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Back from Mayo--joining the spring myectomy club

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Lisa Inman Find out more about Lisa Inman
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  • Back from Mayo--joining the spring myectomy club

    Hi folks--
    I had my evaluation at Mayo Clinic with Dr. Ommen. You told me to expect the best, but I was still amazed at how efficient, knowledgeable, helpful, and kind everyone was who dealt with me. That place is indeed really incredible.

    Dr. Ommen recommends that I have a myectomy, (given my 3cm septum and 144 gradient.) It's a scary thought, but I guess I was more afraid that he would tell me that it wasn't appropriate and I'd just have to go along as I am or worse, so cognitively I'm really glad about it. Emotionally it's hard--the HCM is so elusive, I feel like a very healthy person and it feels like a real disconnect to realize that it really is me that is up for this major surgery. Your support is a huge reason that I know I can do this. I am so appreciative.

    The cardiologists here at home had told me that I should have an ICD immediately because of my 3 cm septum, and then go on Coumadin because of some a-fib incidents. At Mayo, Dr. Ommen said that looking at my only having one risk factor for cardiac arrest (3 cm septum), my age, etc. that I had about a 1.2% chance of dying from cardiac arrest. However, the risks of having an ICD implant were also about 1.2%, so in my case it is a draw, and not appropriate. (Hooray....)

    For stroke risk/Coumadin he said that given that my 48 hour Holter (previously done in Washington) showed no a-fib that was happening unknown to me, and my known incidents aren't that many, he felt that the aspirin I take is sufficient (yay....). Dr. Ommen said that aspirin was 67% as effective as Coumadin. (I think I have the percentage right.) I think that is amazing. In a day or so I will start a thread about aspirin vs. Coumadin. But for me, now, I am so glad that he thinks I am fine on the aspirin. (He said research showed that one aspirin a day was enough, there wasn't gain by taking more.)

    I had a day and a half there and had 7 tests: EKG, blood, chest X-ray, 18 hr. Holter monitor, echocardiogram (very thorough--was there 2 ˝ hours I think), MRI (1 ˝ hour test), and treadmill stress test that measured oxygen consumption/delivery somehow. I also had a long consult with Dr. Ommen, about 2 1/4 hours that was very thorough and had time for my long list of miscellaneous questions.

    Initially they said a one day evaluation, but I asked if it would be best if I scheduled 2 days in Rochester just in case there was need for any more time--since the huge part is arranging to get there from out of state, flights, off work etc. Dr. Ommen said that would be ideal, so I scheduled my evaluation for Thursday, but when Dr. Ommen would also be available on Friday if needed, and I'd fly out Sat. Cost another hotel night, but I figured I'd be pretty fried if I turned around and flew back the very next day anyway. I RECOMMEND DOING THIS--it saved me. I was supposed to fly into Rochester from Chicago Wed. afternoon, start my tests at 7 AM Thursday. My flight to Rochester was cancelled due to high winds and tornado warning; then O'Hare was shut down all evening due to wind and thunderstorms. The airline arranged a hotel at a cheap rate for me, and we got out in the morning. So I didn't get to the clinic until 12:30 PM, 6 hours late. I'd called them and told them I was marooned, and Suzan said she'd get right on rescheduling. It all got rescheduled into Thursday afternoon and Friday, with a bit of juggling. I am so glad that I had given myself the extra day there--I used it all.

    Rochester logistics: you were right, it is a small quiet town with this amazingly huge clinic at the center of it. I stayed at the Best Western at Soldiers Field (4 blocks from the Mayo Clinic) primarily because they have a free van shuttle that will take you anywhere in Rochester, 5:30 AM to 11:00 PM--no need for a car, and free ride to and from the airport (saves $45 or so.) For instance, I walked up to the natural foods coop (The Good Food Store), ate and shopped, then called the hotel and their van came and picked me up and rode me back to the hotel. The Good Food Store has a wonderful vegan deli (I'm a meat eater who eats wholegrains, vegetables and other healthy foods.) Their food was like ambrosia after a day of airport food followed by 17 hours with only a protein food bar--due to fasting for a blood test and running about collecting my tests Thurs.)

    So I am trying to learn to say I AM going to have a myectomy rather than IF I have a myectomy. It doesn't quite roll off my tongue yet. Telling you is a big step, as I know you won't let me backslide.... I haven't scheduled it yet, but will be doing it right after school is out in June (I am a teacher.)

    So it's looking like we are getting a bit of a club here: Jim's mom's myectomy is tomorrow, Art Geddes in April, Eve in May, Vinnie maybe, Harry in May, me in June. Anyone else?

    Thanks for everything, I wouldn't be on this path without HCMA,
    Lisa Inman

  • #2
    Wow Lisa,

    You have accomplished a lot. I am so glad you have moved forward , it is a lot to twirl off ones tongue, the myectomy plan that is.

