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meggy8868 retired teacher; had my first echo which indicated HCM in 1999 but was not told I had the condition. Find out more about meggy8868
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  • meggy8868
    replied
    Everytime I have called there, his office manage, Vikki Pink, r tells me that I am not his patient. If I call Dr. Sorajja's office, am told the same thing. I know after reading John M that he strongly advises lifestyle changes and to not go into this too quickly. I am not doing anything until I have peace about the decision.

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  • gfox42
    replied
    Hi Meggy,
    About the password stuff, call Lisa. She'll straighten it out. I had issues too.

    Yes, AF ablations are complicated in people with HCM. I'm facing one too, and the strong advice I got (from Lisa and Dr. Lever) was to have someone experienced with HCM do it. I'm scheduled for it in a few weeks in Cleveland.

    Why don't you call Dr. Maron and ask who he'd recommend?

    Gordon

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  • meggy8868
    replied
    It is so weird, I can't log in with the meggy 8868. So when I ask for a new password, it tells me I am a new person even though my identity infor is correct. Yet, somehow I squeaked over here and am replying to myself though not logged on under this name. There are som bugs in this new system.

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  • meggy8868
    replied
    Jill, thanks for your response and your very generous offer of private nurse. This is the first time I have been able to get back on since my last attempt.

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  • meggy8868
    replied
    It has taken awhile to get back because of new formatting and also awaiting a visit with Minneapolis Heart. I saw Dr. Sorajja. Dr. Maron was snowed in in Boston on Feb.8th. I had an echo, stress echo, and MRI. It was concluded that since I did so well on the stress echo, provoked gradient of 57 (I lasted about 10 minutes and it went well),that myectomy would have limited benefit but that my afib needs to be treated. An Af ablation is scheduled for Aprll 8th with a brief consult the day before.
    So, now reading various posts on afib, I am very concerned about an AF-ablation. I didn't realize they were not so routine. The EP I am scheduled with in Mpls in Dr. Melby. Lisa said I need one experienced in HCM hearts. Well, all I could get from the nurse was that he was very experienced at ablations, didn't know about HCM. Since I have had AFIB 4 x's including the one on the way home from MPLS, a very brutal event, Feb 9th with an experience in the ER which can only be labeled, evil. I can usually bring myself out of them with water and more atenolol. What I am inferring from reading lots of posts is that procedures begat more procedures and that AF ablations usually result in more AF ablations. I feel fine if I live a quiet life and not doctoring or running around. I like my life of doing nothing. I went from dead line to deadline in the early years and raised 4 kids alone and kept the wolf diligently three feet from the door all by myself. I have had many successes but now don't want medical interference and I don't want to be treated like a second class citizen for refusing. Thoughts? I didn't really even want to go to the specialist in the first place. The visit was very stressful, the drive, dodging blizzards. I am 74 and want to die naturally not necessarily dependent on medicine and procedures..

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  • JillC
    replied
    Meggy, I tried to search for the topic and had difficulty also. Why don't you go to the myectomy stream on the forum and ask some specific questions and I'm sure you will get some answers.... Let us know when your surgery is scheduled so we can send good vibes your way.....I am 18 mos post redo myectomy at Mayo and Yes, it was worth it...... also feel free to PM me if you like....We're here to support you on your journey. Here is My experience concerning some of your questions:
    I was home alone after my myectomy by choice .....I recover better without people hovering...I did have my daughter buy groceries of easy to fix meals and stock my refridgerator. Which, you may find a friend to do or even phone in your grocery order and have it delivered. You are not allowed to drive for 4 weeks minimum.....maybe 6 So plan for that. Establish your go to phone numbers and email for surgeon and cardiologist so you can ask the inevitable questions during recovery.
    My Portion of the bill with Medicare was about $1200.00. At Mayo there is a surcharge for a private room ( well worth it!!) which Medicare doesn't pay. And you have a daily co-pay of a couple hundred dollars for the first 5 days..... But yes, read your benefits.
    If I had a larger bank account....I'd fly out with you and come be your health advocate buddy....However, being an RN for 40 years.....when I was at Mayo I found that I didn't even feel like I needed an advocate ..... They were so on top of things, so highly educated, so thoughtful and resourceful and responsive to my needs and questions.
    Keep us posted
    Last edited by JillC; 01-19-2016, 01:20 PM.

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  • meggy8868
    replied
    Hi, I knew there were blogs or messages on how to pack the suitcase and what to do pre and post but I can't find anything. So much for being a techo-helpless.

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  • gfox42
    replied
    Hi Meggy,
    Overwhelmingly, the negatives are from people having them from inexperienced surgeons.

    Gordon

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  • mbcube
    replied
    Its not so much of an "archive" but through trial and error & playing with terminology it shows links to posts with key words. I did like the prior version too, but I'm learning!
    You do not have permission to view this gallery.
    This gallery has 1 photos.

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  • meggy8868
    replied
    Thanks Marc: I tried to find the archives under search and couldn't. I am not used to this new setup. I suppose the first thing is to see if it is covered by insurance, if not, then it is another story.

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  • mbcube
    replied
    Meggy - There are TONS of posts here detailing peoples costs, experience, travel, etc. Use the search features here. (top of this section)
    To answer your questions (in order) Its hard to put a number on it as everyone has different expectations and personal results. Overall, I'd say those done at a COE, most would say 98% positive experience (actual surgery & stay) and most - perhaps 90%, feeling better over time, with 80% stating that they are very much improved. The negatives may be because they had other health issues or the surgery was not performed at a COE. I can't answer the Medicare issue, but I'd check your plans for their co-pay and limits. Its best to have someone stay with you the first week or even two. You are very week, but most healthy folks can bathe, toilet and take care of themselves the first week (requires planning - Meals, meds, clothes, travel). Your insurance may cover a visiting nurse or a Home Healthcare Provider on a temporary basis (may require a doctor's note). Three most important things - rest, walk, breathe. When you search around here, you'll see just how fast people heal and most report able to do normal tasks within 3 or 4 weeks, and returning to work full-time by 8 weeks.

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  • meggy8868
    started a topic myectomy:

    myectomy:

    Has anyone had this surgery who felt that it was a negative instead of a positive improvement? Also if Medicare insured, with supplement, how much were the costs left over for the individual to pay? Is it possible to recover without home help? What are the absolute musts to remember. I know, many questions but very fearful of this procedure as I don't have a health advocate near me.

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