someone who had been through it.  At 11pm he sat and talked to me for over an hour, answering all of my questions and assuring me it would be okay.  Dave also challenged me.  He knows me.  He said, “You are going to get that surgery, and you are going to walk out of that hospital on under your own power in three days.”  He wasn’t done.  He said if he could run a half marathon three months later so could I.  Those words were some of the most important that have been spoken to me.  They reminded me that even though I was sick and my body was failing, I was tough.  I was stubborn and most of all I was a fighter.

I made it through the night, and MacBeth put me on the plane the next morning.  They only had one seat so she and my dad would follow the next day.  I got to MN and Nico came down to Minneapolis to pick me up.  How convenient!  LOL.  I met with Dr. Lerman that day while Katie had a few more tests run.  Things had stabilized a little so we scheduled the surgical consult for the next day which was the same day Katie had her surgery scheduled for.  It was important to Dr. Schaff to have MacBeth with me.

While I met with Dr. Schaff Katie went through a very long and complicated surgery.  Dr. Schaff agreed to do the surgery and explained why it was not just a simple incision.  He was going to have to cut blindly through the heart muscle and trace the artery down to the artery but without nicking it.  Hmmmm … I hadn’t realized how technical that would was. He explained that when he replaces a valve or does a bypass he cuts where he cuts and sews where he cut. This put things in perspective, but I was confident I was in the best hands possible, and we agreed to operate.  Now the question was when.  Most other hospitals would have to check their schedules, and you would be lucky to be cut in the next couple weeks.  But, he said, “How does 6am tomorrow sound?” Hell yeah!  Let’s do this!

We visited Katie in recovery that night, and I went to sleep at the Johnson’s anxiously awaiting my surgery in the morning.  We got to the hospital VERY early, and I’m not a morning person!  LOL.  My dad and MacBeth were with me as we went through the process. It was time to say goodbye. I gave them both a big hug and the last piece of personal clothing that I took off was my old Army operator cap for those of you who know what that is.  It was my symbol of strength.  I went in to pre-op, and they started hooking me up.   Then, I was out.

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Meanwhile, my dad and Mac went from one waiting room to another as the surgery progressed being updated along the way. They estimated that there were at least twenty other people having heart surgery that day.  They received the update that I had been put on bypass … wait what? We forgot to talk about that.  My wife and dad all but went into tears at the thought that my heart was no longer beating and that a machine was breathing for me.  It makes sense.  They don’t want to make a delicate cut on a beating heart, but still. I’m glad I was out for that part.  It was very long day for them.  The message came through around noon that all had gone well, and she could see my vitals on the Mayo Clinic patient app. Yes, their app is something out of Star Trek.  They closed me up and moved me to the ICU where my wife and dad could see see me.  At this point, I wasn’t exactly in the clear so they kept me sedated for several more hours.  I am told the first nurse was amazing, but I never got to meet or thank her.

They brought me out of sedation.  I don’t remember much of that night as I was still on a lot of pain meds and very cloudy. Apparently, one of the first things I asked for was my hat.  Funny huh?  But, it is little things like that which can make a scary and tough situation just a little bit better.  I spent the night in the ICU, all the time very confused by where they were putting the bed for Mac and my dad.   They kept disappearing behind me!  Within every hospital room that I have ever been in, the bed was against the back wall so what magic was this? Turns out I was in the middle of a HUGE room.  LOL. We got a good laugh out of that later when they showed me pictures.

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Finally, I was moved down to the recovery floor the next morning.  In a little while Nico put Katie in a wheel chair and wheeled her over for a visit.  I will never forget that hug. We had both been through a lot and still had more to come.  But, we were lucky enough to have each other and some amazing family to support us.  Nico then said “Hey that blanket doesn’t look very comfortable.”  He had gone to the store and bought me a fleece Avengers blanket.  Once again, a little thing that made such a HUGE difference.

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At this point, any cough or heaven forbid sneeze caused mind blowing pain in my chest thanks to the fact that they had sawed my sternum in half and bound it back together with titanium wires. The heart pillow that they give you to hold to your chest is a nice gesture, but it is not very soft. I asked MacBeth if she could find me something better.  She went to the gift shop and found a pillow pet. The selection wasn’t very big so she returned with a purple turtle pillow pet.  Everyone laughed at the tough old man and his Avengers blanket and purple turtle pillow.  But, they were a God send.

It was time for my first walk, and I had been looking forward to this all day!  How hard can this be?  Let’s go for a jog!  HAHAHA wrong.  My nurse stood me up with my walker with two drainage tubes coming out of my chest into two suitcases to hold the fluid.  They were attached to the walker along with all my IV’s wires etc.  I started to put one foot in front of another.  I made it a little past the front desk maybe fifty feet.  That was the longest fifty feet of my life and took everything I had. We turned around and I struggled to make it back to the bed, exhausted.  This was humbling, ground zero.

