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  • HOCM inquiry

    [HOCM inquiry]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 09-28-02 13:02

    Hello! This website is a gift from the Lord above. Thank you to each and every one of you who has taken the time to share your stories, knowledge, feelings and experiences. I feel hopeful and full of faith now that I have a place to come to each day for support and true encouragement!

    My father was diagnosed with HOCM 7 years ago when he was 51. He has HOCM with slight mitral regurgitation, irregular heartbeats (murmur), and HBP. Today he is feeling tired all the time and says he feels "incapacitated." He says that after walking to the mailbox he feels as though he just completed a marathon. This past Monday his cardiologist had him come in for a cath to see if he was a candidate for the septal ablation procedure. He is! His doctor however had no bedside manner and we found him to be quite discouraging. He basically said that he didn't care one way or the other if he went for the procedure and that he highly doubted that my father's insurance company would cover the procedure. He said United Healthcare is cheap! We live in North Carolina so he recommended a hospital/specialist in Charleston, SC who specializes in the septal procedure. Has anyone had the procedure performed there? Anyhow, the good news was that he didn't see any blockages!

    Dad is fearful in that the procedure will worsen his heart. He claims that he read somewhere that the septal ablation generally worsens the heart muscle leading to future heart attacks. I have not come across this information anywhere in my studies and I tried to inform him that if he is going to do some research on his own ... to make sure the articles are not outdated. He doesn't realize that a study done in 2000 - 2001 is already out of date! I know this having a BS degree in Health Science, (Health education), and out of common sense. Again, he is also fearful that his insurance company will not cover the procedure but as I have read on this site ... he can always appeal. I would think that an HCM specialist who has performed numerous ablations would be under most plans. (BTW - he has a modified HMO.)

    My mother and I would love for my dad to find a reputable HCM specialist. I will call Lisa on Monday and if anyone can personally recommend an HCM specialist in NC … that would be fantastic! My parents reside in Cary, NC which is 20 minutes from me ... I reside in Durham, NC. My dad is happy with his cardiologist but my mother and I are not. He doesn't educate or motivate my father and generally leaves him feeling down after his visits. My mother has rheumatoid arthritis ... so I asked my dad, "would you rather mom went to see an allergist or a Rheumatologist for her condition?" When I worded it that way he saw my point! Thank goodness!

    Well, thanks for reading and listening and I look forward your replies!

    Best wishes,

    Erica

    PS- I went for an echocardiogram last week and I did not inherit the condition.

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

    [Re: HOCM inquiry]

    Author: Dolly W (---.proxy.aol.com)

    Date: 09-28-02 18:30

    Hi Erica,

    That's great news for you! I have HOCM and was offered septal ablation, but decided against it because 1) septal measurement should be 1.5 cm or greater (Lisa, Sarah, correct me if I'm wrong) 2) the procedure had never been performed at this hospital or by the physician doing the procedure (and I wasn't going to be the first)! 3) I decided that (for me) the risks outweighed the benefits.

    I know how your dad feels as far as limited physical activities. I haven't heard anything about septal ablation worsening your heart. However, there are always risks involved with any procedure. But this Dr. sounds kinda weird to me. What does he mean, he doesn't care one way or the other! As far as United HealthCare is concerned, I hope they're not too cheap, I'm getting ready to have a myectomy/ICD at Mayo/St. Mary's!

    I hope you find a specialist, and soon! Keep up the positive attitude!

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

    [Re: HOCM inquiry]

    Author: SB -Board Moderator (---.dsl.chcgil.ameritech.net)

    Date: 09-28-02 20:25

    Dear Erica,

    Please keep getting an echo every 5 years ---you can develop HCM later in life, especially since your dad wasn't tagged till his 50s. Better safe than sorry!

    As for the ablation, it is better to wait and see an HCM specialist as there may be other options for your dad --different medication or a myectomy, etc etc. He should also be evaluated to see if he needs an ICD.

    There are major HCM centers in Rochester, MN, Minneapolis, MN, New York, Cleveland, and Boston. Lisa can give you specifics when you talk.

    Your dad is lucky to have you. Hang in there!

    Sarah

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

    [Re: HOCM inquiry]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 09-28-02 21:23

    Hi Dolly. Thanks for your reply! Do you, too, have United Health Care as your primary health care insurance? If so, how they been with regard to paying for your procedures? I wish you a speedy recovery! Let me know how it goes.

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

    [Re: HOCM inquiry]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 09-28-02 21:30

    Hi Sara. I am definitely looking forward to receiving the information from Lisa. My father is so glad that I found this site (HCM assoc.)

    Is the Myectomy the alternative procedure to the ablation? Isn't this form of surgery considered invasive surgery where they cut out the excess lining of the heart? I was under the impression that this procedure was looked upon as the old fashioned method? Please educate me so I can pass this information along to my father. I wait with anticipation for him to see an HCM specialist! Thanks again for your reply and looking forward to hearing from you again soon!

