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AnnetteP Find out more about AnnetteP
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  • Cleveland Clinic

    I am finally heading to meet with Dr. Lever at the Cleveland Clinic August 28th. This will be my first visit with and HCM specialist. I looks as if my non-hcm-specialist-surgeon may have caused more harm than good during my myectomy and mitral valve replacement last August, so I am glad to now have the insurance to see a “real” HCM doctor.

    If you know of any airline, rental car, or hotel deals I can look into, I would appreciate the info. I’m still not sure how we(my husband will be going with me) are going to finance the 1,800 mile round trip; but I made the appointment and will figure that out before its time to go. Things always have a way of working out.

    Wish me luck!

    Annette
    Annette w/Zapper, Zipper & Ticker
    Symptomatic 1987, Diagnosed 1999, AICD 2001, 2005
    Myectomy w/valve replacement 8/2007 (36 y/o)

  • #2
    Re: Cleveland Clinic

    Hi Annette,
    That's good news!

    One thing to check into -- the Cleveland Clinic has an office called, if I remember correctly, the Medical Concierge. They can arrange many, if not all, of these things for you.

    But you need to contact them in advance; I don't recall all the details, but we were unaware of this office until we got there, and then when we asked for help with something (like changing our plane tickets to return home), they said they could only do it if they'd handled arrangements in the first place. Or something annoying like that.

    Anyway, give them a try -- it's worth at least a phone call.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: Cleveland Clinic Travel

      Annette,

      There are some resources available to help. One organization in which I am involved is Angel Flight. Angel Flight is a national organization that relies on pilots of small planes to volunteer their time and airplanes to transport people for medical treatment. These are generally small 4-6 passenger planes, so the trip from Jacksonville-Cleveland would be a five-six hour trip, with a stop and change of pilots and airplanes, but it would be free and would accommodate your schedule.

      Angel Flight divides the country in regions. The contact number for Angel Flight Southeast, is 1-800-352-4256. You can read more about this organization at http://www.angelflightse.org/. If you call, ask for a woman with the unlikely name of Angel. She coordinates what we call "link missions" between regions. I hope it works out for you.

      Bob Singer
      Angel Flight Northeast pilot

      Comment


      • #4
        Re: Cleveland Clinic

        Hi Annette,

        I was just at the Cleveland Clinic in March for a septal myectomy.

        We decided to stay at the Intercontinental Suites Hotel. They have a special rate for patients, so if you are checking around for rates, be sure and ask if the hotel has a rate for patients.

        When we called for our reservations, I was pleasantly surprised that they seemed to have a record of my appointment. They asked for my name and then we just made the reservation without a credit card or anything, and everything was great when we got there.

        It was a nice hotel, nice people, clean and handy. Very pricey in the restaurant, though. The buffet breakfast is eighteen dollars or so. Also, there is an extra charge for parking, daily, which was frustrating. There is a McDonalds nearby, and Burger King, I think.

        There are refrigerators and microwaves in the rooms. We had a rental car and found a Whole Foods about 5 miles away. They have a deli counter where you can go and order things like salads, sandwiches, spaghetti, grilled asparagus (yummy), and they make it right then in front of you. Also they have several food bars like a salad bar, fruit bars, a vegetarian bar, and a hot bar with all kinds of meats (my husband loved the ribs). We ended up doing a lot of our eating there -- lots of variety, good, healthy food, and more reasonable than a restaurant all the time.

        If you're interested in knowing how to find it, PM me and I'll let you know. Also, right in that area was an Applebee's, Walgreens, and a little mall with a Target.

        We did travel a lot around Cleveland, as we were there 3 days before my surgery, and then 2 days after.

        We found the coolest candy store there, named "b a sweetie". They have all kinds of candy that you can't find anymore.

        Other than that, we just rented a car from Heartz, and no specials for us on flights.

        If you have any questions, like I said, feel free to PM me.

        Good luck,

        Debbie

        Oh, by the way, when we were there, the construction around the Clinic and downtown were horrible. You may want to check out the situation to make it easier for you. The Clinic is not in the best neighborhood, so be aware of that and you will be fine.

        Comment


        • #5
          Re: Cleveland Clinic

          Hello Annette
          I will be seeing Dr Lever for the first time as well this Wednesday.

          On the CC web page I found a # to call for hotels in the area. I simply ask for the cheapest and closest. Our room is $119.00 a night and its a 5 minute shuttle ride to where I need to go. I thought the other Hotels were pricey.
          The construction is a nightmare !Ive been there 2 other times to see just regular cariologist and an EP. No one there suggested an HCM Specialist. I found him myself. I thought that was weak on their part.
          Good Luck !!!!
          Maria

          Comment


          • #6
            Re: Cleveland Clinic

            Originally posted by Maria Butcher View Post
            No one there suggested an HCM Specialist. I found him myself. I thought that was weak on their part.

            Maria
            Yeah, no kidding!

            Comment


            • #7
              Re: Cleveland Clinic

              I was less than impressed with the Cleveland Clinic Guesthouse. It's perfectly positioned - just wasn't real impressed with it. We'll go the Intercontinental route next time. I will say, the day was full of one test after another and I had some adverse reactions to a couple of the tests but when I did, people SWARMED around me like flies. I was very impressed with how many people they have on staff there and how they all work like a team. Good luck to you.
              ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
              *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
              *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
              *Gradient 100-185 when provoked.
              *Currently being treated with Atenolol, 50 mg. per day.
              *Three kids: 19, 13 and 11, all presently clear of HCM.
              *Patient of Dr. Sharlene Day, U of M.
              *ICD - August, 2010

              Comment


              • #8
                Re: Cleveland Clinic

                Hello,

                I just saw Dr. Lever on Monday, July 7 for evaluation for a myectomy. I stayed at the Guest house and was quite satisfied! Clean and convienient.

                I ate at the hospital cafeteria and was quite pleased with the price and convenience. They also have a McDonalds (In a heart hospital) !!!

                To get from the airport (if you aren't renting a car) call Bounit Brothers Transportation at 216-789-7076. The ride costs $40 each way, but Mustapha (the owner) provides exception customer service!! Call them if you need a reliable ride!!

                Hope this helps a bit.

                Rick Weinstein
                La Plata, New Mexico
                Rick W.

                Diagnosed with HOCM April of 2006
                Myectomy September 11,2008 Cleveland Clinic
                Dual chamber ICD implanted 12/23/09

                Comment


                • #9
                  Re: Cleveland Clinic

                  We fly to Cleveland tomorrow. I am stoked!!!! It is like winning the lottery, being able to see an expert. I called the hospital three times in order to get my records from the myectomy. No one has bothered to return my calls. (I do have some of the surgeon’s reports though.) I called my current cardiologist to get a copy of the disk I gave him of my latest echo; they lost it. But, of course!

                  C’est la vie! I am starting over from here and am going to put all the pain and suffering of years of misdiagnosis and mistreatment behind me. Even if I get “bad news” at the appointment, I know that I am in good hands now and my treatment options will be based on years of experience and not on….who-knows-what.

                  Since we have to travel so far, we decided to stay a couple extra days and make a mini vacation out of it. We will be back home Saturday (that is if Florida is still on the map [hurricanes]).
                  Annette w/Zapper, Zipper & Ticker
                  Symptomatic 1987, Diagnosed 1999, AICD 2001, 2005
                  Myectomy w/valve replacement 8/2007 (36 y/o)

                  Comment

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