not taking it well...

[cheerchicken05]

Hey all, im new here

im 16 and I was diagnosed w/ hypertonic cardiomyopathy two days ago (friday, feb 6th) and i wouldnt care besides the fact that my doc said i cant cheerlead at least for a few months. Im taking it really hard that i cant stunt... he said especially because im a base & i shouldnt lift. ive been cheering for 7 years so ive been a mess the past two days.

i have kind of severe chest pains when i run and go up stairs but not when i stunt and only every once & a while when i cheer. besides shortness of breath on stairs, thats the only symptoms i really get.

The doctor said that my walls are 2.9...im guessing centimeters or whatever. im new to thiswhole thing...

SO heres my question...why is it that i cant stunt even though i dont feel anything? do you guys think with what i told you that i'll be able to cheer soon...or at all?? thank you!

[Toogoofy317]

Re: not taking it well...

Welcome, to the club you never wanted to be apart of.

Pretty much the reason you can't do the heavy lifting is because it is putting strain on the heart which has been known to cause an arrythmia and in some cases death. But a diagnosis of HCM is not a death sentence you can still do many things and live a normal life span.

I would strongly recommend you or your parents giving a call to Lisa the president of the HCMA to discuss matters and get options on seeing a specialist.The number is at the bottom of the page. Here are some of the risk factors of sudden death. If you have two or more depending on what they are an impantable cardioverter defibrillator might be warranted.

!. Family history of Sudden Death.
2. Septal measurment of 3.0cm.
3. adverse reaction to exercise. (Bp goes down instead of up)
4. episodes of ventricular tachycardia.
5. syncope or pre-syncope (fainting)

It is ironic I was diagnosed with HCM almost two years to the date you were! I do have an implantable defibrillator as well and still lead a pretty active life at 23.

If you need more information post and check out the rest of the message board. Also check on the main page because it has tons of information on treatment options.

Mary S.

[Linda]

Re: not taking it well...

Janelle, Welcome to the message board. You've had a lot of information to take in over the past few days. I know this is a real tough time for you, competitions going on now and a busy basketball season. Take your time reading through the web site and learning what you can. Have your parents seen this site? It would be helpful to them to get the same info you are getting and it's important for you all to be talking over all that's going on and your concerns, etc. As Mary said, Lisa would be happy to talk with your and your family, she could be much more specific with helping you find answers to your questions. In the meantime, ask on the message board, you will get answers and lots of info from others here. Just keep in mind that it is all general information and guidelines. Everyone is so different, and it's important to remember that. Hang in there, best wishes, Linda

[Shelley]

Re: not taking it well...

Hi Janelle I was diagnosed with HCM when I was 25, and it was a real shocker, I had been working out and lifting weights and I had to rethink all my strategies for excercise and exertion. You will need a LOT of time to work things out, but it will get easier with time, and if you learn all you can!

Good luck & take care!

Shelley

[slettenca]

Re: not taking it well...

yes, yes...welcome to the club.

not as bad as you might think though.

i too, was thwarted from the high school arena back in the early nineties when they discovered HOCM in me during a football physical. at least i was honest, i passed out once the previous season during basketball practice.

i fought this from my freshman years until i was a senior. i was kicked off of football, basketball, swimming, and baseball. it wasn't until i got to college, where i convinced a doctor to sign a release form, that i could play baseball again.

it did seem like my world came crashing around me, but not to be cliche, when one door closes...another window opens.

suddenly i really started to pour myself into music, and not three years later, i was touring europe playing in the orchestra for a traveling porgy and bess. (american opera - gershwin).

should you really lift...not too heavy. the reason why, is because while you are straining your muscles, your heart pumps the blood out, and the problem is sometimes it won't let enough blood back in. this is layman's terms obviously, but better for you to understand.

can you exercise...ask YOUR doctor, better yet, ask YOUR CARDIOLOGIST. it may take awhile, to run a series of tests, but pending your overall condition, the answer maybe yes. depends on if you have obstructive or non-obstructive HOCM.

but to give you an example, i'm 26, and i run, and up till they suggested and implanted an ICD, i was VERY active in the kenpo (karate). the only reason for no kenpo is simple, don't want anyone to kick the ICD in my chest!!

you very well may have a normal life. more normal than most. it's your choice to know YOUR parameters. and knowing them will be key in your quality of life.

anyway..i hope above all, that i may have encouraged you. i DO know what you are going through, i went through is when i was 15, as stated above.

[Lisa Salberg]

Re: not taking it well...

Hey Kiddo!

I was diagnosed when I was 12 years old, I remember not understanding why I had to change when in fact I didn't feel hardly a thing. It is very complicated and confusing road which will take some time to figure out so please do not try to do it all in a few weeks. If you want to give me a call to be happy to talk to you as sometimes it's easier to hear of ways rather than read something on the computer. I'm in the office on Tuesdays and Thursdays.

Best wishes,
Lisa

[cheerchicken05]

Re: not taking it well...

Well, i got back last night. Long story short the trip out there was the trip from ****. my dad had a seizure on the plane before we took off (hes epileptic) and it just didnt get better. the next day i saw dr. maron and they had a hard time determining how high risk i am. i only have one of the warning signs so its up to us to get a defibrillator. so...we'll see....

[cheerchicken05]

Re: not taking it well...

Another interesting story...when talking about cheerleading pics being in the newspaper, my mom (also my coach) mentioned HCM to the newspaper sports editor. He was increadibally interested and shocked that an EKG is not routine for a sports physical. with HCM being the lead in sudden death, i thought a test as simple as an EKG should be performed as part of a routing sports physical (allowing students to play sports) he emailed my mom and said he was going to do an article just on HCM, wanted to talk to me, and had already talked to dr. maron.