Throughout the day I worked on doing my breathing exercises and got up to walk as often as I could, getting a little further each time.  Mac had gotten me soft fuzzy colorful socks to help.  LOL!  I was quite a sight, but by the end of the day I made around the ward.  That night was a long one as I went from freezing to a cold sweat and back and forth. I woke from a terrifying nightmare at one point with no idea where I was thinking there were ghostly things flying through my room.

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The morning brought a new calmness, and I was determined to continue to make progress. Dr. Lerman came to visit and was very optimistic about how everything went and my recovery.  I was set to have the drainage tubes taken out that afternoon.  I went for a couple more walks before that.  I was really looking forward to getting those Home Depot looking tubes out of me!

Normally, removing the tubes is a pretty simple and painless procedure as the simply pull the tubes out and place a bandage over the stab wound. The first one located bellow the rib cage came out no problem. Hey, nothing to worry about!  The second one went between my ribs and behind my heart. As the doctor took hold of the tube and gave it a tug suddenly everything went wrong.  I was lifted out of the bed, overcome by some of the worst pain I have ever experienced.  There was a momentary pause as we looked at each other in sheer shock.  She lowered me back to the bed and slid her hand down to my chest and shouted to the nurse to get as much dilaudid as she could immediately.  I gripped the bed as tightly as I could and put on the most stone cold stoic face I could as not to panic the doctor.  That took every last bit of internal fortitude I could muster.  My thoughts went to men wounded in the field knowing this was nothing compared to what they must have felt.  I was not going to do them the indignity of caving to the pain.

They quickly wheeled in a portable X-ray to get a picture of what was going on. The tube had twisted behind the ribs and was stuck. The doctors went back to another room to review higher res images from earlier to determine which direction the twist was, they were going to have to “unscrew” it.  A second doctor came in, a big man with a bit of a surly bedside manor, which was good.  LOL.  I did not want the first doctor to have to try again. He gave me two tongue depressors to bite down on and said hold on as tight as you can. I’m not going to sugar coat this at all it is going to be slow, and it is going to hurt.  He was right, he gripped the tube and slowly began to twist it out between my ribs as the pain cut through all the drugs.  But then it was over.

After I recovered, it was back to walking.  I had a goal.  Katie was not far away in a connected building.  I was going to walk over and see her.  Now free from my tubes and walker, MacBeth took my arm.  We started our journey.  I had to stop several times, but I made it!  It was great to see her.  After a short visit, we headed back. When I got back to my ward there was a little girl outside my room in the hall who had just had open heart surgery. We stopped to say hi.  She was very frightened, but then saw my socks and smiled!  I asked Mac to go get my pillow pet.  She smiled again as she hugged the soft turtle.  Mac told her dad where to get one downstairs.  That little girl gave me another boost of courage.  That night was much better.

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Day three came, and I got to take my bandage off and take a shower!  Thank God, I stunk! As I pulled the bandages off, I stood and looked in disbelief.  After spending countless hours looking up images of zipper scars I was prepared for the worst, but what I saw was amazing, a beautiful, straight thin incision.  I recalled a conversation I had had with Dr. Johnson the night before my surgery.  So a little more about him.  He is one of the world’s foremost leading reconstructive plastic surgeons and former chief at the Mayo.  I had asked if he still had surgical privileges at Mayo and if he would open and close me.  He replied that sadly he did not, but that I would be in good hands.  I called Craig and almost wept as I thanked him for calling in a favor.  He denied it of course.  🙂

This was it, day three.  I was ready to meet the first of Dave’s challenges.  To Dr. Lerman’s surprise, I was ready.  He signed off on the paperwork.  The other doctors and nurses brought us all the paperwork and gave us the usual instructions which included no lifting anything heavier than a milk jug for two weeks and no running for 6 weeks.  Man, that was going to be tough!  LOL.  I walked out of there and headed straight to Katie’s room.  We hung out there for the rest of the day.  We have lots of interesting stories there, but I’ll let Katie tell those.  Finally, Mac and I got on the plane and headed home.

It was good to see my cats again and be home. Lucky for me a year before I had undergone two back surgeries to deal with a ruptured disc in my lower back, and we had purchased an adjustable bed and ice water machine.  Two more things that were HUGE in my recovery. They usually tell you to spend the first two weeks in a recliner day and night but that is horrible!  That bed was the best!  The cats were always by my side giving me tons of love. My friends all came to visit and Mel took me on a few short walks along the river trail by my house.  It was good to be outside again even if I was just able to walk.