    I know that weird kind of disconnect feeling you verbalize. I think it is because we are all such a smart group and our intellect and quest for knowledge and understanding has helped hold us up against some of the fear and anxiety of this whole thing. What Lisa Salberg quotes is true, " Knowledge is Power."
    There is like this separation that occurs when we are asked to explain these things about our condition. I often seem to be listening and saying to myself( in my head) as I speak, " who are you talking about, I don't feel like the person or condition you are describing, I am standing here and this sounds serious ." It is a rather serial experience , having HCM. We look normal and we have some pretty big stuff going on.

    Well the best thing is that you are going to get some excellent help. Keep us posted , how all goes.

    Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      LOL @ Spring Myectomy Club!

      Ahhh, spring! The time of year when flowers bloom, birds sing, love is in the air, the sun is shining... and HCM'ers have myectomies.

      Lisa, i'm so glad you had a great visit with the specialists at Mayo. Sounds like your trip was every bit as productive as you had hoped, and even more so. We all couldn't be happier for you. Be sure to let us know when you have a firm date for your surgery so we can all help you get prepared for the big day.

      Take care,

      Jim
      "Some days you're the dog... some days you're the hydrant."

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      • #4
        Lisa-

        GOOD LUCK! They will take great care of you @ Mayo, they were wonderful to me. Who is your Surgeon?
        It's interesting to me, that it sounds like several folks go for pretesting & then go back for their Myectomy. My cardiologist there was Dr. Nishimura, he had received all my records & indicated to my "home" Cardio that there was "no doubt" about me needing a Myectomy immediately" I had my pretesting done Mon & Tues, my Cath on Weds & Myectomy on Thurs. I had less time in between to worry.
        I strongly suggest staying @ SpringHill Suites, across the street from St Marys. It's much easier for any Family/Friends to just walk across the street, while you're in the Hospital. There are several restaurants, within walking distance & also the free shuttle, plus should anyone need a cab, they do park in front of St Marys.

        Again, Good Luck-you're in my thoughts.
        RONNIE

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        • #5
          Ronnie, I think it is usual to make the evaluation testing and myectomy all in one visit if that's what works in one's schedule.

          Mine is two trips because I teach school and really don't want to miss the end of the school year (I'm fortunate, I actually like my job ) Dr. Ommen said that there wasn't a hurry, and that under usual circumstances I should be able to have the myectomy in mid-June and be able to be working full time 10-11 weeks later--still a concern of mine since the beginning of the year is the most important time to "get it right". But I have 3 wonderful assistant teachers who have worked as a team together with me for years. I've warned them that come September if this "brain fog" I've heard about is present they may have to prop me up in the corner, steer me around, tell me what to do, and otherwise make me look good (as they already do...); even "jokingly" told the administrator that they might need a raise... Any rate, that's why I am doing the evaluation and the surgery in two phases.

          In a way I'd like to just get in and get it over with and not have to contemplate it for so long. But given that I want to do it this way, I'm trying to turn the contemplation into a good thing, plan well and do all that I can to have my body and energy in top condition. I have an appointment tomorrow with my chiropractor, who is an excellent resource on wholistic health, to ask her ideas on how best to prepare my body for the physical stress of surgery, anaesthesia, heart/lung machine, and healing. And with this goal and with daylight coming back to this northern place (yahoo!!) I'm working at walking more again.

          While I was walking by, I looked into the Holiday Inn Staybridge Suites, next door to the Springhill Suites, for the same reasons you mention. If my husband has to hang around and worry and/or fill up time, I'd like him to at least have a nice and convenient base to do it from. It is across the street from St. Mary's, nice rooms with full kitchenettes, work desk, sofa, DSL, etc. Parking garage if we rent a car. A very complete breakfast buffet and access to coffee, milk, juice etc. all day each day. A few days a week supper type food. Laundry facilities. Etc. all at no addition cost over room charge. I got the room rates at Springhill, but didn't have time for the tour. They are about $10 cheaper a day--any idea how they compare as far as what they offer?

          Thanks! Lisa I.

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          • #6
            Lisa - I am very happy that you had such a positive visit. I know the path has just begun...but you are on the way!

            Hang in there and know that we are all here for you!

            Best wishes,
            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

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            • #7
              Hi Lisa,

              Best of luck with your upcoming myectomy. Keep us posted on all the developments leading up to the surgery.

              Cheers,

              Paul
              Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

              Comment


              • #8
                Lisa-
                It's great you are using your time so wisely to prepare. Springhill Suites , was very nice. Bfast in the am, fridge & microwave (I don't remember if there was a cook top. There is a separate living room with a sofa, chair, coffee table & desk (my husband was able to work) & free internet access. Small swimming pool downstairs (outside) Lobby has TV, Bfast area, newspapers & magazines. There's a small store about a block away where we bought drinks & snacks. The staff at the hotel is just as considerate & kind as the staff in the hospital. Also I'm almost positive free parking-we did not rent a car. My husband became very bored.
                Any other questions?
                RONNIE

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