A Story of Survival, or how Iron Butt rides saved me.

rebelmark

Premier Member
IBA Member
#1
The lead up to my surgery in March 2019 was pretty unique compared to my previous surgeries. I was feeling good; in December 2017, I went to my annual cardiology checkup at Stanford and the news was all good. Valves were working great, rhythm was normal, and I was all set for another year. Now, I have been on the other end of these appointments too; I remember my last appointment with my electrophysiologist a few years prior when he informed me my heart was out of whack; as someone with congenital heart disease, you expect the bad diagnoses once in a while, but it doesn’t make it any easier to hear them. However, in my case a great diagnoses is rare so I was extremely happy. I felt strong and resilient. As 2018 began, there was no moping around, waiting for a procedure that always seemed to occur between February and April.

As I enjoyed my hearts stable health, I got the urge to be somewhat adventurous! You see, when you have Congenital Heart Disease, you find yourself having to put things on hold. While you’re waiting for a procedure to fix a problem, the mind tends to want you to stay close to home, in a safety net of sort. I hate the word afraid, but that is the word required here. When you know something is wrong with your body it makes you afraid to some degree of what could happen if you venture outside the envelope.

However, in the Spring of 2018, there were none of these fears. I decided to do some things that I believe were pre-ordained to help me for one of my greatest upcoming challenges. Of course, at the time I had no idea what this was, just that I had a period of time where I felt strong and that I could accomplish anything.

I’ve always rode motorcycles since I was 19; the time between September 2017 and February 2018 was the only time since 1995 when I had not owned a motorcycle. I had thought I would maybe retire from riding, but as the months passed by the yearning to ride came back with a vengeance. So, in February, I found a great deal on a touring motorcycle down in Orange County, got the cash together, and told the wife I was flying down to buy it.

I arrived in Orange County, picked up the bike, and rode the 367 miles back home, arriving before dinner time. Everything felt really good, and it was great to be back on the bike again.

I was familiar with endurance riding in the motorcycle culture, and I started reading more and more about it. I decided to do a Saddle Sore 1000, which is a 1000 miles in 24 hours. When I shared this idea with my wife, she immediately dismissed the idea. I believe the actual response was “Why do you want to do that, that is the stupidest thing I have ever heard of.” I was undeterred and came up with a route and a day to do it.

On a Friday in early May, I attempted this ride. The ride was a success and detailed in some of my other writings. Although I was apprehensive at first, deep down I knew I would succeed.

It was not long after I returned home from the first challenge that I decided to challenge myself again. If my family and friends did not thing I was nuts after the first challenge (they did), they would really think I was off with the 2nd. I was going to ride 1500 miles, halfway across the country, in under 24 hours. I was then going to sleep for 4 hours, get back on the bike, and finish at my childhood home; 2000 miles in under 36 hours. This ride required more planning which I did, and set off to do this the week prior to the 4th of July in 2018. Again, both rides were a complete success. The feeling after this accomplishment left me feeling like I could accomplish anything. I felt like there was no challenge I could not accomplish, no adversity I could not overcome, and nothing that me or my body could do. This was an important lesson to learn for me. In the past, challenging physical feats had put me into arrhythmia’s and caused me problems. There was none of that this time.

As the months in 2018 ticked by, I had a different yearning. I wanted to get in shape! One of the challenges with Congenital Heart Disease is that you are always in the constant loop that I alluded to above. You want to work out, but you have an arrhythmia. You do not have an arrhythmia, but man, if you hop on that Spin bike you might get one. It has happened to me many times before. The end result is that you are scared to exert yourself for the fear of what will happen to your heart. 2018 was different. I felt strong, and I finally felt that my heart would let me exercise without issues. I still felt like I could accomplish anything.

