HCM - Hypertrophic Cardiomyopethy/ Chris Gleason

Triathlon Forum
2

First of all, happy and sad for your news. Happy that you found out what is going on and can take measures to be around for your kids and family. Sad that you may not be able to partake in “extreme endurance sport” and the comraderie that comes with participating in these things.

Having said that, seek more opinions and find out what are and are not your true limits. Perhaps you can’t compete, but you can still be a triathlete, still rolling in easy effort swimming, biking and running in your daily life. I hope you can still keep doing that and set a great example for your kids!

3

By no means am I the author of said fairy tale (or a Dr.):
However.
Get genetic testing.
Do a Cardiopulmonary stress test.
HCM is not a diagnosis that simply ends there.
There are tons of studies going on where the thickness ISNT the determining factor in sudden death.
PM me if you need more.

4

Thank you for sharing. It has to be difficult to hear that type of news. But as was stated before, better to find out now than at the “end” (of whatever you are doing at that time).
Find a way to stay involved. Mentor some newbies. Become a GASPPP - Team in Training Coach/Mentor.
Volunteer at races. Get a part time job at a bike shop.

5

Did you have any symptoms looking back?

6

I am so sorry to hear of your diagnosis.
My thoughts are similar to others’: Consider a consultation with a cardiologist who is both well-versed in your condition AND highly knowledgeable about the physiological changes and demands of athletes and IM training. Those of us who are very active experience many conditions differently than our more sedentary counterparts- and even more so for things cardiovascular.

In the meantime (as hellishly difficult as it is - and I know because I had a TIA only last week), do what you can physically with respect for your body, mind and condition. Appreciate what you have- again, I know how difficult this is when all you want to do is think about what you HAD. Share, teach and take very good care of yourself on all levels.

7

Thanks for sharing this very personal issue with everyone. You have a healthy perspective on it all right now. I only wish that I might be able to approach such a diagnosis in a similar fashion if I were in your position.

Couple thoughts from my Internal Medicine perspective:

  • Yes, get a 2nd opinion for sure

  • HCM can be associated with some malignant dysrhythmias so you may ask if an implantable defibrillator is in your future. This may require you to have some electrophysiologic testing first (an event monitor, a Holter monitor, maybe even a heart catherization).

  • Do you have symptoms? Palpitations, shortness of breath (unexplained), feelings of “about to pass out”?

  • I hope your HCM is not bad enough to warrant a surgical procedure, rather I hope if anything you just need a beta-blocker (which can zap the libido and energy level) or a calcium channel blocker.

If you are truly out from racing, from an triathlete’s perspective, someone who enjoys the lifestyle as much as yourself should consider getting into USAT race directing or officiating. I only bring it up because that would be the route I would probably pursue if I was unable to compete.

8

I never knew Chris, but I was at the marathon that day and he apparently went down within 10 minutes of my finishing. I was just stunned to hear the news, plus losing a young man at the same race during the half marathon. Between that, turning 50, and before starting training for my first IM I went to the cardiologist. Fortunately I had good news, but I agree with you that it is an important 'check off the box. There are no guarantees in life, sure, but there are ways to mitigate risk.

I wish you good fortune and hope that another cardiologist will provide additional information and assurances for continued health. Although triathlon and sports may be an important part of life, I would give it up in a heartbeat (see how I worked that in?) if it came down to that or being there for the kids and family. As someone in the medical research field I can tell you every day you’re alive someone is working on a treatment. Hang tough.

10

some more info to answer some of the questions:
i have had no symptoms whatsover. I have trouble with seasonal allergies that cause asthmatic like symptoms, but they actually are heighten by talking, if i go for a run or a long bike, they don’t bother me. The only times i have ever been short of breath was when i climbed stairs when i was heavier, since losing weight and doing tri, all seems to be fine.

I will be getting a 2nd opinion, but i am quite sure my triathlon days are over. Coaching, instructing, officiating and race management are all things i am considering. I will be a volunteer in the registration tent at IM Lake Placid this Thursday afternoon and out cheering people on Sunday. I will probalby be in an Endurance Nation Jersey and IM Louisville hat, so if you are up there and see me, say hello!

I dont know how or why, but both my cardiologist and another have told me that i can enjoy a life of recreational non-competitive running and cycling, doing the local guided rides, etc. intial guidance is to keep myself at under 140 bpm. I am not sure how or why this is allowable or possible, but i will go with it!

