Gleason's Mojo
Posted on FB this morning - posting here for the team
Not sure how to write this. It is possibly the most painful thing I have written. A different version of this went out on Friday Night, it was a lot harder to read, fortunately since then, the understanding of my diagnosis and what I can and cannot do have improved
If you chose to stop reading here for lack of time or interest, please do one thing and one thing only if you are an athlete, casual runner, whatever, go to a cardiologist THIS week for a “check the box” checkup.
In the last four years I lost a cousin to a sudden cardiac arrhythmia, a friend from my triathlon team, Endurance Nation died in the last ¼ mile of the Philadelphia Marathon & a neighbor I did not know climbed out of a local pool after his swim workout and dropped dead. These events combined with my own father’s death at age 62 of Coronary Heart Disease recently sent me to the counsel of a local cardiologist & friend who has completed Ironman Lake Placid 2x.
The initial screening on Tuesday showed an abnormality in my EKG, an Echo Cardiogram on Wednesday showed a potential abnormality of the heart called hypertrophic cardiomyopathy, a genetically derived condition that is heightened by exercise and endurance sports. 99% of the sudden athletic deaths you hear about are from this silent killer. An MRI this morning confirmed it.
Triathlon & in turn, my online team, Endurance Nation, saved my life. I mean that literally. At the advice of a friend a few years ago (thank you Rob Keisel, and I mean it sincerely), I picked myself up off the floor of my post separation and at the weight of 206lbs, (I am now 170) began training for Ironman Arizona.
In August of 2010, I tripped across a video on Beginnertriathlete.com of two guys preaching Ironman Execution strategies, I visited their website (www.endurancenation.us) and my life as I have told this story before, changed forever. I found not only a coaching philosophy and training program, but an online community that soon became a group of friends many of whom I have met in person and still many of whom I speak with multiple times per week and consider to be some of my best friends.
I have looked deeply inside at myself while riding, running & swimming hundreds, if not thousands of miles and have shed most of the skin of a person I wasn't happy with. I have become a person that thinks nothing of throwing their bike on their car to go to a great spot to bike 80 miles one afternoon, and I have been fortunate to be the house guest of many a fine person and share stories, training tips & the joy of conquering a great hill with many of them virtually and in person.
Unfortunately, as these things go, I must now, hang up my bike shoes, my running shoes & my swim cap. While I am going to seek a second opinion on the matter, in the short time that has transpired since Friday, I have learned that in how this disease is measured (thickness of the ventricular heart wall) combined with the scientific tool of an MRI to measure it with, there is now doubt that a competent cardiologist who himself is an Ironathlete could get it THAT wrong, and truly, I do not believe in fairy tales. I know i will never again know the feeling of crushing a hill, of the joy in seeing the new vDot or FTP #, and of having to look on at others doing what i can no longer do.
This may be the saddest day of my life, a day where once again, dreams of a certain life must be cast aside and one must think of survival. I have over the last two+ years embraced a lifestyle of living healthy, eating healthy(mostly) and exercising. I don’t know how to live any other way(though as weight showed, I gave it an honest effort for some years). Those of you who know me and know me well, know I do not really know how to live a life of moderation, it is full speed ahead in a direction, diving head first into the deep end. Thus, living a life of moderation is not going to be easy. I have learned that I will be able to run & bike, albeit at relaxed levels of exertion that I will monitor as diligently as I have monitored my wattage & run pacing.
While I can no longer compete in an event like ironman or a marathon or a sprint triathlon. I have to redefine accomplishment. That being able to go for an easy run, or easy spin on the bike is something. I will have to live with the disappointment of not being able to complete what I started and continue my move up the Ironman curve. As my coach Rich Strauss has often preached, "This is only a game." It may in fact be only that, but it has become a way of life.
I do get to see my children grow up, I do get to feel the sun on my face (and yes raindrops too) While it is hard to look at what I am gaining, in one word, Life, I am overwhelmed by what I am giving up. In time, my small sphere will shift and I will regain the proper perspective. There were two blogs I found in my triathlon time, and both serve as great metaphors in life: “one foot in front of the other” and “left, right, repeat.” Better, one of the keys of triathlon execution is to "be in the box." The only thing in the box is what i can control, and therefore what i need to focus on now. How poignant at this moment in time.
For those of you that mourn & have mourned the deaths of loved ones mentioned in this note, please know that they still live, that their tragedy has allowed at least one person, me, to live. For anyone out there who participates in sports, no matter what your age, Walk (don’t run), THIS week to a cardiologist and “check the box.” Statistically speaking most of you, if not all of you, will be ok. For those that aren’t call me, no matter the time on the clock, we will help each other through this.
My Current Signature line for the forums of Endurance nation was a rip off and enhanced version of anothers. It simply reads the following: 2012 Goals, Ancona's Speed, Truscott's Guts & Gleasons Mojo.