My neighbor is an avid spinner so as Fall descended on us, we talked often about joining Spin at her gym. My wife and I are very busy; we have careers and 3 kids we are raising. My interest was piqued in an ad I saw on TV for something called a Peloton. This allowed you to do spin classes at home, at your convenience, online! As a techie, this was right up my alley! The price tag was steep, so imagine my surprise when my wife surprised me with one for Christmas. I was anxious to get pedaling, however I must digress. It was in early December that my annual cardiologist appointment occurred.

My wife and I took the long drive to Stanford for the usual half day appointment. This required an Echo cardiogram, EKG, and a meeting with my doctor. After the tests were done, we were put into a room with the cardiologist and his nurse, and he relayed the news of my results. My heart, that was working so well last December, was now showing some signs of issues. My tricuspid valve, which had been repaired once and replaced once, was leaking above the threshold they had established. My pulmonic valve, oddly the one I have had the longest (since 1998), was still within range. Normally, this would require open heart surgery, but Stanford had started replacing valves with cardiac catheterization, which allows them to go up through the groin with a wire carrying the valves; the valves are moved into place, then expanded much like an umbrella. My doctor was confident that he could do this successfully, and I have had many cardiac catheterization in the past for ablations.

I have had a host of heart procedures in my life; in October 1979 at 3 years old, I had a Atrial Septal Defect repair and my pulmonic valve widened. After that, I was relatively good until 1998. In 1998 I was working as an ironworker, and found it very hard to get my breath during some rigorous work sessions. A trip to a local cardiologist ended up with me at UCSF discussing my second open heart surgery of my life. I had 2 valves replaced, but also ended up with a bad staph infection which required another stay for me in the hospital. It also introduced me to something I had previously avoided, and that was arrhythmias.

I battled arrhythmias from 1998 to 2007, which was the date of my next open heart surgery. By this time, I was being seen at the Mayo Clinic in Scottsdale as they had a strong cardiac program and some of the worlds best cardiologists. It was there I found out that my tricuspid valve was barely connected to my heart, likely a result of a previously botched ablation at a Northern CA hospital. I prepared myself for surgery and once again went under the knife.

In 2009, my wife and I felt that it was time to find another cardiac team closer to our home in California. We did some research and came up with Stanford, that had a program just for Congenital heart patients like myself. We made an appointment and started getting integrated into the program. The first stop was the cardiologist, who identified that I was back in an arrhythmia and would require an ablation and some medication to help me stay in normal sinus rhythm once it was fixed.

Fast forward to December 2018; my diagnosis was unexpected, and although I was not surprised, I had an unusual amount of anxiety related to this procedure. My sleeping was terrible and I was worried all the time. My heart was still functioning well and I felt good, so I started spinning on my Peloton. I tried to spin at least 4 times a week. I pushed myself hard; in the beginning, it was so hard to stay with the pace of the instructor considering this was the first exercise I had done in years. However, as I progressed I got stronger and stronger. My legs got stronger. My heart and lungs got stronger. My wife would try some of the same classes I had completed and had a heck of a time completing them at the same rigor as I had. As I got better, I did more challenging rides, out of the saddle climbs, all the while singing at the top of my lungs to the playlists that day and generally enjoying myself. During these 3 months, I pushed myself to do better and better. As March 4th approached, it was unknown to me how important this would be.

The week prior to the cardiac catheterization I was a jumble of nerves and emotions. This was different than previous events where I usually had a can do attitude with a little bit of No Fear mixed in. I remember telling my wife late one night when I couldn’t sleep that I didn’t want to die. Then, on the Saturday before my procedure, I received some heartbreaking news. My grandmother, who I was very close to and had such an important part in my life, had passed. She was a 100 years old, but as anyone knows, that does little to soften the blow. I spent so much time with her growing up; she taught me so much about life, love, and how to treat others. I was devastated to hear this news.

I then had a decision to make; do I postpone my procedure to fly to Wisconsin? Do I have the procedure, recover for a few days, then fly to Wisconsin on Thursday in time for the funeral on Friday? This is what was decided. We conferred with the nurse and made the decision that this is what we would do. I have had catheterizations before and my general experience was that although I was groggy for a few days after the procedure, I was mobile and generally in good shape in a short amount of time.