Do you agree that an EKG should be part of a sports physical for high school students? i think it would prevent not only death, but problems stepping back like im having now. what do you think?

[SharonBates]

Re: not taking it well...

Hi Janelle,
I have been following your posts since you found out that you have HCM. First, welcome to the message board and thank you for participating in the discussions. You are very brave to put yourself & your heart health out there for you, your family and your community to learn about HCM.

My son, Anthony, wasn't lucky like you. I know you don't feel very lucky, but I am sure your parents do when they hear my story. We didn't know Anthony had HCM until he died suddenly at age 20. He was a football player at Kansas State University 3 1/2 years ago. I have since founded the Anthony Bates Foundation, www.AnthonyBates.org, in his honor, and to prevent sudden death in our young athletes. Our foundation does FREE Echocardiograms for high school and college age students (anyone between the ages of 14 & 40) in many parts of the country. Echocardiograms are the only way to detect HCM. In a resting EKG's an HCM heart will only show an abnormal reading about 10% of the time. So, in order to detect HCM with EKG's these test must be done as a "Stress EKG" not a resting EKG. That test takes more time and resource than a resting Echocardiogram.

Please check out our website and the video we have on our site about HCM. If you would like me to send you a copy and/or the reporter you are going to talk to, send me a PM with your address and I will get one in the mail to you right away.

When the Anthony Bates Foundation does these FREE Echocardiogram heart screenings (we are currently working on our 7th event) we find that on average 6% of the young people screened have abnormal readings. Some of the abnormal readings are from high blood pressure or other non-HCM issues but some are from HCM. We do find other heart ailments and we have saved a few lives, educated a few thousand people and continue to make a difference in our own way.

There are several points I am trying to prove with our events such as: we do have young people with hidden heart conditions; we do need to include heart exams in our preparticipation sports physicals; we need to have better, more consistant heart questions on our physicals questionnaires; and, we do need to have more awareness of heart health in our youth.

Let me know if there is anything that I can do for you. You remain in my prayers and it would be an honor to help you in your community.

Best Regards,
Sharon Bates
Anthony's Mom

[Darren1]

Re: not taking it well...

Sorry to hear about your HCM... At least here you are in good company here at HCMA! I recommend that you checkout Sharon's website and also the following article <a href="http://www.heartcenteronline.com/myheartdr/home/research-detail.cfm?reutersid=4167"Here at HealthCenterOnline.com</a>. While I'm VERY stubborn about slowing down my life, I too have had to make changes. I am fortunate in that I have a very mild case of HCM. Talk to your doctor, perhaps you can do more than you think? If not, then there are many many many ways to be involved with a team and help "cheer" them on (and many that don't require endangering your heart if your doctor thinks cheering will). You are in my families prayers!

-D

[SharonBates]

Re: not taking it well...

Hi Darren,
I tried to look at that article (using your link info) but it wouldn't let me in unless I am a patient? Maybe you can send the article to Lisa and she can have it posted on the message board.

Sharon

[cheerchicken05]

Re: not taking it well...

Thank you, sharon!! i would like to know how i can get the word out even more about the importance of athletes like me getting echos. i was lucky, because i have symptoms. other people aren't and enough people die yearly to make this an issue. it would also prevent anxiety from being pulled from stuff like i am now. since this is a lifelong issue, if they detected it in my first sports physical in 5th grade, i wouldnt get so hooked to a sport i know & love.

Some day we'll make a difference.

[sueb]

Re: not taking it well...

Janelle---You're so right about the benefits of detecting HCM early in a kid's life. The most heart wrenching stories on here, at least to me, are the ones where an athlete like you has really built his/her life around a sport and then must stop because of HCM. It would be difficult to know at an early age, but at the same time it would help someone develop interests that would be in keeping with their abilities over their lifetime. I'm pleased you are busy thinking about turning your lemons into lemonade! Best wishes to you. Sue

[Darren1]

Re: not taking it well...

Not sure about that link. I think it's free to register and then you all should be able to view it. It's worth taking the time to do so!

-DB

ps: if you try and still can't get it, let me know and I'll get it posted elsewhere...

[Millie Acosta]

Re: not taking it well...

Janelle,

I too have been following your story and my prayers are with you. You may not feel lucky, but you are because some kids don't get a second chance. My son was diagnosed when he was 8 years (he's now 11) and although he was very young it wasn't easy for him. This kid was used to doing year round sports; soccer, basketball, baseball and football. All of a sudden in the middle of his second year of football camp getting ready for the season, everything related to sports ended for him. We took a year of off from sports as a family and enjoyed visiting museums, going to festivals, etc. Then we found bowling and golf. He bowls pretty much all year round - Sept to May and then golfs in the early summer. This he accepted as a nice tradeoff and got very much into it. He hopes to become a Pro Bowler one day. (Mom just wants a Bowling scholarship ). Gym was another thing he was excluded but I had a talk with the teacher and he is the teacher's assistant during gym. (He even has his own whistle. ) I know he still misses baseball and basketball, but we take him to shoot basketballs at our local gym and in the summer we play baseball in our backyard. He hits and we have his sister or brother run for him.

I know it must be difficult, but you have LIFE and that's better than anything, I'm sure your parents will agree. Hang in there and stay positive. When I feel down and when I think my son is feeling down I say, Remember to laugh . . . .it is the music of the soul ! He then smiles because he loves music! - Good luck.