Chris Gleason is my teammate who died, he like my cousin, Ken Kresch, was a guy who loved life and lived that love to the fullest, they both have amazing children and married amazing women with whom they had the sweetest relationships i saw, they approached the world with a warmth and deference that was universally acknowledged. As i have tried to become a better person, i think often of what would Gleason do? It is only now writing this that I made the connection that Gleason & Ken were in fact cut from the same cloth. I now must summon their strength, their positivity, and think of what they would do if they had the good fortune of receiving their diagnosis while alive.
I know many of you will want to write me, call me, etc right away. I will be in the car from 7:30-9 traveling to Camp Chipinaw, it is visiting day today! I will be in the car again at around 4:30 for probably two hours with typical Catskill traffic.
Fondly
Scott
Comments
Scott -- I don't personally know you, but will keep you in my prayers. Keep the faith and thank you for sharing this.
I wish you the best as you wrestle with the next phase of your life and athletic career ... ... ...
sending you strength and well wishes.
We are all pulling for you, Scott. I am hoping for some peace and happiness in all of this for you. Happiness with your children and peace in knowing you will continue to raise them.
I'm grateful you are here and that we will have many more years of friendship.
You have all the support you could ask for. We'll figure out that thing called "moderation" and find a way to give it the meaning for you in your life that you need. The light at the other end of this tunnel will shine brightly!
Scott, very heavy.
Life/family is so much bigger than beating a 140.6 course. Every day counts, whether we're doing intervals or sitting on the couch watching a movie with our loved ones. Sands in the hour glass kind of stuff, ya know!
I have to counter with a thought, tho. There's a fine line, a happy medium, IMO. Hypertrophy, Ventricular Wall thickness, k....got it. Done, it's thick, it's dangerous. Can you guarantee me that something bad won't happen in the next 5 minutes, when we're moving furniture or chasing the dog or something? Again, just a thought, not trying to be an ass. Just let the shock sink in for a bit of time before you make All or None Decisions. And I'd say that the family history is more important than what's happening to those around you. The sad reality is that we're all getting older, so we see these tragedies much more often in our circles than when we were in our 20's.
Thicker heart wall--->trickier to keep O2 steady to it (the heart wall), which actually happens in between 'beats'--->so, HR control in this case is HUGE. Would want to really focus on being efficient with the lower HR's in training and racing. Yeah, might mean you can't crush a hill, win a sprint, compete for the podium, etc, but I don't believe that you HAVE to be done (with sports, in general, not necessarily Tri).
Staying fit, eating pretty well, having some 'release', all good for the heart. Being an IM stud, not a necessity.
And if continuing the swim/bike/run scares you (understandable, completely), surfing and fly fishing are pretty cool ways to pass some time. Don't know how? Well, it's never too late to learn. That's how we all got here anyways.
I'll keep you in my prayers as you grapple with this. It has clearly rocked your world. Hang with the fam for a few days, weeks, then see how you feel about it.
Good luck with whatever decision you make!
Thank you for sharing this. I am sending you a vurtual hug. I miss Chris G every day and think of his wife and kids and imagine their loss. I believe Chris too would have made the decision you are making. Like Chris Hardbeck said above- look into what you can safely do. There are so many wonderful and fun things in this life besides slaying ourselves in a workout
I'll be praying for you to find peace in this.
Carrie
Greg
I am so sorry this news is yours -- can't it be that anonymous other guy? You are the smartest person I know for getting tested and the bravest for knowing that you have to deal yourself out of this uber-triathlon game. I remember reading somewhere that the healthiest course of exercise for was twenty minutes of moderate cardio per day and maybe some yoga 1/2x/week. You could very well outlive and out "health" all of us here. {{Hugs}}
Scott, Sorry to hear this news, but as others have noted - let it sink in before making rash decisions. Applaud your seeing and setting of clear priorities. Hang in there. Thoughts with you.
Tim
PS -- Next time to see Rob, tell him I said hello. I've known him for >25 yrs. We roomed together 3 yrs in college and were team-mates for 4. He told my IMLP finisher photo in our 2004 holiday card was among the motivators for him getting into the sport -- Small World!
PM me regarding brevets; ultra-distance, self-supported, time limited cycling events. No end to the challenges and your "weaknesses" may very well turn into exquisite strength.
Thanks for this post. My PCP for the past several years happens to have been a cardiologist, and just last week I got a letter from him saying that due to health care industry changes, he has to stop being a PCP and focus on cardiology. So while I now have to find another PCP, reading this post prompts me to give his office a call and ask him specifically about whether my EKG from last year showed any signs of hypertrophic cardiomyopathy or anything else of concern (I'd hope not - he knew I was endurance training, so the fact that he didn't mention anything makes me think there was nothing of note).
