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I want to go to Cleveland!

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sassydeborah My father died at the age of 26. My drs. believe that he suffered from HCM. Find out more about sassydeborah
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  • I want to go to Cleveland!

    Hi Everybody! Hope you had a good day.

    I was diagnosed in 2001, but was not aware that there are cardiologists that specialize in HCM until I found this site. My cardiologist is a member of "The Care Group in Indianapolis. The meds that I take, the tests that have been run, having an ICD implanted, etc seem to be the common treatments for this condition. However, I don't feel that I have been given much of the information that is available about this disease or that my questions are fully answered. The book that I was sent when I joined HCMA has been a blessing!
    I would very much like to go to Cleveland Clinic, but don't know how to bring it up with my cardiologist after all of this time. There are many heart surgeries performed at St Vincents Hospital and I'm afraid she will think that I am second guessing her! Any suggestions how to bring it up???
    Sassy Deborah
    Diagnosed with HCM 2001 at age 52
    ICD implanted December 3, 2005
    Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
    Myectomy performed at Cleveland Clinic Dec. 3,2008
    Father died at 26 (1952) suspected HCM

  • #2
    Re: I want to go to Cleveland!

    Well, you don't even have to tell her if you don't want to. Depending on your insurance, you can self refer. Call Dr. Lever's office at Cleveland and make the arrangements.

    If you do want to discuss with your doctor, just tell her that you would like to be evaluated at a HCM specialty center, and that you would like to go to Cleveland.

    It is your body, and you should have the ability to be treated at the facility of your choice.

    I personally love my local docs, but nevertheless, I self referred to Mayo Clinic last year for a myectomy, and I had to get my local docs on board with surgery. They were very supportive, and are very pleased with the results. I had to talk them into the surgery at first, but they ultimately came around and acknowledge that I took the best course of action for myself.
    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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    • #3
      Re: I want to go to Cleveland!

      Thanks, Cynaburst! I checked out my PPO on line. Dr Lever and the Cleveland Clinic are on the list. I may call and try to schedule an appointment. Like you, I like my cardiologist. Would just like to see a specialist at least once. I will post if I make an appointment.
      Sassy Deborah
      Diagnosed with HCM 2001 at age 52
      ICD implanted December 3, 2005
      Finally saw HCM Specialist (Dr Lever) Oct. 24,2008
      Myectomy performed at Cleveland Clinic Dec. 3,2008
      Father died at 26 (1952) suspected HCM

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      • #4
        Re: I want to go to Cleveland!

        sassydeborah,

        If you really want to go to Cleveland Clinic just find out what it takes to get you there then keep after your insurance until you get what you want. In the end, what got me there is my docs writing to my insurance company and telling them that if I go to Cleveland Clinic it will cost them less in the long run because there will be less post-surgical complications down the road.

        It's the number one heart hospital in the country. Possibly the world. They do so many myectomies there it is probably cheaper just based on volume... and they've seen every possible complication. Hang in there and keep fighting for Cleveland Clinic. We've seen way too many folks have myectomies at lesser hospitals, and they didn't get the best results.

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

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        • #5
          Re: I want to go to Cleveland!

          Deborah - The way that this should ideally work is that you should be able to go to a HCM specialty center every few years or when you are having significant issues, and then see local doctors all of the time for maintenance and follow up.

          The local docs should be able to call the experts whenever there is a problem that they feel is significant and they should treat you in tandem as a TEAM. Remember, this is not a competition to see who is the best doctor. Everyone should join together to achieve a common goal - your health.
          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.

          Comment


          • #6
            Re: I want to go to Cleveland!

            Hello everyone,

            As everyone know, I went to see Dr. Lever in September and is scheduled for the Myectomy in January 2008. I found out that my insurance which is BC/BS of Georgia HMO did not cover the cost of the appointment and refusing to pay for the surgery. I finally was able to talk to Dr. Lever's nurse on yesterday (after 3 weeks of trying to talk to my heart doctor here in georgia!) and she informed me that Dr. Lever is trying to move up the surgery date to a earlier date and he was very upset to hear the news about my insurance company and my heart doctor not returning my calls. He asked for me Heart Doctor name and number here in georgia and the number to the insurance company. He said that my doctor here should have had the pre-authorization done and did not do it and his nurse said that they will take care of everything.
            It is hard to know that you need heart surgery. Some of these insurance companies have no feelings and I'm just so sick and tried..... I can't even worry about the surgery, because I just recieved a $3,000 bill from the hospital because the appointment was not covered.
            Thank you guys for letting me vent, I know Dr. Lever's office will fix this problem, I just need to be patient and just focused on the upcoming surgery. I will let everyone know my new date.
            Meka
            HOCM Patient Myectomy January 25, 2008. Cleveland Heart Center ICD Implanted 1/31/2008

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            • #7
              Re: I want to go to Cleveland!

              Meka - Hang in there! Hopefully all of this will get worked out, but it is very stressful until then. Just try to focus on feeling better down the line, and try not to worry.
              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.

              Comment


              • #8
                Re: I want to go to Cleveland!

                Hey D,

                Good doctors welcome the advice of specialists. If your doctor balks at the idea of you going to an HCM specialist, it is a bad sign.

                Going to an HCM specialist doesn't mean you are breaking up with or cheating on your cardiologist--it means that you have a very complicated condition that would benefit from an expert opinion!

                My local doctor is a former past-president of the AHA and the head of the Cardiovascular Institute at my hospital. He is a big cheese! And I STILL go to the Mayo Clinic every few years for a check up or if I need something serious.

                Let your doctor know that you've found a support group for HCM and after reading about the condition you feel that it would be in your best interests to get checked out by Cleveland and you hope that they can talk to each other and discuss your care going forward.

                Good luck,

                S

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                • #9
                  Re: I want to go to Cleveland!

                  Deborah,

                  I was diagnosed in August and if you read some of my previous posts, you'll see that I've struggled with talking to both my PCP and Cardio about seeing a specialist. This past Friday I had yet another cardio appointment to adjust my meds once again and we finally broached the subject of surgery.

                  I started by asking how high a dose of atenolol we could reach and he said this is it, 200mg. I also take 240mg of Diltiazem. I still suffer from shortness of breath and chest pain, though the medication does keep my blood pressure and heart rate within acceptable limits.

                  So, our next option is surgery he tells me and Dr So and So (didn't quite chatch the name) at the University of Washington can PROBABLY do it. Probably? I ask about the Swedish Cardiovascular Institute that is affiliated with the Cleveland Clinic and he said that he wouldn't send me to Swedish because he doesn't know of any one who could do the surgery but is more than willing to send me to Cleveland. He even said he would go to war with my insurance if need be. This was definitely a relief. For months I've been feeling like he was not very supportive.

                  I also mentioned to him that at 42 years old, I'm still relatively young and would feel more comfortable having the surgery done by someone at a center of excellence. He seemed to agree but is reluctant to go to in depth about it until it's necessary. He also told me that he's never sent anyone the the Cleveland Clinic before.

                  You might approach the subject with him as a what if the treatment isn't working and what are my options. I don't know. It's definitely hard to get the docs to listen to you sometimes, I know. You need to be pro-active.

                  Hope this helps,

                  Annie
                  Last edited by Annie S.; 10-31-2007, 04:47 PM.
                  Diagnosed Aug 2007

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