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  • Im 18 and need to know more

    [Im 18 and need to know more]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 03-26-02 23:41

    hi, I am an 18 year female and i was diagnosed with Hypertrophic cardiomyopathy about 10 months ago. I live in Western Australia and I am an apprentice chef. I also get Angina because the thickening is blocking the blood from getting down some of my ateries, i am on a medication called "Metoprolol Tartrate (Minax 50) " is anyone else on that or has anyone else heard of that? I take 100 grams twice a day. I still suffer chest pains, shortness of breath and trouble breathing. I guess i just need more information about everything, please try and help.

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    [Re: Im 18 and need to know more]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-27-02 14:22

    Dear Kasey,

    You have come to the right place. I took metroprolol for several years. It is a beta-blocker, which is a type of medication that slows your heart rate, can lower your blood pressure and reduce palpitations. If that dose is not working for you, please talk to your doctor about increasing the dose or switching to a different beta-blocker to help reduce your symptoms. Also, some people get breathing problems from the whole family of beta-blockers, so be sure to talk to your doctor about whether your breathing problems are due to cardiac insufficiency or a side effect of the medication.

    intellihealth.com and mayoclinic.com both have drug info databases where you can read up on all of the beta-blockers and heart medications.

    HCM is usually genetic. If you have siblings or children or parents, they should be tested if they haven't already.

    If you e-mail your mailing address to the HCMA office, they'll put you on their mailing list.

    How are you otherwise?

    take care,

    Sarah

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    [Re: Im 18 and need to know more]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 03-27-02 19:35

    Hi. I am a 23 year old female who was also diagnosed with Hyertrophic Cardiomyopathy about 10 months ago. My doctor started me out on a beta-blocker called atenolol but I didn't notice any benefit from it, like you, I also still suffered from chest pains, shortness of breath, dizziness and well everything I've always suffered from. The only effect it had was the cause of drowsiness. Which was a side-effect that could be expected while my body ajusted to the medication, but after many months I still had no energy. I'm off the beta-blocker now and I'm just starting a calcium antagonist called veramil. I have to wait and see if it works, but I guess what I'm trying to say is that maybe the drug you're taking now, isn't right for you.

    Or, like Sarah said there are a large varity of beta-blockers to try.

    I'm not the best to give advise, as I've just been learning about this condition myself, but I think talking to other people and asking your doctor more questions can only help!

    I'm also learning alot by just surfing the internet and reading as much as I can about HCM.

    Good luck!

    Brie

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    [Re: Im 18 and need to know more]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 03-27-02 20:33

    Hi. thanks you guys for replying, none of my family have HCM they have been tested already. its kinda weird being the only family member with it. i guess if someone else had it i wouldnt feel as weird.

    I still feel tired all time and i pretty much feel im losing interest in everything work included. I just want to know whats going on with my body and my head and just me?!?

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    [Re: Im 18 and need to know more]

    Author: Sarah B. (---.dsl.mindspring.com)

    Date: 03-27-02 23:36

    Dear Kasey,

    Even though two of my family members have it, I still feel alone sometimes b/c my mom is not capable of being supportive around it and my brother doesn't take care of myself. So I don't get any much understanding around making healthy choices (low stress job, not doing too much, etc.).

    I think joining the HCMA would be good for you b/c they can hook you up with people your age with HCMA that you can be pen pals with and maybe even help you find some Aussies with it, too.

    Please talk to your doctor about your symptoms, as when this is treated properly, a mild form of HCM should be well controled by the right medications.

    Keep us posted,

    Sarah

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    [Re: Im 18 and need to know more]

    Author: Amy Woods (164.119.203.---)

    Date: 03-28-02 09:15

    Kasey,

    I was diagnosed at age 16 but did not become symptomatic until I was 18. My health went down hill fast! I had chest pain, dizzy spells so bad I would black out and fall to my knees, shortness of breath, etc... The doc's had me on several different medications and inserted a pacemaker when I was 20. None of that worked for long so at age 24 I had a septal ablation (alcohol ablation), which is a simple procedure (basically just a heart cath.) that is very noninvasive. I am 200% better now. I'm on no medications and the pacemaker has been shut off. I also have no symptoms, the only limitations I have are due to being out of shape!

    I wish you the best, I just wanted you to know there is hope!

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    [Re: Im 18 and need to know more]

    Author: Glen (---.com)

    Date: 03-28-02 09:43

    Hi Kasey

    I know the feeling of dealing with this alone and I hope we aren't scaring you. The path you have to follow now will be challenging and hopefully be a long one and will ultimately make you a stronger person, I know it did for me.

    What they know now and what they knew 30 years ago when I was diagnosed at 22 is night and day. With proper care and meds there is no reason why you cannot control this.