Two weeks went by and I was walking and as active as I could pushing my rehab.  But man, my ribs were all out of place and collar bones were popping in and out like a high school skeleton. They couldn’t put any pressure on them to put them back in place until the sternum had healed in 8 weeks.  So, I would have to deal with it.  Week two came and everyone had to go back to work, and I was home alone.  This is when the depression and anger set it.  Yes, it is an all but unavoidable side effect of a major surgery. Doctors don’t prepare you or your spouse for it.  I will save that for another day but be aware it will happen.  You may even want to just give up.  You will ask “why me” a thousand times. But those long days will be over.  It will seem like forever but they will pass.  Days will soon become weeks.

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Week three came, and I decided that I was done with the resting.  It was time to get to work training for that half marathon!  Step one: I called my friend and trainer, Shawn ,and said “I’m coming into the gym.”  Everyone thought I was nuts, but I trusted Shawn. We started with the baby dumbbells and did mostly balance work standing on the bosu ball and single legged step ups.  I couldn’t believe how far that I had regressed.  I was starting from absolute ground zero.  But, I was up to it, and I had all the support in the world. My chiropractor/body mechanic, Dr. Perkins, worked on me several days a week.  He has been a HUGE supporter of the Ironheart Foundation over the years and a dear friend.

After a couple weeks, Shawn had me literally standing on a swiss ball doing squats, something I had seen the “real” Wolverine, Hugh Jackman, do in a video training for the movie.  Shawn did a great job of finding creative ways to build back my strength and balance without endangering my sternum.  He was patient as I had to take breaks.

What I had discovered was that not only was I starting physically from scratch but after 40 years my heart had to completely relearn how to supply blood to the body.  Before the surgery, I had been operating on a drastically reduced blood supply.  In fact the doctors estimated that above 115 bmp the artery did not have time to re-open and was completely closed off.  Now, it needed to re-calibrate.  This would take time.

Six weeks finally came and it was time, I could run!!!  I met with a large group of Ironheart folks at the Watershed, a local trail system.   We all set out for a short run.  I am sure I went out a little too fast but it just felt so good to run again!  I had to stop and walk all the hills, but I made it.  This was a huge day. I was on my way to reaching my goal.

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It was just shy of three months, and I had gotten my runs out to about 11 miles, not fast but strong.  There was a local half marathon, and I decided it was time.  The race started, and the first 7 miles were mostly downhill and flat.  I was doing great, until I hit the hill to climb up to the trail.  I had to walk it, but that was fine.  I had been running way faster than I thought.  I got to the trail and started running again.  I had to slow it down a lot and was getting tired.  MacBeth passed me about mile 9.

Shortly down the trail I saw her standing there waving and calling my name, there was a man on the ground.  I ran as fast as I could to them. He was laying there in massive tachycardia, probably about 220 bmp. He had his iPhone on him. I grabbed the phone and pushed the button for Siri. I asked, “Siri, who’s my wife?” Siri replied with a name so then I said, “Siri, call my wife.”  Siri dialed his wife’s number.  She answered the phone short of breath and said, “hello?”  She was a mile back doing the run.  I told her what had happened and asked if he had any medical conditions.  She said none that she knew of, but he hadn’t eaten properly.  I hung up and called 911, and they headed out with a gurney on the trail as fast as they could.  Meanwhile we elevated his feet and made him comfortable as I performed a sternum rub to snap him out of his convulsions followed by gentle artery rubs on the neck and an ER nurse had stopped to assist.  The paramedics and his wife got there and took over.  Mac and I decided to finish the race, so she ran by my side as we slowly finished the last 3 miles.  We crossed the line together as tears ran down my face.  I had done it!  I had met Dave’s challenges!  I called him right away to tell him. That day I didn’t just finish a race, I proved to myself that I was going to beat this and that I would still be able to live a good life!

Dave’s goal post surgery was to complete his first Ironman.  It took him two tries but within a year or two he had done it.  Now I had already finished two full Ironmans and several half, including the 70.3 World Championships.  But that was next on the list.  I wanted back. Over the last few years MacBeth had been on a storm completing multiple full and half Ironmans, and I wanted to do it one more time, just to do it. We looked at the calendar and decided how about the 70.3 in Los Cabos, Mexico?  It would be a great vacation, and it can’t be that bad … Well we’ll get to that in a minute haha.  We talked our good friend, Rosanne, who had just finished her first Ironman and become a great training partner for both MacBeth and I into doing it with us.