I have done 3x IM and that is more than many get in life. As much as i enjoy it, there is a time to stand down and as much as i have fought it, i think it is that time.

thank you all for your good wishes. ANY info on the topic is most welcome!

I have a close friend who was an elite level (world university games) triathlete when we were in university together. he was diagnosed after going syncopal 3x in a month post-workout. after doing a ton of research and getting a couple of different opinions, he is still able to stay active with a hard cap HR limit (for him, this is still faster than I will ever be) of around 140-150. he does have a loop recorder in, but has never had a malignant dysrythmia. i hope that you can find something similar that works for you.

it’s worth exploring the options, looking into the potential for and ICD and potentially medications to prevent fibrotic changes to the heart.

I am sorry to hear that you have been diagnosed, it is life changing and never easy to be told that you can’t do what you love. however, this method of diagnosis is ultimately better than the other…

11

Sent you a PM
.

12

I was nervous as well after Chris died. In January, I started having chest pain that radiating up the neck. I was pretty sure it was GERD, but the doctor recommended a full cardiac workup just to be sure. I had an EKG, echo, and stress test, and everything checked out fine. It does give me some peace of mind, though, knowing I don’t have that risk lurking in the background.

My best friend’s mom was recently diagnosed with hypertrophic cardiomyopathy. My friend is 37 and is terrified of going to the doctor now to check it out. He’s got a 50/50 shot, and some symptoms in retrospect make it seem likely that he’s on the wrong side of that 50%. He’s got three little girls that if he got, also have a 50/50 shot. I need to push him to put his concerns aside and get tested now.

14

Scott,

So sorry to hear about your preliminary HCM diagnosis. Kudos for getting tested and finding out before an accident. I was never a EN member, but rode with Rich & Co early on. I was also diagnosed with a different cardiomyopathy in '09 and had to stop endurance training “cold turkey.” Like you, I had absolutely zero warning or preliminary signs. Not the easiest thing: every trail, mountain peak, beach in my neck of the woods are “infused” with memories of runs, or rides… Not counting that most of my buddies would inevitably drift away once that shared bond was removed… but there is plenty of good life after.

As other have said, learn as much as you can and see the very best docs (would be an electrophysiologist in your case.)

And yes, on ST these things always happen to others.

Send me a PM if you’d like to talk.

15

Weird timing as I rarely visit ST…

What FrankTheGuard said…

I could give you the long version…but the short version is that I could have written most of your post back in 2007. While I’m not “competitive” anymore, I have done a few Ironmans, the Leadville 100 5x and some other silly stuff since I was told the same thing…

NOT trying to give advise or pound my chest, yet after A LOT of echos, stress echos, 3 heart caths, a few heart MRIs and hundreds of Dr. Appts, it appeared to be more art than science. The surgeons will ask why you want to be so fit and the researchers will want your data. The data simply does not exist to support many of the theories. Barry Maron is the leading researcher for HCM…so perhaps you might want to visit him if he’s still around. No Dr. is in a situation to tell you what to do nor can they predict your outcome. Working out is only a healthy pursuit in moderation. I’d guess most people here aren’t very “healthy” as the triathlon community is based upon faster/more/etc…

There are MANY things going on with your heart…HCM, by definition, is genetic. Dr. Maron concluded mine was not genetic…I was just given given a bum muscle and worked it too much, yet also have a floppy mitral valve (double whammy). I did have symptoms in roughly 5 Ironmans prior to blacking out at an Ironman in 2007 and given nitro tabs in the ambulance in route to the hospital. Certainly not something I wanted to hear…which triggered a shitload of tests…which ultimately led me to Washington University (Mankowitz and Reiss) and then Mpls Heart (Dr. Barry Maron). There were others along the way.

Yes, I have had symptons since then…yet I how know what is going on. I don’t have the Eye of the Tiger anymore, yet still shoot for the city limit sprints on Tues night and I still “participate” in a few events per year. Certainly not the race calendar I had 10 years ago…yet life is more enjoyable.

Wish you the very best.

16

Scott:

Sorry to hear this news. I’ll be up in LP this weekend so will keep an eye out for you. It would be great to catch up. Where you staying?

Gio

17

Scott:

First thank you for putting this out there to help build awareness. Too often we feel invincible. I could not agree more with you about getting that check the box checkup…

This past thanksgiving I was out for a run and had a searing and I mean searing pain driving through my left chest wall; I literally thought I was going to die right there. I had been sick for a little while, the drs thought it was strep, then bronchitis, then pneumonia. Long story short I began making weekly trips to the Lahey clinic in Boston and after numerous echos, stress echos, holster monitors, Mris etc I was diagnosed with myocarditis resulting in heart failure. As a father of 3 boys, 5,3,1, this was devastating…lake placid was the furthest thing from my mind.

