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  • question about myectomy and cleveland clinic

    Thanks for the quick response to my last question. Can anyone comment on the following situation?

    A family member of mine lives overseas and has been told by visiting cardiologist from the states that he probably needs a myectomy. He is obviously not inusured and would be paying out of pocket for everything.

    His plan is to go to the Cleveland Clinic.

    My questions are as follows:

    1. How quickly would he be able to see Dr. Lever and do they schedule surgeries within a week or so thereafter? Are these sought after surgeons pretty backed up in terms of scheduling?

    2. How long should he plan on sticking around (3 weeks, 4 weeks?)

    3. Does anyone have a range of how much this could cost? I realize individual situations are different but a range would help.

    Thanks so much.

  • #2
    I'm sorry but I've never been through a myectomy so I don't have good answers to your questions. I think others will pop in here soon and help you. I think that if Dr Lever gets reports and tests from your relative's doctors and determines he needs to be seen soon, he can get them in within a month. Most patients are able to go home pretty quickly (a day or so) after they are released from the hospital. Hopefully you will get more answers soon.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      costs

      I believe that Felix's myectomy cost around 60k when I added up what
      they billed my insurance company. But the insurance company maybe paid only 1/3 of that at best. Knowing that insurance companies never
      full pay, maybe a deal can be made. though US hospitals try to get
      money anywhere they can now.

      sandy

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      • #4
        I believe that you can call the Cleveland Clinic ahead of time and find out approximately what the cost will be.

        (The price that Felix paid to NEMC would be different than what an uninsured person would pay to a hospital. Insurance companies pay a contracted rate. They charge uninsured people the highest rate).

        Call Lever's office and send them the records, figure out when you can have surgery, and have them refer you to the billing office. They will figure it all out for you.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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        • #5
          Supporter05,

          Call Dr. Lever's office at the Cleveland Clinic and make sure your family member talks to his secretary Karen, she is really great.

          Be sure to send them the FILMS of your family member's echos within the past 6 months -- Dr. Lever needs the CD disk or the VHS video tape of the echo or stress echo or both.

          You can also send the reports from the doctor but from what I know Dr. Lever will want to read the echo films himself.

          (And thank God he did for me, the cardiologists here in Phoenix have no idea what they saw when they read my echo.)

          I wish your family the best.

          Hugs,
          Eve
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.

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          • #6
            He should be able to be seen with about 1 months notice.

            The cost is around 60K - however you may want to have him talk to the finance people they do work with other countrys and there may be some funds available he is not aware of.

            He may want to stay state side for 3 weeks post procedure.

            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
              I just wanted to comment about how insurance companys pay less than half of what the hospital bills ,but an uninsured person would be responsible for the highest amt. It seems so unfair when medical expenses can be so much more than what the avg. american makes.you would think that if the hospitals can afford to do these procedures with what insurance companys pay.Individuals caught behind the eight ball should be offered the same deal.just venting ,but I think this is really unfair. take care mike
              One day at a time.

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              • #8
                Your post says you are in Boston. Not knowing the details of your family member and if they are already working with Cleveland Clinic, I'm wondering if they had the myectomy done in Boston if this would make it easier for them logistically and financially. Some here, I believe, have had very good reports of going to Boston (NEMC?) for myectomies. I don't have experience with that, but if having the surgery in Boston instead of Cleveland would help out, I'm sure others could offer thoughts on that as an option. Let us know. And best wishes, Lisa Inman

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