• Cardiology Patient Stories

    Living the Dream – Part 1

Darrin Nelson of Rochester, NY, wrote this blog entry on Sept. 1, 2009, the day after he was released from Mayo ClinicSt. Marys Hospital following minimally invasive heart surgery to repair his mitral valve. This is the first post in a series of four. 

As a very active 44 year old male, I am extremely surprised to be writing this for many reasons. I'm actually sitting across the street from the Courtyard Marriot in a little park in front of Saint Marys Hospital, which is affiliated with the Mayo Clinic, on Tuesday, Sept. 1, 2009. You see, I was discharged from Saint Marys Hospital last night about 7 p.m., exactly 72.5 hours after having Dr. Rakesh Suri perform a successful minimally invasive, robotic mitral valve repair on me. It's partly sunny here and in the mid 70s, certainly not the nicest day I've experienced, but is definitely one of the most beautiful days I've been able to enjoy, with a mitral valve that doesn't leak anymore.

Darrin Nelson and friends on a boat.This is my story.

Happily married to a Sicilian for 19 years with almost 300 of her closest relatives living nearby, my friends and family are not surprised why I call Rochester, N.Y., my home. But when I broke the news to them that I was going to need heart surgery, they were all blown away. I have devoted much of my life to healthy living and nobody would have expected that I would have to endure this challenge, including me.

Up until a week ago, I was playing competitive soccer twice per week, and in the weight room twice per week, religiously. On top of that, I enjoyed martial arts, skiing, snowboarding, wakeboarding, waterskiing, quarterbacking the neighborhood football team of my son Ryan's 12-14-year-old knucklehead buddies (I use this as a term of endearment, obviously - I love the activities with my kids more than anything), coaching my 10 year old daughter Rachael on her continued quest to be the best competitive level 7 gymnast she can be, and my favorite summertime passion of adrenaline pumping, racing offshore speedboats on the amateur poker run circuit.

I rarely ate red meats, fried foods, and other fatty foods (which is really hard because I LOVE french fries). I was 182 pounds, 5'11" tall and continuously heard I looked 10 years younger than my age. With hair down to my shoulders, both ears pierced, and a traditional wardrobe of shorts and sweats when not seeing customers, many who didn't know me often asked how we afforded our lifestyle. After leaving IBM in 1996, I was very fortunate to start, build and sell three computer software related companies. I could choose any look I wanted, but I chose to please my wife's desire of not being married to a corporate drone.

I had a beautiful, devoted wife, and two healthy active kids. I was living the dream...or at least living my dream. You can imagine how devastated I was when my local cardiologist told me in January 2009 that I was going to need heart surgery. Seven years prior, my general practitioner (GP) noticed a heart murmur during a general check-up (my first in 20 years). I had my first EKG and echocardiogram in 2001, but still had no idea of what I was facing. I asked my GP if after these first tests I should be worried. She said for now, just continue what you're doing and every three years or so, we'll check again. So I filed it in the category of "doesn't apply to me," and continued loving life. Well, apparently in December 2008, it had changed enough to get her attention. She sent me off to a reputed local cardiologist who broke the stunning news to me.

I went through all the typical emotions before telling my family. First there was denial, then anger, then fear, then depression, then finally acceptance...all in the course of about a six-week period. I had been playing soccer multiple times per week since I was in the third grade. I had been in the weight room a minimum of twice a week since I was 14. "C'mon man - how could this be happening to me? I am living the dream. What did I do to deserve this?" were the thoughts that bounced around in my head.

In February 2009, I accepted my challenge and told my wife and parents (purposefully keeping it from my kids, other family members and friends until we had a plan). My local cardiology team recommended we delay as long as possible, as the science of minimally invasive technologies (in particular, catheter-based repair) was improving every day and would be around the corner. Avoiding splitting open my sternum sounded good to me. Just seemed way too catastrophic to the body. I was to continue my daily regiments, and get another echocardiogram within the year, unless I experienced shortness of breath and/or fatigue symptoms.

I began to do my own research. Finding forums like www.valvereplacement.com, and reading books from people who have been through valve repair, I was able to learn from people who survived what I faced. I remember reading this one book while I was flying to Las Vegas to present to 60 customers we were hosting there. The book was written by a gentleman who had traditional valve replacement done in his mid-forties. Before I knew it, I had tears streaming down my face. I read the entire book on the Chicago to Vegas leg, and was nearly dehydrated from crying the entire 3.5 hour flight.

At the time the two things that bothered me most were 1) the fear of the pain and duration of the recovery and 2) not being able to finish the favorite job that I started – helping to raise my children. Most of the tears came from the latter, as I knew there were good drugs for the former. I still remember the look on the guy's face who was sitting next to me on this flight. He looked at me with total confusion while he witnessed a grown man sporting trendy west coast Affliction attire and casual flip flops, looking like he shouldn't have a care in the world, crying the entire flight.

One of the things I learned from my research is that there may be a cost from me waiting to have my surgery done. There may be irreversible damage done to the heart while I wait, and I may not be able to be in as good shape as I am in now to endure the surgery and optimize my chances for a speedy, productive recovery. I had also learned that Mayo Clinic and Cleveland Clinic were ranked the highest in cardiac surgery. This was convenient. I had made my decision - I was going to seek a second opinion, and I was going to go to the best, even if my insurance didn't cover it. Fortunately, my dad, a retired IBMer, started his second career at Mayo Clinic in Arizona in Information Technology. On February 14, Valentine’s Day, I was going to tell my parents of my current challenge, and ask my dad for the biggest favor of my life - I already owe him a tremendous debt of gratitude, as he and my mother taught me most of what has allowed me to live my dream –but I still had to ask this favor.

It was very typical for me to call my parents on Valentine’s Day to catch up and wish my mother a happy Valentine’s Day (she gets very upset if my brother and I don't call on "her" days). Except, this time there was no small talk. With my wife sitting next to me on speakerphone, and my parents on their speaker phone, I said, "Hi, Mom and Dad. I have some good news, and I have some bad news. The good news is I am calling to wish Mom a Happy Valentine’s Day. The bad news is I've been told I need heart surgery." The funny thing is, I said it in about the same emotionless tone I would have if I was ordering breakfast at Denny's. I had processed this for two months, and had already poured all the emotion I had out of me. So it was a factual discussion at this point - at least for me. My wife, Zina, through this whole process, always showed a solid exterior and "just knew I was going to be ok.” I couldn't see my parents’ faces so I didn't know how they were responding. I didn't even give them time to process this news. I told them what I had and what I had learned. I asked my father to do some research, find the best valve repair surgeon Mayo has, and request an appointment with him.

Within about two weeks, I had an appointment with Dr. Hartzell Schaff. I immediately scoured the internet for everything on this guy. He was published and clearly recognized as one of the best in the industry. I used frequent flier miles and was on my way to Rochester, MN, to see Dr. Schaff in April without even checking if my insurance company would cover this at Mayo Clinic.

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