Hocm related death

[wonderly]

Hi Gang;

FYI, there was a young Canisius College athlete(Buffalo) who died while practicing basketball last week. He didn't know..but he had HOCM. SIGH!!
:cry:

We truly need to push for some type of legislation for HS and college athletes.

Best of health to all!

Tricia

[Abbygirl2]

I am so sorry to hear that. My heart goes out to the family.

Before the kids get into high school(here in Canada) they need to have a physical, I would like for an echocardiogram to be part of the physical. Does anyone know who mandates what tests are to be done during medicals/physicals? My kids fortunatley will be getting regular echos, but I worry about all those kids that don't.

Thanks
Pam

[SharonBates]

First, I would like to extend my deepest heart felt sympathies for the family of this young athlete at Canisius College and for the entire faculty, staff & students of Canisius College. The loss of a young athlete is a terrible tragedy that is too often repeated. My prayers are with these people during their sudden loss and grief. May God give them all comfort and peace with surrounding light & love to everyone.

Second, in Arizona we have the AIA (Arizona Interscholastic Assoc.) that mandates the physicals and the defined questions on the preparticapations sports physical questionnaire. I had a meeting with this group just a few weeks ago. We discussed that very subject...everyone in the AIA (doctors, board members & high school athletic directors) is concerned about the cost that would be felt by families if any heart tests were required in the sports physicals. Most insurance companies will NOT cover this test unless there is current evidence of HCM or sudden death in your family. Therefore the families would have to pay for this exam. This burden is not one to be taken lightly, as the cost of one echocardiogram would be $600 to $1600.

Lastly, the foundation that I created, The Anthony Bates Foundation, offers FREE echocardiogram tests to young people between the ages of 14 - 40. We started this foundation after the death of my son, Anthony, at age 20 from undiagnosed HCM. Getting people to help with this foundation and the education process of HCM is a great challenge. As the case of any grassroots program, including the HCMA, the steps we take are small. Until larger monies are raised the Anthony Bates Foundation will only be able to offer minimal numbers of FREE heart screenings and nominal amounts of education for HCM.

Lisa has done a wonderful job growing the HCMA over the last eight years, we continue to ask for your support in raising the awareness of HCM. Write letters to your local paper, talk to your schools, and talk to your communities. Without your support we are limited in this fight to stop sudden death in our young people. Please continue to think creatively of ways to support HCMA! Those of you with this condition are our biggest advocates, cheerleaders and spokespeople. Helping each other is what we are really here to do!

Put your thinking caps on!
God Bless,
Sharon
www.AnthonyBates.org

[Lisa Salberg]

I think job one for us here in the USA is to have ONE STANDARD Preparticipation questionaire and guidelines for WHO can conduct a physical - for ALL 50 STATES. Adding an ECG would be a cost effective way to help know WHO may require additional screening.

Sharon has done an amazing job and I remain impressed with her ability to take her pain and turn it into something helpful and productive!

God Bless the young man lost.

Sincerely,
Lisa

[mtlieb]

USA Today May 6, 2004

Canisius hoops player dies during workout

BUFFALO (AP) — Coach Mike MacDonald managed a slight smile, recalling how he watched Richard Jones grow up during the player's three years at Canisius.

That, MacDonald said on Thursday, was "the fun part," watching Jones go from being a raw freshman, who required help opening his first bank account, to emerging as a quiet, team leader and dedicated student.

"The fun part is when you see a kid go through what Rich went through and kind of grow up right before your eyes and be such a great kid," MacDonald said. "To me, that's the reward of coaching."

And that's what made Jones' sudden death on Wednesday shocking.

"It's terrible," MacDonald said. "This is as down as you can go."

Canisius College and its men's basketball program are in mourning. Jones, 21, died shortly after he collapsed during a workout with several teammates, and under the supervision of MacDonald and his assistants, at the school.

An Erie County medical examiner listed the cause of death as natural, the result of a genetically enlarged heart. The autopsy results were released by Canisius at the request of the player's family on Thursday.

The condition, known as hypertrophic obstructive cardiomyopathy, is a disorder of the heart muscle that generally includes enlargement of the heart and a thickening of the walls of the left ventricle.