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

    [Re: HOCM inquiry]

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

    Date: 09-29-02 00:17

    Dear Erica,

    A myectomy is where they cut back the top half of the septum when it is so thick that it is preventing the mitral valve from working properly. The "Myectomy Alumni" thread of 9/25/02 here will let you know that they are not obsolete at all.

    There are times when an ablation is a better choice and times when a myectomy is better and this is why it is so important to see an HCM specialist --so you can find out what will be best for your situation. Everyone's HCM is different.

    ALso, ablations have gotten popular and doctors who haven't done many may be itching to get experience --which is not the situation you want to be in. Regardless of which (if either) you go with, you want someone who has done lots and lots.

    (ps the septum is the wall inbetween the ventricles --see the overview on HCM in this web site)

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

    [Re: HOCM inquiry]

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

    Date: 09-29-02 08:02

    Hi, Erica,

    I can empathize with your experiences with cardiologists that don't educate, have a lousy bedside manner and are just plain apathetic when it comes to treatment and understanding of HCM! We have seen 2 different cardiologists after my husband was hospitalized and diagnosed in May of this year. My husband is very symptomatic, and his 'bad days' way outnumber his 'good ones'. On our last visit, the doctor told him that he wasn't convinced that his fatigue was due to his heart. (DUH!)

    If it weren't for my educating myself and this wonderful website, we would truly be lost in what to do.

    After being ignored, frustrated and sometimes, scared we know now the only place for true answers/treatment is with an HCM specialist. Next stop is Cleveland for us!

    Your day is blessed to have such an intelligent, loving daughter! Sounds like your Dad's cardiologist is more worried about not getting paid than your Dad's health. I'd fire him!

    Good luck to you!

    Karla

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

    [Re: HOCM inquiry]

    Author: Dolly W (---.proxy.aol.com)

    Date: 09-29-02 17:07

    Erica,

    Yes, I have United HealthCare, and so far, they have been pretty good about paying. However, I live in New Orleans, LA and I am traveling to Rochester, MN, to the Mayo/St. Mary's to have this procedure done. That's where the "problem" comes in. Because Mayo is an out of network provider, UHC only wants to pay 40%. My MD is currently trying to convince them otherwise.

    Myectomy is not the "old school" method - it is tried and true. Yes, it is an invasive procedure, but it can't be much worse than someone going through a bypass. I had an MD tell me that it was a "morbid procedure" and that I would have to spend a month in-hospital recovering. He just wanted me to be his first guinea pig for ablation! I RAN out of his office!

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

    [Re: HOCM inquiry]

    Author: Shannon (---.galileo.com)

    Date: 09-30-02 13:24

    Hi Erica.

    I just had the ablation procedure this past April by Dr. Willima Spencer. He did mine in Houston, but he is based in South Carolina (I can't remember what city.) He is one of the pioneers in this proceedure and has done well over 150 of them. My brother was one of the first 50 and is doing great! I am doing great too! I can't tell you what a difference this procedure has made in my life! If I could, I would nominate Dr. Spencer for sainthood! I'm not sure how far he is from you, but if he's close enough, he would be a GREAT one to go to for this procedure -- or even just to consult with!

    Good luck!

    Shannon

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

    [Re: HOCM inquiry]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 09-30-02 19:33

    Shannon ... thanks for your "POSITIVE" words. I agree with Lisa in that my father should see an HCM specialist. He also wants to go to SC to have a consultation with them too. He is open minded right now which is wonderful. He was against the ablation last week and he was against having to see a specialist last week, too! Now he wants to meet with both ... and will go from there! What a blessing this site is turning out to be! I wish you the best and hope to hear from you again. Keep me posted!

    Erica : )

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

    [Re: HOCM inquiry]

    Author: Elizabeth (---.fuse.net)

    Date: 10-03-02 11:13

    Hi Erica,

    I had a myectomy done last year at Cleveland Clinic and my insurance company, United Health Care, paid the entire bill minus a $500.00 deductible. I think it was PPO coverage and definitely in network. Both of those factors make a huge difference but why is the doctor so negative? I'd go to a specialist in your area recommended by Lisa. She's great for advice on dealing with insurance companies too!

    Good luck,

    Elizabeth

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

    [Re: HOCM inquiry]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-03-02 14:10

    Update ... my dad went to see Dr. Usher here in NC and his dad is chief teacher or the head of teaching at UMSC (?something like that?)

    Today he learned his septum weight is 3.0 - 3.6 and they are forwarding his paperwork to either Dr. Nielsen or Dr. Spencer at the UMSC for a septal ablation consultation. Sounds like if they offer it ... he will go for it! He is 58 so he has nothing to lose! I want whatever he wants ... whatever will make him feel better!

    The fact that he went in again today and had a cath the other week ... seems to me like he is FINALLY being PROACTIVE with his condition!

    I am so proud of him!

    Smile!

    Erica

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

    [Re: HOCM inquiry]

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

    Date: 10-03-02 14:53

    Erica - -I know your in a hurry... I may have written your CC# wrong can you call the HCMA office with the # again it will not go through. - I will send the book out today..on the honor system until I get the CC#.

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

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