heya jsut a few questions

[smelly_cat1234]

hey

how are you all been ?
jsut a few question i blacked out for about 30 sec and now ever sines that , iv been feeling realy tired and have no enegy is this normal or is there sometihnk wrong there ??

another thing , i just went on school camp and the teacher in my group wouldent let me do much cos of my heart and my dad was at camp 2 and he wouldent let me do much either? , i know there only doing it cos they care but i think there going 2 far and there always doing that to me, iv tried talking 2 dad but he wont seem 2 listen to me, he has hcm 2 and ever sines the docs said my hearts worst then his hes been like this, any idear wat to do?? , just to get them off my back , i know i have my hcm and all but i don't wont 2 let it rule my life im only 16 got 2 liv it up, but dads seems to think i should let it rule my life

ths
*margie*

[angall]

Hi Smelly
There are so many questions I have....How severe is your HCM? Do you have an cardiologists that specializes in HCM? If so, what kind of restrictions has your cardiologist given you? If not, seek one immediately. I am assuming that you do because your dad also has HCM. If you do have a cardiologist that specializes in HCM PLEASE abide by what your cardiologist suggests. You said you "blacked out". Fainting, feeling tired, no energy is something that has and is happening for a reason. Have you ever had an echo? If now, PLEASE get one! The echo will tell the extent of your heart disease.
Talk to Lisa if you have any questions. She will be able to steer you in the right direction. Her phone number is listed below. Be careful and take it easy until you have your condition researched further.

[Glen Beamish]

Margie, passing out like that can be very serious, you should contact your doctor and let them know what happened.

[angall]

Hi Margie
I've been thinking about you since I posted my message this morning.\, weighing out what I said. I know how you must feel. I lost my son to a massive heart attack/HCM when he was 15. He had echos numerous times, but he had such a low amount of this horrible disease the cardiologist told me that the only way it could have been detected was doing a cardic cath. Being a parent, I understand how your father feels, he wants to protect you and guide you in the right direction. BUT, should your doctor tell you of your restrictions, he should not try to put you in a "protective bubble". PLEASE contact your doctor, tell him of your concerns and go from there. Please keep us posted.

[Sarah]

Dear Margie,

When did you black out and have you told your dad?

Blacking out is a sign that you may need medication or an implantable defibrillator. It is very serious and must be checked out. Being tired and not having energy are signs that your heart is not able to do what it should.

No, HCM shouldn't "rule your life" but it does mean that you have to listen to what it is telling you and that doing too much may not be something you can do, even if you tried. I know it is hard to not be able to do everything your friends do, but if you look around there are other just as fun things to do that don't require running around or exerting yourself too much.

Please talk to your dad and doctor about the black outs and about how much you want to be able to do vs. how much you can actually do.

keep us posted and take care,

Sarah

[Burton Borrok]

Hi Margie,
Mind if I butt in? Passing out might just be because your medications need adjusting, or it may be a very serious sign of trouble. We HCM’ers can’t afford the luxury of ignoring things like that. The cause has to be found and corrected, or guarded against with the proper medications. What drugs are you on?

Until you’re properly evaluated and corrective action is taken, I would advise you to not change positions quickly (like springing up out of a seat) as that could cause another blackout. Heavy exertion activities should also be curtailed. I know this sounds like rotten advice to be giving a 16 year old girl who wants to fly with the wind, but until your problem is detailed, and the proper corrective action is taken, that is the name of the game. She who plays, not runs away, lives to play, another day.

Dad’s can be a pain sometimes – can’t we?
Burt

[Reenie]

Margie, I'm going to side with the others here. You need to make sure both your dad and your doctor knows about blacking out. I think you dad and your teacher are doing the absolute right thing by not letting you just go nuts at camp. It could be really dangerous, and I'm not talking about the possibility that you could break your arm either. You take care.

Reenie

[jujemendoza2002]

I would have to agee with everyone that your father and teacher are both looking out for your best interest. I also see how you feel that everyone is telling you what to do and that having hcm and all problemo's that come with it can be really hard to swallow sometimes, but you can get through it. Really in some ways you are blessed with a father that loves you so much and teachers that care, this is great, as a child (I also have hcm) I remeber feeling jaded too, I didn't have my father, died when I was babe and at first when I was very symtomatic my teachers looked away alot and never paid much atten to the fact that I felt sick due to hcm.
Most important make sure that you tell you cardiologist about the blackouts and try to talk to your dad about what you feel, good or bad, that's your familia, stay close.
Besides right now might be tough, but things will brighten up for you, I'll pray for you :!:

[smelly_cat1234]

hey
thanks for your replys , to asner the question

yeah i do have a cardiologist and i have had a echo done be4, i have one probble ever year and no im not on any meds right now my cardiologist is looking in to my heart and all now

i have a device under my skin a lope recorder your probble havent heard of it, its only been around for a few years and im the 3ed person in the pay of playent to have one , its like the size of a lighter it goes under the skin and if i have black out, cheat pains ect i press this bonton it recorders my heart beat then they put it form that to a computer so they can see my heart beat and all ,it stays in me for 18 mouths then the battery dies and onces its out they decided wat do abuot my heart from there

and how bad is my heart , im not sure and im not sure wat the thinkness is either, i don't think its that bad the only reason my doctors go all dram queen on me is cos i must have a hi risk of blacking out and all somethink and cos my gradmother and aunty both died form hcm

and no i didn't tell dad or my doc about that black out but iv blacked out about 4 times and i told them thous times ,but when ever i black out or go dissy ect and tell some one i have they take me up for a cheeck up then they always amit me 2 hospitil and i hate it, i was put in hospitil 4 times in the last 6 mouths and im only 16 , my dad tells me i jsut got 2 get use 2 it and all but i don't realy wont 2 get use 2 it and i know there peopel probble worst out there then me but it still doesent make hospitils any better

and im sorry but i don't realy agree with been told wat i can and cant do , i know there things i cant do but dads got 2 let me be the one choose wat i can and cant do he cant keep controllnig me, i know hes cares but he cares 2 much


