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  • I am confused!

    [I am confused!]

    Author: mary s (---.net157.fl.sprint-hsd.net)

    Date: 07-09-02 22:41

    I am really confused! About six months ago I was diagnosed with HCM. I was a very active 21 year old when this happened. It was nothing for me to work sixty to seventy hours a week and go to school part time. But things went really down hill from that point. I had a sinus infection and had gotten antibiotics from the doc. The next day I was having chest pains and shortness of breath so I went back to my Dr.. He said that I was just having an anxiety attack even though I had an abonormal ekg. So he gave me some paxil, xanax, and a shot of valillum and sent me on my way(needless to say he is not my dr.anymore). Two days later I was at work and talking with my boss when severe chest pain overtook me and put me on my knees. He immediatly called 911 and they asked me what I was taking so I told them the anti-depressents so they started treating me for an anxiety attack. Finally, I requested to be taken to the hospital after my hands had turned blue and I was freezing after 20 minutes of walking in the back. When they finally put on an EKG in the Er they realised I had something wrong so they did everything Echo,stress test, and catherization. My septum was 2.0 cm(I think). My cardiologist started me on Toprol but I have asthma and it didn't go well with the medicine, then verapamil but that lowered my blood pressure to the point that I had to take fludrocortisone just to raise to almost normal, then they tried norpace it really didn't help it all, Now they have me on cardizem which seems to be helping. The thing is my whole life has went down the drain I had to drop some of my classes, I can only work maybe six hours a day (thirty hours a week doesn't pay many bills), and I can forget about the three flights of stairs up to my apartment. So my cardiologist sent me to Shands at Gainesville to see if I am a candidate for septal ablation. I saw the doc there and they ran their sets of test and say that my septum is like 1.6 and I have no gradient so it is not HCM. She believes that I might have coronary artery spasm and that is what is causing my episodes. My cardiologist down where I live says that it is definatly HCM so now they want me to go through everything again including the catherazation. I have been admitted into the hospital eight times with severe chestpains. (my enzyme levels are always elevated is this normal for HCM?). I cannot go on like this I have school starting back in a few weeks and I really do want to get my certification to be an EMT. Do you think there is anything that can be done to help me get to my goal?

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    [Re: I am confused!]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 07-09-02 23:10

    Mary,

    By all means you need to get to a specialty center. Call Lisa here at the HCMA, she knows alot of the specialists and should be able to help you find the right doctor. I know I have classic HCM, but I still feel alot more comfortable knowing that I have an appointment to the Cleveland Clinic. I want to be certain I have all my answers before I do any surgery. Also, remember if you go somewhere that has more experience, there is a better chance they have seen similar cases.

    I understand what it is like to be going downhill quickly.

    Best of Luck

    Jerry

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    [Re: I am confused!]

    Author: mary s (---.net157.fl.sprint-hsd.net)

    Date: 07-09-02 23:18

    Thanks for the reply. I really feel like I am doing this alone! I am tired of my drs. bickering over which one is right. The cardiologist in Gainesville said that I definately was not a canidate for surgery or ablation. I just cannot find much information on the coronary spasms that she is talking about. The only things I can find are about artherosclerosis which I definately do not have (total cholesterol 107).

    thanks,

    Mary

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    [Re: I am confused!]

    Author: Glen (---.com)

    Date: 07-10-02 08:38

    Hi Mary, 21 was about the age I stated having symptoms also, prior to that I was running 5 miles a day.

    Late teens, early 20s is a pretty common time for HCM to raise it's heads and let you know it's here.1.6 - 2.0 cm septum is thicker than normal which in my case is 1.1, mine in fact is 2.2 and I also have no gradient which usually means you have HCM without obstruction, which is better than with.

    My guess is your doctor who says you have HCM is correct, but it also sounds like you need an HCM specialist to confirm and get you on the proper meds.

    Call the HCMA office and they will steer you to a specialist.

    I am now 52, live a pretty normal life, I don't run any more, but I do moderate exercise by riding bikes.

    Good luck and stay well.

    Glen

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    [Re: I am confused!]

    Author: CRaig (---.dsl.sfldmi.ameritech.net)

    Date: 07-10-02 11:12

    Mary,

    I am sorry to hear about your situation. While not as severe as yours, I am 31, will be a new dad in a month, and will get an ICD put in me a few weeks later. This stuff is not fun at all -- especially when it strikes at a young age.

    As far as the enzyme levels being high, my experience was similar after going to the hospital twice last year within four months for chest pain. My Troponen levels were around 3 (which is higher than normal as you probably know.) AFter first being diagnosed with a heart attack, now my HCM specialist from Cleveland (Dr. Lever) says I had "enzyme leaks" or "infarctlets." My understanding is that these are very minor heart attacks where heart muscle cells at the microvascular level die off because the septal muscle is too thick for the veins to get blood all the way through. The actual heart muscle damage, in my case anyways, is not observable in an echo or stress test, yet it is there somewhere.

    I don't know what your enzyme levels were, but this was my situation. Go see a HCM specialist to find out more about your situation. Dr. Lever at Cleveland is a very good one, though also a very busy man.

    Best of luck,

    Craig

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

    [Re: I am confused!]

    Author: Sarah B-Board Moderator (---.tnt3.chiega.da.uu.net)

    Date: 07-10-02 23:10

    Dear Mary

    Please call the HCMA at 973-983-7429. Lisa can hook you up with an electrophysiologist who can tell you what is really going on and let you know what kind of options there are for you in terms of medication and procedures.

    This is without a doubt the hardest part of any heart condition: the beginning. Anger, denial, depression and the like are probably all going to rear their heads at some point during this time and don't be afraid to lean on your support system while you get through making some adjustments to your life.

    Now, more than ever, it is important to eat well and do mild exercise like walking and yoga. Also drink tons of water and don't eat big, heavy meals.

    The majority of HCM patients live normal lives after getting their condition stabilized with medication or surgery. The sooner you see the right doctor, the sooner this will happen.

    we have all been through this and it is ok here in HCM-land. Life can be trickier and more complicated sometimes, but just as good.

    keep us posted

    Sarah

    (ps I'm 33 and was diagnosed at 13)

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

    [Re: I am confused!]

    Author: mary s (---.net252.fl.sprint-hsd.net)

    Date: 07-13-02 22:38

    One more thing that I am confused with is my dr. in Gainesville (Dr.Karen Smith) is telling me that I am having coronary artery spasms which are causing my symptoms. Can anyone enlighten me on this? And also does anyone out there know if Dr. Smith is considered a specialist for HCM. I know she studied under Dr. Spencer for Ablations but as far as HCM I haven't heard much. Thanks for all of your help and input. It is really nice to know that I am not the only one with this.

    Mary S.

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

    [Re: I am confused!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-14-02 11:45

    Mary -

    I think it is best to answer your questions over the phone...things get rather complex and the message board is not the best way to communicate evey detail back and forth.

    While there are many wonderful doctors in Gainsville it is not a specialty center for HCM, Dr. Smith has treated several members of the HCMA, she was trained by Dr. Spencer. Many of which speak highly of her.

    HCM is more than a condition of obstuction, it is a disease of cell structure and treating only obstruction is not the answer, the whole patient must be treated. many people with obstruction having undergone treatment - myectomy or ablation - still have symptoms, albeit they normaly decrease after a procedure---but they still have HCM.

    If you are not obstucted there are no surgical/nonsurgical treatments that will reduce symptoms.

    Call the office and we can talk.

    Lisa Salberg

    President

    HCMA
    NOTE: This is a post from the previous forum message board.

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