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  • #1

    John Hopkins University

    Hello All,
    I have just found out from my insurance company that Cleveland Clinic no longer participates with CareLink ( my health provider). I talked with the insurance company and they told me that John Hopkins is an approved participant and that I could go there under my plan at 100%. Otherwise, if I stay at Cleveland they will only pay customary charges and after seeing my last bill we are talking about a lot of money. My responsibility for 1 check up is about $2,000. That means a total of $4,000 a year and hopefully if I have no other complications. Anyway, back to my question. Does John Hopkins have any HCM specialist there? I have HOCM and I am also very symptomatic so I really need a specialist to be looking after me. I will try to get with Lisa when she gets back but in the meantime just thought I would ask. You can email me privately if you wish. Thanks.
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  • #2
    Re: John Hopkins University

    Lisa may have some suggestions for you to get you back to Cleveland. Is that where you have been going? It's difficult to change doctors and facilities when you are comfortable with one. Maybe some others will be able to give you first-hand experiences with JHH and HCM. I can't, but would like to know also. How far would you have to travel to get to JHH? Is it local for you? Linda

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    • #3
      Re: John Hopkins University

      I've been going to Cleveland for about 3 years now and I really hate to change. I'm very comfortable with my doctor and here lately they have been discussing a myectomy, which right now I don't even want to think about. It scares me silly but if I have to end up having one I would definitely want it done at Cleveland after reading how great they are on this board! I have requested the forms to appeal to the insurance company and try to get them to pay a higher rate. I live in West Virginia so Cleveland is only about 4-5 hours away ( which makes it nice that we can make my appts. in one day) and I think John Hopkins would be further away not sure how much. Maybe Lisa could help me with the appeal forms? Lisa, when would be a good time for me to call, I know you've been extremely busy lately?

      Sue, I got your reply and thank you very much but when I tried to submit back to you I keep getting an error message.

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      • #4
        Re: John Hopkins University

        Got it despite the error messages. Thanks. Sue

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        • #5
          Re: John Hopkins University

          I go to Hopkins and see one of their top docs. He knows suprisingly little about HCM. I went to cleveland clinic for a second opinion and it was like night and day. Lisa can give you various speciality sites that may take your insurance - there are 5 or 6 that I have seen mentioned on the board. Stick with an HCM specialist and it will save you pain and suffering which is priceless. P.S depending on where you are in west Va. you could be talking as long or longer than your trip to cleveland. Give me a personal e mail if you want details of my experiences at Hopkins...
          Chuck B

          An inch is a cinch, a yard is hard

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          • #6
            Re: John Hopkins University

            If you have been going to Cleveland it may be easier to get the ins. co to allow you to stay there then if you had never gone before. I will be in the office on Tuesday call me we can chat about it.

            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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