October came around and I had built up a new tri bike.  It had been several years since I had ridden one.  Rosanne, her husband, Allen, Mac and I headed to Mexico for the race and nice week long vacation.  As it would turn out Rick Armiger, Dave’s best friend and long time Ironheart member, was going to be there racing the full along with Mac.

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So maybe this wasn’t the best choice for my return to long course triathlon. A hurricane had just passed through the gulf causing HUGE swells in the ocean and water temps to rise to 87 degrees.  The bike course profile was completely wrong.  What looked like a relatively flat ride along the coast with a short climb up to the airport and back turned out to be all hills, either up or down (LOL) and the most elevation gain on the Ironman circuit.  The temps were in the upper 90’s.  Oh boy!  Rosanne and I were doing the 70.3, and our bikes ended up being racked right next to each other.  It was a progressive self seeded rolling swim start so we decided to start together and a little ways back.  Mac and Rick would start after us doing the full.

We dove in the water, and it was on!  The swim was tough and took much much longer than I had anticipated.  I climbed out of the surf and made my way to my bike, I saw that hers was still there and suddenly I hear a familiar voice, “Hey Kyle!”  It was Rosanne, right behind me.  She was kind of rushing things and a little nervous.  I was happy to see her and said, “Hey, slow is smooth and smooth is fast.”  We donned our shoes and helmets and walked our bikes to the mount point. The bike started with an incredibly steep climb to get up to the highway, and I told her to down shift and relax and just spin. We got up the the highway and headed out in our brand new Ironheart Foundation kits.  I would pull away on the descents, and she would catch me on the climbs.  At one point she threw her chain (she does that a lot LOL), I grabbed the brakes and being the bike mechanic.  I had her hold my bike and quickly got her chain back on so we could continue.  As we headed back from the turn around, the day was starting to take it’s toll on me.  I started to slide backwards in the field, but Rosanne was having a great race and rode on strong.

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As I worked my way up the very long and steep climb, I saw her coming down.  She was killing it!  I couldn’t wait to get to the descent.  LOL. Finally, I made it and just laid down on my bike and let it fly.  I felt that while I may not have anything left in my legs or body; I could still go downhill like a bat out of hell.  🙂  I made it into transition and took my time changing into my run shoes. I left the tent and started a easy jog.  I knew in the back of my head that at this point my day was pretty close to over.  I pushed on for a few miles and saw Rosanne, and we high five’d.

It was at mile three that I knew I was done, but I couldn’t find any adults or staff at any aid stations to “surrender” too.  I kept walking until I collapsed.  A spectator called the police and ambulance.  The race staff had no idea, and I didn’t speak much Spanish.  My blood pressure was through the roof, and they insisted on taking me to the hospital. I took several hours to get hold of the race officials and get word to Allen and Rosanne, who had finished at this point that I was okay.  They put me in an ambulance and took me back to the finish.  Rosanne had indeed killed it!  She went on to win her age group and earn a spot at the 2016 70.3 World Championships.

Rosanne was not just a training partner.  She had become a part of our daily lives and part of my immedate family.  We have this sibling like rivalry, always pushing each other. Anything I jump off of she’ll jump off, even if it lands her in the hospital!  When we would run or ride she always pushed me.  This was huge!  Never once has she treated me like I was sick.  I could not have asked for a better friend to share that day with.

We went back out on the course to cheer on Mac and Rick. It was a tough day but both were doing amazing.  MacBeth went on to PR that day under the most grueling conditions. We spent the rest of the week relaxing on the beach, riding horses, snorkeling and learning to surf!  I decided that before we left I was going to go out and finish my race. I had 10 miles left to run. So by myself I went back out on that course and ran the last 10 miles.  The outpouring of support from my friends and on social media was amazing.

A lot of things went wrong that day on the race production side.  It was a literal shit show as none of the port-a-potties had any toilet paper.  To make it up to me for not having the necessary support out on the course in time and to give me a chance to complete my goal of finishing a 70.3 again, they offered me a free entry to the Monterrey, Mexico 70.3 in March.

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And so the story continues.  I have been battling through the tough winter months trying to get in as much training as I can as well as enjoying one of my favorite activities, skiing.  I still struggle daily with my disease and have good days and bad days.  I have good weeks and great weeks.  A few months ago a friend, Julianne, told me that she was so inspired by the way I was not only surviving with heart disease but thriving with it.  Those words are amazing and have become my new challenge and mantra. Thank you, Julianne!

Thank you to all my friends, family, doctors and the cardiac community at large. I hope that I can inspire and support others as you have me.  We are all in this fight together.

Don’t just strive to live with your disease, thrive with it!

– Kyle Watson, Redmond, WA