The condition is difficult to detect in routine physicals and often affects athletes. Last June, an autopsy ruled that a similar heart condition played a factor in the drowning death of University of Hawaii freshman swimmer Mike Sheldt.

Jones' death stunned the midtown Buffalo-based, tight-knit, Roman Catholic school with an enrollment of 3,400.

"Nothing can prepare you for something like this," said Jon Ferris, who just completed his senior year on the team. "Time's the only thing that's going to heal this."

Athletic director Tim Dillon said the school, which announced Jones' death before holding a vigil on Wednesday night, has already provided counselors for players and students. Dillon said Canisius will dedicate, "a celebration of life" to Jones on Saturday evening at the school's chapel.

Dillon said he's been in contact with Jones' family, helping them arrange transportation to Buffalo and a memorial service, which has yet to be determined. Jones is a native of Boston, where his mother, Delta Grant, still lives.

Jones, who had just completed his junior season, played in 88 games with the Golden Griffins, starting 47. The 6-foot-6 forward averaged 5.2 points and 4.3 rebounds for his career.

Jones collapsed about 20 minutes into the sanctioned workout. He had taken a shot and began running toward the baseline when his body began to tremble and he fell face first to the floor, Canisius spokesman Marc Gignac said.

Two of the school's trainers, Andrew Smith and Matthew Nuesell, immediately rushed to help Jones, who was unconscious but breathing and had a pulse. Jones lost his pulse while the two trainers administered CPR and used an automatic external defibrillator, Gignac said.

Jones was taken to the hospital, where he was later pronounced dead.

Jones is the second Canisius basketball player to die while attending the school. On March 5, 1988, junior Jeff Taggart had a heart seizure while on the bench during a game against Niagara. He died in an ambulance on his way to a hospital.

Ferris, last season's team captain, has fond memories of Jones.

"He had a smile that would light up an auditorium," Ferris said. "He would've been the person who'd be trying to cheer us up at a time like this. That smile, and images of it in our minds, is what's going to last."

Asked what he can do to console his teammates, Ferris put his arm around a reporter.

"That's about it," Ferris said. "Just being a big shoulder for someone to lean on."

MacDonald informed his players Wednesday that it was important for them to look out for each other and that it was OK to show emotion, even as everyone has their own way of grieving.

"Life lessons, that's what this is," MacDonald said. "You're waiting for something to chase it all away. But unfortunately it's not going to happen. We'll deal with it, and it's part of life."

[Burton Borrok]

I don’t know what all the fuss is about. Testing all our school athletes is just not cost effective. So what if occasionally one or two of them fall over dead? It’s the parents who pay the funeral expenses, not the school. Haven’t we wasted enough of the schools budgets teaching these kids in the first place when they were bound to drop dead anyway?

I think the most cost effective way to handle the situation is to make the parents pay for the echo’s of their children who want to play sports (with no help from the school district), and if a child is diagnosed with HCM he should be thrown out of school. There’s absolutely no point in throwing good money away for his education. We don’t have enough money as it is. And that’s the bottom line isn’t it? Money? After all, we have an endless supply of kids. Lose one, make another.
Burt

[Darren1]

What a tragic story. Even with a D-Fib on hand, they were unable to help him. Very sad (and scary).. I wonder what the "success" rate of D-Fib's is. This young mans family is in my prayers!

[Darren1]

I just thought of another question. What percentage of HCM'rs show irregularities in their EKG? Is it unusual that my doctors have NEVER seen any abnormalities in my EKG?

[Lisa Salberg]

ONly about 10% of HCM'ers have normal ECG's . It is not perfect...but it is a start.

My dear dear Celtic...stories like the one above are the ones that make me so very nervous when you post about sports. You know I have long accepted to agree to disagree with you on this topic... :?

Be safe - and be well! :wink:

Lisa

[mtlieb]

Darren,

An ECG cannot be used to diagnose HCM, but it usually will show up as an irregularity that would prompt further investigation by echocardiogram. At the very least, a program of ECG testing in sports would provide some measure of filtering individuals with potential risks. It's not foolproof, but it would be more than we currently have in most places.