I've often wondered, in cases where people just suddenly drop, if there is an underlying reason. Thank you for providing this information, and giving me something more specific to inquire about.
While it must be a tough decision for you, I applaud you for making the right one in giving yourself a chance to back off for the betterment of the rest of your life. You can always change your mind later if circumstances, for some unknown reason, change.
While I commend you for addressing this, and further agree that 'this is a game..." triathlon, for many is a safety net and release (translation - therapy!) that can't be found via support groups, 12 Step Programs or with the help of a therapist. I don't know you well - other than having the pleasure of sitting next to you at the team dinner during the 2012 LP Camp. I do, however, recall you sharing that triathlon was, in so many words, a source of strength while dealing with family issues. I applaud you for recognizing that which the sport of triathlon has brought to you - don't forget... you have shared just as much, if not more, with the spot of triathlon!!
My thoughts and prayers are with you, as you navigate thru a difficult challenge.
Hope to see you in LP -
I had conversations with two new cardiologists as well as with our own Terry Olivas (cardio Thorasic surgeon) and Stephanie Stevens (well informed, knowledgeable pediatrician who is very familiar with this disease) i am going through the Q&A, i am moving forward with further testing and I am going to end up visiting either the mayo clinic or the Cleveland clinic. I think i just have to accept the diagnosis and learn how to live with it. I am optimistic that i will have a life doing my adventures, etc. I was read some articles on the way back after a top cardiologist at Johns Hopkins who is the cousin of a friend, pointed me in the way. But it is quite interesting what happens to the body during an ironman. I think for my own sake, while i am going kicking and screaming, it is time to go.I wish there was an EN social board, so i could hang out and chat with all of you...I know there are some life long friendships here.
I am hopeful i will be able to do the American Zofingen Short Course next year, as that may be an encouraging goal, we'll see.
Wishing you all the best Scott! Thinking of you!
Good luck, Scott. If it's your decision, then it must be the right one.
For all of the rest of you, keep the following thoughts in mind:
1. No one here, and potentially not even any one in his family, knows whether Chris was having heart disease symptoms prior to his unfortunate and untimely death.
2. The risk of dying in a triathlon has been estimated at somewhere between 1 in 25,000 and 1 in 200,000
3. I have spoken to Scott on the phone. He has no heart related symptoms. He chose to go be checked out by a cardiologist and to date, his workup has shown findings that I would guess would be found in differing degrees in thousands of 3-time ironmans. I would never discourage someone from being checked out by a doctor prior to ironman level training, but keep in mind that if you do not get chest pain, diziness, progressively worsening shortness of breath, or other concerning symptoms doing a 4 hour training ride, then it is extremely unlikely that you have symptomatic hypertrophic cardiomyopathy.
4. Coronary artery disease, a completely different problem which can lead to sudden death from heart attacks (which cause fatal arrhythmias), cannot be definitively diagnosed with a non-invasive test. It requires invasive cardiac catheterization. Scott has not been suggested to have coronary artery disease, but he, just like all the rest of us, could still have it, and a negative non-invasive test (like a stress test) does not definitively rule it out.
5. Medical tests have "normal" values obtained by analyzing the results of tens of thousands of studies across a huge distribution of people, most of whom are not ironman triatletes. The heart is a muscle not unlike all the other muscles in the body. When it's worked out a lot, it gets bigger. It has to in order to allow the body to exercise for 8-17 hours straight. There isn't such a test, but if you measured quad muscle mass in any ironman triathlete (like Scott), it would be considered "abnormal" because we all have more quad muscle mass than the general population.
If you go to your doctor asking for testing to "check the box", there very well be findings that are considered "abnormal", but that are not necessarily clinically relevant. Be sure you know if you do, you may very well need to face the choice of what to do with those results, just like Scott has.
Since my call with Terry yesterday, i have asked a cardiologist the points Terry made to me. The answer I got had to do with how my heart works differently. It all didn't grow in a way that suggests it is an "athlete's heart" and therein lies the difference. The heart of a hypertroph (as the club i am now a member of) is not the same as the heart of an athlete (I will post why later this week).
Trust me, i am not just taking my docs word on this, i am searching for answers and understanding.
In re-reading all of the gleason threads yesterday, i was blown away by the number of people that felt if they were going to die, they were going to do it doing something they love and with a smile on their face, just as we know Chris did. If nothing was "wrong" with me, i totally subscribe to that philosophy. Now that i have been told there is, i can't do that.