End of a really long story I will be volunteering as a peeler on Sunday and I am aiming for a 5k in September.

I would say find another dr who works with high endurance athletes day in and day out, if you want I will put you in touch with my team in Boston, not that they are going to give you the answer you want to hear but It can’t hurt.

If you want to catch up for a beer or coffee pm me…

18

Scott,

I have a similar story, I have been diagnosed, with The same thing but in the Apex of the heart. All the tests have been done and I also went to Dr. Maron. I grew up a national level swimmer, Division I college swimming and 3 ears ago at the age of 48, I had an irregular EKG.

Get some second opinions, find a cardiologist who is willing to really give you an understanding of your risks. As for me, I push it a little, but my form, is a little less risk. You are welcome to PM or email me to discuss further.

Best of luck and be safe.
.

19

Thanks for sharing this very personal issue with everyone. You have a healthy perspective on it all right now. I only wish that I might be able to approach such a diagnosis in a similar fashion if I were in your position.

Couple thoughts from my Internal Medicine perspective:

  • Yes, get a 2nd opinion for sure

  • HCM can be associated with some malignant dysrhythmias so you may ask if an implantable defibrillator is in your future. This may require you to have some electrophysiologic testing first (an event monitor, a Holter monitor, maybe even a heart catherization).

  • Do you have symptoms? Palpitations, shortness of breath (unexplained), feelings of “about to pass out”?

  • I hope your HCM is not bad enough to warrant a surgical procedure, rather I hope if anything you just need a beta-blocker (which can zap the libido and energy level) or a calcium channel blocker.

If you are truly out from racing, from an triathlete’s perspective, someone who enjoys the lifestyle as much as yourself should consider getting into USAT race directing or officiating. I only bring it up because that would be the route I would probably pursue if I was unable to compete.

Beat me to it.
So sorry to hear of your losses and of the diagnosis. However, we did quite a few ICD’s for HCM and do nicely. Saw a fellow today that is quite young, post MI with ejection fraction of 25% post MI, recovered up to 45-50% with beta blockers. He isn’t an athlete but the diagnoses are the same…different causes.

Talk with your cardiologist, talk to an electrophysiologist as well. They are the experts on this and will be the ones that will know the most.

20

I’ll look for you at LP this weekend also. I’m doing bike transition security in the morning and run aid at the Boathouse 8pm-12am.

21

Anyone know of a cardiologist they would recommend in the Philadelphia area? My experience with doctors is that it is very tough to find someone who understands endurance athletes. I fit much of Chris G’s background (early 40s, similar times at IMLP & Phila marathon). I’m in the final build for doing back to back IMs in August (Copenhagen & Sweden)–a first for me. Workouts have felt a lot tougher lately but I contribute that mainly to the heat. Yesterday’s 8 mile run in the morning was tough after 4 miles; the 2 hour afternoon ride left me feeling a bit faint even 30 min later (I typically recover quickly).

Regardless, I want to get an informed opinion.

Thanks to Scott for sharing and to others for offering some insight.

23

If anyone wants to meet up and discuss this on Friday or Saturday in Lake Placid, please send me a PM with your email address and i will create a group “reply to all” email.

I plan on attending Patrick’s Endurance Nation 4 keys talk on Friday at 10 am near the swim start, perhaps meeting somewhere near there around 11 am is good?

also: in turning lemons into lemonade, i am planning on starting a charity focused on “sudden cardiac death.” In most every other disease, you google it, you find a charity, you find patient resources, what to do, what you can and can’t do, what to expect, etc. Additionally, as evidenced by this thread, there is a tremendous amount of work to be done in “spreading the word” and building awareness. My local Health club is already onboard. Upon hearing my story, they also comped me my membership for the rest of the year,nice perq, but i want every athlete out there to see a cardiologist and get checked!!

What do you need?
I’d like to join in your effort.
Frank

26

Scott-
It was a pleasure to meet and talk to you in the merchandise tent. I was struck by how upbeat your were and feel like you really are seeing the glass as half full. Kudos to you. I hope you find the best medical care available and are able to find some form of activity that feeds your soul. I’ll be thinking of you tomorrow.
Best-
Gina