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  • Next steps

    [Next steps]

    Author: Greg (208.187.247.---)

    Date: 11-12-02 13:54

    A quick overview of my health:

    36 - male - in great physical shape, diagnosed with HCM 2 years ago, identified as a high risk candidate for sudden death, an AICD implanted, asymptomatic, no meds, living in Boise, Id (I feel like I'm taking out a singles ad) LOL

    I had been running 12 -18 miles per week untill tearing my acl (dancing of all things) early this summer - ACL surgery booked for mid -december

    No one believes me when I tell them I have this disease and sometimes it's hard for me to believe since I am generally asymptomatic - I say generally because I do get tired mid-afternoon, on occassion light headed and palpitations -

    I just had my annual echo my doc. called saying my gradient has gone from 17 mmHg last yr to 50 mmHg currently and that I have hit the threshold for surgerical consideration -

    Yesterday we talked and she is saying that I will become symptomatic sooner than later and that when I do so she will begin treatment with meds.

    She essentially said she would like to put surgery off as long as possible and that nothing will change in my current treatment - I show up for a batt. check every 4 mos and an annual echo.

    She says no more competitive running and stay hydrated -

    She has sent two patients to Texas I have no idea where - who have had Septal Ablations with positive results - so far. She said she would develop a list of surgeons that we could consider when we got closer -

    Based on what I've mumbled thoughts on next steps?

    I suspect a recommendation for a specialist will be made. Based on where I'm located please be specific.

    thanks a ton

    greg

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

    [Re: Next steps]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-12-02 16:07

    Greg -

    Step one - get to an HCM specialist.

    Step two - You may benefit from medication sooner ... you need to allow your heart to relax and it is not able to on its own... the longer you let it stress the more damage you can do.

    Step three - DO not compare yourself to her "other patients"... while septal ablation has its role it is NOT a one stop shopping treatment...there are MANY variables to concider. Your age is a big one... most HCM docs would not recommend an ablation at your age as there is not enough long term follow up.

    Step four - NO RUNNING - -the fact your doctor is just now telling you not to run worries me..that should have been the 1st thing she said.

    Lets just start there for now.

    Welcome again and we hope to see you here on the message board often!

    Lisa

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

    [Re: Next steps]

    Author: Greg (208.187.247.---)

    Date: 11-12-02 16:12

    actually she told me to quit competitive running which meant to me no more racing . . .

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

    [Re: Next steps]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 11-12-02 17:50

    Dear Greg,

    Lisa forgot to mention that you should be calling her at 973-983-7429 to get hooked up with a specialist. She will be out of town Friday to Wednesday, so call NOW.

    take care,

    Sarah

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

    [Re: Next steps]

    Author: Greg (208.187.247.---)

    Date: 11-12-02 18:46

    I sent her an e-mail asking that very question.

    I appreciate the information and guidance -

    what about hot tubs saunas? yea/nay

    alcohol and caffeine are out?

    where do I draw the line on physical activities?

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

    [Re: Next steps]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-12-02 19:18

    Dear Greg,

    Your safest course of action is to back the workouts down to walking and yoga until you get the OK from a specialist to do any more than that. Everyone is different and there are no hard and fast rules except no competitive sports. Listen to what your body is telling you and don't push. You will probably be able to do some stuff, but I obviously can't tell you what or how much for how long.

    Hot tubs/saunas are a BIG NO NO. Very dehydrating. very bad.

    Ditto alcohol, caffeine and tobacco. all no's.

    Avoid super cold drinks, heavy meals, grapefruit juice, ephedrine, ephenephrine, decongestants, any over the counter "non-drowsy" formulas. If you need cough or cold medicine, get plain anti-histamines or see your doctor for Claritin regular. No stimulants!

    Hang in there,

    Sarah

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

    [Re: Next steps]

    Author: Jason (---.ushwy1.com)

    Date: 11-12-02 19:44

    Hello, I have my echo and mine says I have a "Doppler through the aortic valve reveals normal peak flow velocities through the valve with a moderate left ventricular outflow tract gradient with an estimated peak gradient up to 51mmHG" That sounds like what you have, & my doctor, my cardiolgist, has never said any thing about surgery or even showed any concern. I wish I could read my echo, I can hardley make out one number on it. "Left Ventricle (LV) End Diastolic Diameter 5.5 cm" Thats about all I can make out on mine.

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

    [Re: Next steps]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-12-02 20:36

    Dear Jason,

    Call the office and ask them to mail you a legible copy. You are entitled to it. It is the septal and ventricle walls that are important, not just the chamber size.

    Are you seeing a specialist?

    Sarah

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

    [Re: Next steps]

    Author: Jason (---.ushwy1.com)

    Date: 11-12-02 20:42

    They dont have a good copy. Thats the problem. I was supposed to call lisa when I got it but you cant make it out. I guess the doc. thinks he can?

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

    [Re: Next steps]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-13-02 01:15

    Dear Jason,

    You NEED the echo report or you need it done again by someone who can produce a legible report. Rattle whatever cages you need in order to get the original or get the people who produced the original to create a legible copy. I've been having an echo every two years or less for the last 20 years and I've never had this happen to me. Don't take no for an answer. If you can't read it and the front office can't read it, who can???

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

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