If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Cleveland bound

Collapse

About the Author

Collapse

Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Cleveland bound

    Good evening everyone.

    Today I secured an appointment with Dr. Lever at Cleveland. Since my diagnosis in 1990, I have never been evaluated by a cardiologist who specializes in HCM. After getting three different measurements of my heart in the last three years, I decided it might be about time to get an expert on HCM to have a look see and tell me in a more definitive way what is going on. My cardiologist is a great guy and generally I have been satisfied with him. And even if Dr. Lever says we are doing everything just right, it will be nice to know for sure. So on December 20 (the first day of my Christmas vacation) I will be in Cleveland going through the workup. I should be getting the paperwork in the mail soon.

    For those of you who have been to Cleveland I am open for advice on where to eat, what hotel to stay in, and any other fun facts you can fill me in on.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

  • #2
    Re: Cleveland bound

    Leon,

    Sorry I can't tell you where to stay while you're in Cleveland...I live in Ohio, and always drove back and forth. However, I can tell you that you absolutely HAVE TO stop at the coffee shop/bakery that is actually in the clinic. They have awesome baked goods!

    Rene'

    Comment


    • #3
      Re: Cleveland bound

      Hi Leon,

      I'm glad to hear that you are going to be evaluated by a specialist. It sounds like you have a great local cardio, but i also agree that getting a thorough workup by an HCM specialist like Dr. Lever is a good move. You'll walk away with the most accurate measurements you've probably had to date, and treatment advice from someone who sees HCM on a daily basis.

      I stayed at the Cleveland Clinic Guesthouse at the recommendation of several other people here, and i found it to be the most economical and convenient. It runs about 100 bucks a night, it's just a block from the heart center, and saves you some bucks by not having to pay for parking at the hospital. There's also a complimentary shuttle that comes around every 10 or 15 minutes that'll take you to any of the Cleveland Clinic facilities. It's a large campus, so the shuttle is a real bonus.

      There are of course cheaper places to stay much farther out from the clinic, but all things considered i've always found the Guesthouse to be the most inexpensive, convenient and hassle-free. The traffic factor alone was worth it for me... i parked the car when i got there, and didn't have to drive it again until i left. You'll get info in your packet concerning reservations and such should you decide to stay there.

      And of course, don't forget to sample the cheesecake at the Chicago Deli downstairs

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

      Comment


      • #4
        Re: Cleveland bound

        Good luck!

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Cleveland bound

          Largehearted

          It makes allthe difference in the world, i could not say anything but good about my experiece but i went to Minneapolis clinic and see Dr. Barry Maron.... and i'm sure Cleveland is great too, you will feel better after you leave GOOD LUCK

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment


          • #6
            Re: Cleveland bound

            Leon, Good Luck, hope you get all the answers your looking for.
            Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
            So if you are capable of thought then you are capable of great things
            Good luck and stay well.
            Glen

            Comment


            • #7
              Re: Cleveland bound

              Largehearted,

              I wish you the best of luck. And I hope you get the very best of care.

              -- Eileen
              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.

              Comment


              • #8
                Re: Cleveland bound

                Hey Leon,
                As G-d said to Moses, “Listen Moe, with the tribe you got it will take forever to go to the East. Better you should go to the Near East – and even then I bet it will take you forty years to get there.”

                From Lancaster, PA to Cleveland, Ohio is North West, but it is still in the East, and as seen from Las Vegas, it looks pretty Near for you, but I would still suggest not walking it. Spend a little manna and go by car or plane.

                I hope you get to hear what you want to hear, and have a festive holiday season. Just go easy on the egg nog, - nog, - nog, - nog. (Will shomebody kindly pick me up and shtick me in a chair? Shank you verrrry much.)
                Burt

                Comment


                • #9
                  Re: Cleveland bound

                  Burton,

                  I'm becoming a bit concerned about these meds you're taking. God said... "Listen Moe"? Have you been watching the Three Stooges while reading the Old Testament again? I thought we had a talk about that.

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

                  Comment


                  • #10
                    Re: Cleveland bound

                    Thanks everyone for your well wishes and the advice on where to stay etc.

                    Burt, they tell me that al-che-hol will make my ticker go bonkers, but Southern Comfort Egg Nog is pretty good even without the mixer. I'll keep you all posted as to what they find.

                    Peace,

                    Leon
                    God Squad co-moderator
                    Nothing is as gentle as strength and nothing is as strong as gentleness

                    Comment


                    • #11
                      Re: Cleveland bound

                      Leon, Best wishes, we'll be waiting to hear. Linda

                      Comment

                      Today's Birthdays

                      Collapse

                      Working...
                      X