*margie*

[angall]

Hi Margie
I'm so glad you filled us in with some of the questions we asked. I know the feeling of not being able to do what you want to do. All of us with HCM have limitations even some younger than you. Unfortunately some of us are older and have done things (hiking, swimming, etc.) that you feel you should be allowed to do. I can remember when I was about 17, I was in my senior year of school. Others were going to the beach playing volleyball and swimming, playing tennis and involved with extracurricular activities. Where was I? I was at home. I was homebound for my senior year and couldn't even attend my graduation. I was sooooo angry. Most of us have been in your shoes. Although I wasn't diagnosed with HCM until I was 20, I was tired, SOB and my heart would either race or skip beats when I was 16. Back in that time, 1971, HCM was not as well known as it is now. I was a ginny pig at the National Institutes of Health in Bethesda, Maryland. They were doing so much research. Fortunately now they have so much knowledge, technology and facts that qualified cardiologist in HCH KNOW what is best for their patients. Please don't think that we are adults.....adults don't understand what I'm going through. WE DO! Been there, done that. Times change, but people still get this horrible disease. You said you have to wear the loop recorder for 18 months. Is it too much to ask that you abide by the doctor's recommendations until he determins the extent of your HCM? I agree with you as far as hospitals. At my age, I still cry when my cardiologist tells me I have to be admitted. REALLY! No one wants limitations, no one wants to be told what to do, but life for you can be made as normal as possible with the correct medications and possibly inplant(s). Please keep us posted. I do care and understand your position.

[Glen Beamish]

Margie, your absolutely right, you do need to take control, I know your Dad has very good intentions, but saying you have to get use to it may not be good advice.
Passing out 4 times and having a couple close relative die from HCM are two of the five criteria for having a defibulator implanted.
If passing out is due to your HCM, you know that cannot be good.
If your cardiologist is not an HCM specialist, I would call Lisa and see about an HCM specialist in your area and make arrangements to see him ASAP.
You want the opportunety to make your own decisions, this would be a great time to talk to your Dad and tell him what action you want to take.
Print what others on the board here are saying and show him, there maybe more to this than he thinks.
You could also arrange for all three of you to talk to Lisa.
Margie you go girl and good luck.

[Toogoofy317]

I totally agree with everyone else on this matter. I know how it feels being told you can't do something. As most people know I am very active and I've had to put a lot of things on hold until I found out what I could and could not do. I used to get angry because I'm only 23 I should be able to do what my friends can do!

I've had to re-asses my career options! I wanted to go into the military and become a doctor but that is not an option anymore. I also wanted to be a paramedic but we've also found that to not be an option. So I just keep searching. Now I am pursuing a nursing degree in hopes I will be able to handle it. If I handle it well enough well those dreams of becoming a doctor may still happen it might take a little longer than I would have liked.

And as far as hospital stays go unfortunatly that is apart of our lives. Maybe someday it won't be as frequent but we do have to adjust our lives accordingly. I don't get the choice anymore if I'm not feeling well my friends throw me in the back of the car and they just haul me to the hospital practically kicking and screaming. My boss just a few weeks ago sat me in a wheel chair (I work at a hospital) and made me go to the ER. She took my car keys! I used to get really mad at these people for making me go but this past month I realised if they hadn't been this stern with me I might not have been here today!

So Don't give up on what you want to do. Just wait a little while and the rewards may be even sweeter!

Mary S.

[Lisa Salberg]

In short... Call the doctor TODAY. If you have the monitor in - they will be able to see what happened. If it was due to a rythm problem...they can take one course of action - if not they will take a different path.

take care of yourself - this is important and you should speak to someone ASAP.

Lisa

[Reenie]

Margie, I just want to say that even though we all understand how you feel, you dad is doing the best he can. He doesn't want to lose you (I mean have you die!!) because he let you go play basketball with your friends. (You can fill in whatever activity you want there.) I also had a heart condition as a teen and I didn't want to be told what to do either. But you know what? If I hadn't gone to the doctor and gotten proper treatment, I'm positive that I would not be here today. Rethink not telling your dad about blacking out again. You need to get this checked out. There may be something that can be done about it.

Reenie

[annamc]

Hi there Margie,

Believe me, I know how you feel. You want to do other stuff that "normal" people are doing. I remember my teen years and I used to sit on the sidelines with tears in my eyes b/c I couldn't do stuff and no one understood my condition. Let's just say I didn't get no sympathy. I think though that you need some form of control over what is going on with you b/c the earlier you take control the easier it is to make decisions later. I went the negative route to take control and I just don't want to see you do that. Margie, stay strong and just calmly explain to your dad what you'd like from him and what you'd like to be able to do. Let the doctor set the restrictions and go from those guidelines.

Take care,
Anna

[ginnilea]

I just have to reply... The nurse in me makes me... :lol:

I am also a young Hcm'er... I was diagnosed my senior year of college. I am not going to tell you what college kids do but you can imagine how sad I was to not be spreading my wild oats too. This is really a time for you to evaluate yourself, the importance you have to yourself and others. the world is a brighter place with you.

As for you blacking out.. This is not good. That needs to be under control. Families are really annoying, trust me. My mom offered to move in with me after my surgery... Can you imagine, I just moved out to get away from her and now she wants to move in. I was a grown woman for crying out loud. Anyways, tell your dad, or call your cardiologist and tell him. This needs to be taken care of. Somethings in life can be put off till a later day... this is not one of them.

Hope to hear from you soon,
Ginnilea