Every time I have an ECG at an emergency room, I get delivered the 'bad news' that I've had a heart attack. The poor doctor always looks so somber too when he tells me that. Then I have to say 'No, it's okay doc, I just have HCM'. Apparently on an ECG, the stiffer muscle shows up just like that of a person who's suffered a heart attack.

Jim

[Darren1]

Thank you both for the feedback. While I agree with Lisa that the story above is tragic and we should be testing athletes prior to participation in sports, I wonder how they would determine who should and who should not play sports.. (saying all HCM'rs should not play sports sounds pretty extreme). Thanks for the concern and caring Lisa. (You can call me Darren.. I know my nickname is Celtic, but my name is Darren).

[Burton Borrok]

Dear Celtic Darren,
(Just gotta be Irish.) Exercise if you must, but please don’t go pushing the envelope. I’ve enjoyed having you around – and would like it to continue.

When I think of you I can’t help thinking of the guy who jumped off the Empire State Building and was heard to mutter as he passed the second floor, “OK so far.”
Take care, good buddy. Please take care.
Burt

[Burton Borrok]

By the by,
I can’t see why the school districts can’t contract with the county hospitals to get their students discounted echo’s before going out for sports. I bet they would be able to get remarkably discounted rates. In fact I would bet that most parents would be willing to kick in to have their child get full annual physicals, including echo’s for the sports people, those with abnormal ECG’s and those with sudden death in their family history.
Burt

[Darren1]

Thanks for the concerns! I have a couple quick comments in response..

Burt: Exercise if you must, but please don’t go pushing the envelope. I’ve enjoyed having you around – and would like it to continue.

Darren: Burt, living with HCM is itself "pushing the envelope". I've enjoyed "being around" and don't plan on going anywhere. I take reasonable precautions and will continue to. At the same time, I am willing to risk dying to live. Last time I checked, we all checkout sometime. Too many people endure long lives but never really live. I'd rather risk being a statistic who "died being too active" than the opposite (actually, I'm trying to find the balance between the two and yes, I realize that involves risk).

Burt: When I think of you I can’t help thinking of the guy who jumped off the Empire State Building and was heard to mutter as he passed the second floor, “OK so far.”

Darren: Yeah, to quote one of my favorite stories/movies.. 'It's a dangerous business going out your door. You step onto the road and if you don't keep your feet, there's no knowing where you might be swept off to.' -Bilbo Baggins
Unfortunately, the number of people dying from falling/jumping off high buildings in large citys is lower than that of people working in them (especially after 9/11). Life has a habit of reminding us not to be reckless, but at the same time to still live.

Burt: Take care, good buddy. Please take care.

Darren: I will, you too!

[mtlieb]

I'll be damned if that dead horse didn't get up and find it's way into another thread :?

[Burton Borrok]

Yeah, I’m sorry,
It’s just that I care about people. Darren is a grown man and has made his decisions on how he wants to live – as he has every right to do. I think I understand his motives, and I guess I have the right to disagree with his choices, but I can’t fault him on them. I guess I’ll go sit over by Lisa and also agree to disagree.

Dearly beloved, we are gathered here to bury a horse . . .
Burt

[SharonBates]

By the by, I can’t see why the school districts can’t contract with the county hospitals to get their students discounted echo’s before going out for sports. I bet they would be able to get remarkably discounted rates. Burt
What is wrong with offering FREE echocardiograms & ECG's? You would think that more people would be supporting the movement I have created. When we do a screening through the Anthony Bates Foundation & the use of volunteer doctors, technicians & echo machines our costs are in the single digits to the $600 to $1600 that is normally charged for this test. The issue I have been dealing with is most people don't know about this program and it's tough to get the word out to the right audience. Again, I'll keep trying with fortatude and strong will & someday, Oprah will help, too.

In Arizona, the individual high school is responsible for offering a school supported pre-participation sports physical. I have a feeling it is like that in other states too. Therefore, "county hospitals" are not likely to jump on the "bandwagon" of one school. There needs to be more combined efforts to make that program work. I'll keep trying and someday everyone will be able to pronouce Hypertrophic Cardiomyopathy.

Sharon

[Darren1]

I agree. The horse is buried. Let's let her rest in peace! :)