    This has come down thru my fathers side of the family, he past 32 years ago at age 43 and several other family members did of apparent heart attacks, but back then HCM was unknown so the cause of their deaths is speculation. But there are no other members from my side of the family left, only my daughter who is 21 and OK, got her heart genes from my wife I guess.

    So there were no other family members to confide in and I did not know of a single other person who had this until I found this site a couple of months ago.

    Because of my family history and the lack of knowledge when I was diagnosed, they had no idea what my future would be, I was so scared I had several panic attacks that first year and if anyone has those, you are convinced you are going to die.

    But I got past that after a year because my meds worked and I was able to do moderate exercise and have lived a good normal life since. I try to avoid what my triggers are, that being excessive alcohol and big meals, when I have been bad and partying too much I still get a short bout of irregular heart beat and palpatation, so I just shut down and relax and it goes away after an hour or so.

    I have been part of a study for 30 years and go back fairly regular for rechecking and my HCM has not changed over that period.

    Seems like in most cases when you reach maturity, that's as bad as it gets.

    So you need to find the meds that work for you and keep after your doctor to try others if they don't seem to be working. See if you can do low to moderate exercise, anything to strengthen the heart and make it work more efficiently, avoid excessive alcohol and do whatever else your doctor recomends.

    Good luck & stay well

    Glen

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    [Re: Im 18 and need to know more]

    Author: Kasey Wookey (---.per.openaccess.com.au)

    Date: 03-28-02 11:33

    thanks guys thisis by far the best thing i have ever done(left a message here)

    umm.. my job is an apprentice chef which obviously is a very stressful job at times does anyone think that may affect what I have? Is anyone else in a stressful job and they are ok or should i start re thinking mycareer options? im scared im going to lose everything hey. i just yeh... dont know anymore. I hate this being alone. none of my family or friends have this so its scary that they dont know what im going through or how im feeling.

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    [Re: Im 18 and need to know more]

    Author: beckley (---.dsl.mindspring.com)

    Date: 03-28-02 11:46

    Dear Kasey,

    For some people, stress can make their symptoms worse. My ex-husband was a pastry chef, so I know a little bit about how hard working in a kichen is, especially at 8 pm on a Saturady night.

    I did leave a very stressful job that had become unbearable for political reasons after I got worse two years ago. I found my dream job, though, and it is less stressful.

    for your situation, you should talk to your doctor about different medications and treatments that may help you reduce your symptoms. If you don't think your doctor is up on HCM, have the office mail him a packet or call the HCM office to get a referral to an HCM expert. Don't toss in the towel just yet.

    hang in there and remember you are not alone,

    Sarah

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    [Re: Im 18 and need to know more]

    Author: Brie Rodighiero (---.dialup.sndg02.pacbell.net)

    Date: 03-28-02 14:47

    Dear Kasey,

    I know exactly how you feel. I've tried to talk to my mother about how scared I feel and try to get answers from her (she's a nurse) and she does talk to other doctors for me, but she doesn't understand how I feel. And the few friends I have told, are there to listen, but they have no idea how this is affecting me and I just feel like I'm wasting their time. I too, feel alone.

    But as we can see, by your simple message, weren't not alone!

    I'm as new to this site as you are, and I truly believe this kind of support will help!

    As for your career, I agree with Sarah. There should be a drug or some other type of treatment to help reduce your symptoms.

    Best of luck!

    Brie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Im 18 and need to know more]

    Author: david (---.tnt4.albuquerque.nm.da.uu.net)

    Date: 03-28-02 22:22

    Hi Kasey, I know how you feel, I too have a stressful job. I'm in the military and was diagnosed with HOCM in Aug 02. My condition is up for review for a medical board. My career in the military is most likely over. But there are other jobs in civilian life that I think that I will be able to do. I've slowed my lifestyle down alot, no more 5 mile runs and heavy weight lifting. The military still makes me work 5 days a week and sometimes 14 hour days. I do get tired easy these days with the meds that I take and with the condition. I tell the Air Force docs that my chest hurts and they tell me it's indigestion. The military doctors only see me as a number and not a person, now thats stressful. My job in the bomb squad does'nt stress me out it's all the b/s that the military feeds me. Sorry just letting off some steam. But I guess that's what's good about this forum. You can find great info and let off some steam at the same time. I hope that all will work out for the best for you.

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    [Re: Im 18 and need to know more]

    Author: Lisa (---.parnj1.netplay.net)

    Date: 04-02-02 20:43

    Just a quick note to all on this posting.... Thank you all so much for the support you have offered to Kasey, you have all made my dreams come true, this is what I live for... those with HCM helping each other like this. Kasey...I hope you know how many people in the world understand your situation and that you are far from alone!