Half of why i do what i do is to show my kids that there are worthwhile passions in life, that sitting on the couch playing xbox all day isnt one of them. One of my kids has already taken up tri this past May. At camp yesterday she was reporting to me that she is in a contest to swim as many laps as possible all summer, that she is up to 30 lengths of the pool now. Her fraternal twin sister, isnt taking it as seriously, but wants to try it, she has even been open to swim lessons with the guy that rebuilt my stroke, i think she wants to do this for the cool gear, which she probably gets from me.
There are many divorced fathers that check out on their kids. I bask in mine. I fought to have more time with them from the outset than I was originally given. I have often taken some combination of any 1-3 of them for special unscheduled nights with me. Benna and I have forged a new friendship, so much that we have both heard the rumor floating around town for months is that we are getting back together (we are not). I often when I have nothing happening on a weekend day will be at benna’s house just chilling with the kids. My "one thing" has been that i remember the horrible first night i spent out of my house in an apartment after getting separated. The first night i could not hug and kiss my girls good night. I never felt pain like that again in my life (until now). That pain went on for months, i never knew when it would end. My one thing is knowing that the pain i feel at the end of an IM marathon is going to end in an hour, 45 minutes, 30, etc...
Now again, i know THAT pain, i have woken up at 5 in the morning every day and start crying, literally kicking my feet and punching at the air, screaming about how unfair this is. I know there are things i don't know about how Hypertrophic hearts work differently than athlete hearts, and i can't imagine putting myself purposely in front of danger. The chances of me being the guy that shows up on the news real is much greater than for the rest of you. THAT is the issue.
For me, the pain of yet again, giving up something i love, not of my choice, is difficult. Yesterday a friend who grew up next to me and now does IM (her and her type 1 Diabetes husband do these together and will be at IMMT) commented to me that i have gotten through a rough childhood, the death of a sister, father, continue to manage a difficult mother, survived financial ruin, divorce, and that i will survive this.
There comes a time where you lose your will to fight, i keep thinking that, but clearly i have not. I wouldn't be here looking for answers, writing all of this, calling various cardiologists and filling this forum.
Thank you ALL for the supportive messages and intellectual dialogue.
Please keep me posted on what they recommend for your treatment and how you are doing in the months to follow.
Scott - Ive been off the grid since I talked to you on the phone last week (doing a monster bike weekend and staying @ a condo with no internet). I'm impressed by the depth of your self-assessment and honesty about what's important to you. Sail on!
Scott,
I applaud your courage and your ability to reach out and to share. I could never do that.
Your words about your devotion to your kids hit home, as did the finances. I have had a very similar experience, sans the friendship with the ex, but I keep trying, for the boys.
Your path is emotionally hard, harder than any endurance event and may get even harder. There is nothing like the pain you're experiencing, I know. But for all striving we do, all of the goals chased, I truly believe that it's not what we achieve in life that matters, it's what we overcome. I hate to toss a cliche like that out there, but for me it's a truism.
Your relationship with your children is gold. Being there, for and with them is by itself a good life. You're walking the path of the hero. It isn't fun and it isn't pretty but it is part of a larger picture that someday will reveal itself to you. Keep the faith, keep reaching out, and keep hanging in no matter what.
Good luck.
Chris
Scott,
Thanks for your frankness and generosity in sharing your situation. I was diagnosed with a heart murmur a decade ago and although several doctors (including some cardiologists) have ultimately told me it is benign, it's something that bounces around in the back of my head during hard training sessions. Your post is a reminder to stay on top of it and keep it in check...and for that I thank you. Best wishes as you learn more about the diagnosis.
What type of doctor/specialist to see?
What test should we insist on getting?
What should we ask them to measure or check for?
What is the technical name for what you have?
starts with an EKG, he saw an abnormality that could either be a "athletic heart" or Hypertrophic cardiomyopothy(sp?)
Doc will see an issue and possibly order an echo cardigram which is a sonogram of the heart, then they can measure the thickness of the ventricular wall or septum
lots of info on this blog: http://athletesheart.blogspot.com/
and the wikipedia entry http://en.wikipedia.org/wiki/Athletic_heart_syndrome
feel free to pass my contact info on to anyone who has questions.
the thing you are looking for may not be my specific condition, it is anything that causes an arrhythmia.I am not sure, but i think some arrhythmia can be benign, where others can be dangerous and there are multiple causes of it.
@enrique - good on you!
for more you can learn here:
http://www.heart.org/HEARTORG/Conditions/Arrhythmia/AboutArrhythmia/About-Arrhythmia_UCM_002010_Article.jsp
Scott - I just saw this thread, and I can't believe what I'm reading. I'm so disappointed for you, yet am in awe of the way you are handling this. Please keep your chin up. No matter what your medical condition turns out to be, you are a champion at handling life's adversities. Thanks for sharing your story. You'll be in my prayers. And no matter what happens, we'll always have that beautiful day last May @ the Gleason Am Zoff. So glad I got to meet you that weekend.