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At the Cleveland Clinic

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HCMfamily I'm a southern girl, a pastor's wife, a mom, and a freelance writer. My father-in-law and husband have both been diagnosed with HCM and we are awaiting tests on my children. Find out more about HCMfamily
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  • At the Cleveland Clinic

    After my husband's doctor stressed the importance of getting in with Dr. Lever ASAP, we called his office. With the symptoms he has, they got him in within 4 days - unbelievable!

    So we are sitting in the Cleveland Clinic now, hopeful that we will get some answers and help for my husband! So far, this place has been extraordinary!

  • #2
    Re: At the Cleveland Clinic

    Dear HCM Family:

    You sound like where I was a year ago and what a whirlwind it has been since then.

    Yes you are in great hands with Dr. Lever, yes you are in great hands at CCF, and yes it is pretty unbelievable there. Make sure you see the projected artwork of the 4 seasons of a tree on the 1st floor of the Sydell and Arnold Miller Family Heart and Vascular Institute - it too will add a little more unbelievable to your trip and if like me give you a few moments of peace during an otherwise hectic and nervious time.

    Best of luck to you and your family.

    Toodle pip... Moosedreams
    Diagnosed HCM Nov 2009
    100 mg Atenolol; Baby asprin
    First Trip to CCF June 2010
    HCM Specialist at CCF... Dr. Harry Lever
    Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
    AICD w/pacer at CCF... December 20th 2010

    Once you choose hope, anything's possible. ~ Christopher Reeve

    Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125

    www.TheRhubarbChronicles.com

    Comment


    • #3
      Re: At the Cleveland Clinic

      I'm glad you're there -- and I'm not surprised they worked you in quickly! Looking forward to hearing the report.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: At the Cleveland Clinic

        You have now experienced what a COE and World Class facility/program has to offer. Do keep us posted.
        Linda
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

        Comment


        • #5
          Re: At the Cleveland Clinic

          I am heading to Cleveland Clinic, this Wednesday, May 11th with Dr. Lever. I am really nervous, because surgery (Myectomy) is now being discussed, but even more so because I'm afraid they may not be able to do anything to help me. This has been a very long, difficult process.
          Cherie
          Diagnosed with HOCM - Fall 2010 @ 48 yrs old
          Also Asthmatic (Allergic Asthma)
          Current treatment: Meds: Verapamil 240mg x 2 day

          Comment


          • #6
            Re: At the Cleveland Clinic

            thanks everyone! He saw Dr. Lever briefly and he basically just listened to his pulse in various places and looked in his eyes. He had an EKG, xray, blood work (for geneticist), and now we're waiting on echo and stress echo. Then we will see Dr. Lever again.

            I'm eager to know what he thinks. He said very little when we saw him earlier. He seems very sharp, but quiet. I know he is the best and I'm so glad he was able to see Josh (my husband) today!

            Comment


            • #7
              Re: At the Cleveland Clinic

              Cherie, I know how you feel. My husband's primary doc mentioned getting a defib immediately and possibly a myectomy or ablation this week. But the PA we met with told us that he is very conservative about surgery and rarely does surgery the same week unless it is a real emergency kind of situation. We have mixed feelings - hope no surgery is needed, but after making the trip all the way from NC, if he needs it we would rather get it over with while we have things lined up at home instead of going through all of this again.

              You will like it here. They are very nice!

              Comment


              • #8
                Re: At the Cleveland Clinic

                Thanks...Maybe I will see you there. I hope all goes well for you... Good luck to you and send my best to your husband, Josh!
                Diagnosed with HOCM - Fall 2010 @ 48 yrs old
                Also Asthmatic (Allergic Asthma)
                Current treatment: Meds: Verapamil 240mg x 2 day

                Comment


                • #9
                  Re: At the Cleveland Clinic

                  Well, it turns out my husband has "moderately severe" and quite "significant" HOCM. I haven't seen full reports yet but Dr. Lever put him on 100 mg Toprol starting immediately. He is wearing a holter for the next 2 days while we are here near the CC and also doing MRI tomorrow to look for scar tissue. We are hoping the Toprol will make a big difference in how he feels so we can avoid surgery.

                  When he was taking just 25 mg of the beta blocker it made him pretty tired and "foggy" feeling. I'm hoping the new dosage won't be too hard on him. We follow up by phone in a couple weeks (assuming holter and MRI look okay for us to go home at the end of this week). He said if no better, they would double the meds again, then if no better - myectomy.

                  Hoping and praying this medicine does the trick!

                  Comment


                  • #10
                    Re: At the Cleveland Clinic

                    I'm glad you have some answers and a plan. Some people take a few weeks to adjust to beta blockers; let's hope it's not too hard on your husband.

                    Gordon
                    Myectomy on Feb. 5, 2007.

                    Comment


                    • #11
                      Re: At the Cleveland Clinic

                      hes been my dr. for the last 11years hes the best and will set you stright on any problems that might occur they will help you trust me!!! good luck to you

                      Comment


                      • #12
                        Re: At the Cleveland Clinic

                        has anyone had strange side effects on the toprol xl? my husband isn't tolerating it well. they had to up his dose to 150 mg already and still not doing well.

                        Comment


                        • #13
                          Re: At the Cleveland Clinic

                          Report any "strange side effects" to the ordering MD and let them know that he isn't doing well. You will need to be specific with them.
                          Linda
                          Onward and Upward !

                          Diagnosed 4/07 HCM with fixed & dynamic obstruction
                          Myectomy with resected cordonae tendonae 4/08 CCF
                          ICD 10/08

                          Comment


                          • #14
                            Re: At the Cleveland Clinic

                            There is a web site where patients can enter their side effects.
                            Everybody can have a different response; I've been on Toprol XL for a couple years and didn't have any real side effects until I hit 200 mg/day,
                            then it simply made me feel sluggish.

                            However, everyone can be different; check out the site and see if the symptoms you see match those reported by others.

                            http://www.askapatient.com/viewratin...name=TOPROL-XL

                            Frank S.
                            Father had "IHSS"
                            "Exercise induced asthma" since age 40
                            Diagnosed with HCM age 44 (2004)
                            Myectomy and L Ant Artery unbridging Stanford Dr. Mallidi 3/17/2011

                            Comment


                            • #15
                              Re: At the Cleveland Clinic

                              Thanks. He's going to call Dr. L. back tomorrow. He did really great for about 2 days, then he started having a little dizziness and palpitations again. He called and Dr. L upped him to 150 mg. Again, first day was good. Then it went down hill from there. He had a spell on Wednesday night where his heart was just thudding so hard, his chest was visibly moving. He said it is like discomfort and major pressure. He can't draw a good full breath when it's like that. It scares him (and me!). He gets dizzy standing sometimes and we started checking his blood pressure to see if it was going too low, but it was still holding at around 125/85 or a little higher.

                              He doesn't seem to be having arrhythmias and his pulse is overall much slower on the toprol. It's just that pounding thing, like his heart is just going to come out of his chest. Is that common with HOCM? We just didn't know what to think.

                              Comment

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