    Best wishes to all...

    Lisa Salberg

    President HCMA

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    [Re: Im 18 and need to know more]

    Author: susan (---.taylor01.mi.comcast.net)

    Date: 04-04-02 11:57

    THANK YOU THIS IS MY FIRST TIME VISTING IT FEELS GREAT THAT IAM NOT alone

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    [Re: Im 18 and need to know more]

    Author: JULIE (---.proxy.aol.com)

    Date: 04-08-02 22:10

    18 or 50 being told you have HOCM can be devastating. I was told 2 months ago, the day before I turned 51. I have always taken pride in being fit; 5'4" & weigh 112 lbs forever. I jogged, swam, hunted, raised longhorns cows & hunting dogs. Now, I am told not to do anything more than a brisk walk. The Dr. wants me to be a couch potato -I do not like TV.

    I am on Lopresser 100 mg twice a day, it has dropped my heart rate but boy am I tired. Any physical exertion leads to dizzy spells, just grocery shopping can wear me out.

    I have cried for days, gotten mad, denied I could possibly be sick, my emotions have run the gauntelet. I do know STRESS can make all your symptoms worse!

    I still do not know what I am going to do with my life & my condition.

    I am going to Shands in Gainsville, FL for a second opinion & hopefully a few more answers. I have found jonsplace.org a very informative website; heartcenteronline.com. & acc.org.

    I read everything I can find but sometimes it helps just as much to grap fishing pole & set out for the creek.A day with nature can restore the soul & the heart.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Im 18 and need to know more]

    Author: Frank Myers (---.proxy.aol.com)

    Date: 04-16-02 11:16

    Hi. I am an older person but had your exact condition for 36 years. I am not a doctor but can tell you how those symptoms affected me and were treated, over the years. I am on metoprolol, a much lower dosage, because I can't tolerate as high a dosage as you. In addition, I am taking several other medications for the condition. Therefore, if you are taking just the one medication, ask your parents to have your cardiologist do a full examination of your medical needs. The shortness of breath, apparently, is caused by fluids backing up into your lungs because your left ventricular is not pumping well. With that experience, you may need to use several pillows when you lie down to sleep. I'm sure that you are aware of this. My enlarged heart condition was diagnosed as being caused by high blood pressure, among other things. Folowwing are the medicines that I take for my over all confition.

    A baby aspirin 18mg. to keep the blood from clotting in the heart because

    the ventricular isn't pumping well, some old blood may not pump

    out well.

    Spironalactone - 25mg. A potassium sparing water pill to prevent a depeltion

    of that electrolyte. As you may be aware, electrolytes

    keep all of the body's muscles functioning- and the

    heart is a vital muscle.

    Lisinopril - 30mg daily - I spread it out during the day because of the side

    affects. Example. 15mg in the AM and 15mg. at bedtime

    Lanoxin or Digoxin - 0.125mg - this is a very dosage but it helps with the

    double heart beats, angina and over all function of the heart.

    Metoprolol - 12.5mg. AM and 12.5mg. at bedtime,

    Furosemide - 60mg. I usually take this at 4PM daily. so that the excess

    fluids in my body and expelled before bedtime. To take this

    at or near bedtime will keep you running for the bathroom all

    night.

    Lipitor - 15mg. I take this for my arteries - which have some plack in them.

    Perhaps, at your age, you don't have this problem - I hope.

    Nitrostat - 2.5mg. I take this as needed for the chest pain you indicated - it

    is called angina.

    Be aware that these midicines are very very strong and only the doctor can determine what you will need and how to take them. I've learned, over the years, that I must follow all of the rules, no alcohol, very little or no salt in my foods and many other guidelines that the doctor will notify you of. I've also learned that I need two very good doctors, in addition to any other doctor I may ned for any other illness I may suffer. I have a excellent cardiologist (in fact I have 2 - one is near my home and another at the nearest University Hospital), and I have an excellent Internist for our family doctor. They can work together in keeping you well. Please give these facts to your parents and let them decide for you. Again, I am not a doctor so what may work for one person may need to be adjusted for another person.

    One last thing, I know that you are worried - as is you parents. Just a word of inspiration, I am a retired United States Air Force person and I came down with my condition shortly after I returned from Vietnam many years ago at age 33. There weren't many medications for this illness in those years and the condition was treated by hit and miss practice. As new medicines were developed, I and many others benefited from the new technological advances. Now, almost 37 years later, I am doing failrly well. I exercise 6 days a week and I keep my weight down - and that is very important. With the correct treatment, you will have a long life ahead of you. GOD BLESS YOU, YOUR FAMILY AND THE BEST OF WISHES TO YOU AND FAMILY.
    NOTE: This is a post from the previous forum message board.

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