A couple of days prior to the procedure, the nurse in charge of my case mentioned that there was a slight concern about any beds being available in ICU. This is important later; she mentioned she would talk to the surgeon and anesthesiologist and let me know. We were instructed to call her the day before the procedure to check on bed availability; we did and learned there was still no guaranteed spot. We decided to drive to Palo Alto on Sunday night to our hotel room, and check with the nurse on Monday morning. Monday about 9:30am we received confirmation there was a bed available. We drove the 10 minutes over to the hospital and checked in.

After about an hour, they wheeled me back to the catheterization lab. There were no surprises; they got me set up on the bed, injected me with some meds to calm me down, and then began the process of knocking me out. My wife always makes fun of me and calls me a junkie because I enjoy the minute or so of euphoria before you finally go to sleep from the anesthesia. I say, hey, when you have had as many procedures as I have, you have to find some positives! Little did I know this would be the last time I was conscious for 3 days.

When I finally woke up I was in a darkened room. I couldn’t hear (my hearing aid batteries had failed over the 3 days), I couldn’t talk (intubated), and I had no idea where I was. I have had some scary things happen in my life but this about topped them all. My wife was nearby and came over to the bed as I woke up. I wanted to know if the procedure worked, if my mom knew, and if my kids and good friend had knew. I asked her what time it was. She said it was Thursday morning. That confused me further.

They finally removed my tube sometime on Thursday and moved me to a different room in ICU. I was able to speak better and gather more information from my wife. I was still extremely groggy, but not in pain. I asked how the procedure went and she said there were some problems. At this point I had no idea what had transpired the previous days.

As I spoke to my wife more, the details began to come out. My procedure was close to being complete, valves were in place, and as they were removing the wire my lung was punctured. I began bleeding. and by the time it was all said and done I lost 5 quarts of blood (the human body holds 9). In addition, my blood pressure could not be regulated. It was through the roof, then back down to barely sustaining my life. There were 3 times they thought they were going to lose me, but my team never gave up. My wife never left my side. I never gave up. I truly believe that my confidence and mental strength from completing those motorcycle endurance rides gave me the tools to survive. The spin bike strengthened my heart and lungs enough that when they were close to giving up, they were able to find the strength to move on. Everything happens for a reason. My Nana prayed religiously every day; I believe God took her to heaven before my procedure so she could rally the angels to give me strength and perhaps tell Jesus himself not to take me yet. I have strong faith and believe this is possible.

After a 7 day stay I returned home. My parents had flown in to Wisconsin a couple days before to support me. My emotions were all over the map; I was scared, anxious, and probably most important, happy to be alive. Being close to death does one thing; it forces you to analyze your life. I’m in the process of this, hoping to love more, and be angry less. To be thankful for what I have, and trying to figure out what I am destined to do with this second chance. I try not to think about the future, knowing that this will not be the last procedure, but now, wondering if my next procedure will be my last. I hope my strength and willingness to fight continue to persevere.

One night, when I was extremely agitated and floating somewhere between a full coma and walking up, my wife mentioned she saw me pedaling on the bed. I don’t remember this at all, but her account is that I was pedaling hard, like I was on my Peloton, giving everything I had. Maybe I was pedaling to live? Giving it every last ounce of effort like I had the previous 3 months. Not letting myself quit when it was certain the end was close. I was also surrounded by prayers from my friends and family. I believe this also played an important role in overcoming this. My goal now is to finish getting healthy and figuring out what I can do to help others in a difficult situation.
 

HACKLE

Well-Known Member
#5
rebelmark. Stay strong, believe and above all else, keep your faith. We don't realise how lucky we are to be fit and healthy till we read a story like yours. My prayers and thoughts are with you. Cheers.
 
#7
Wow!
That is an awesome read. Thanks for sharing your story. The good Lord is not done with you yet. Keep believing, trust in Him and all will work out.