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Ralph I love my family. We have between us 4 great children and they have 9 great children. My passion is flyfishing. I am lucky to live within 5 miles of a great trout river, the Chattahoocee in Georgia. Find out more about Ralph
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  • Off to Cleveland

    Well I'm off to the Cleveland Clinic tomorrow for an all day set of tests and appointment with Dr. Lever. I am looking forward to my visit with great anticipation and hope. I have HOCM with symptoms that have gotten worse over the past 3 to 4 years and am looking for a better quality of life.

    Those of you who have had myectomys, how do you feel your quality of life improved or did not improve after the surgery?

    Ralph

  • #2
    Re: Off to Cleveland

    Ralph, good luck. Don't be afraid to ask Dr. Lever any question you have. If you are taking the metabolic stress echo, it's a killer. Let us know how you make out.

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    • #3
      Re: Off to Cleveland

      My tests and appointments start tomorrow 03/10 at 8:25 AM. Yes I am having a meabolic stress test and I'll let you know how I do.

      The only problem with taking the stress test is I won't be able to drink any Starbucks Decaf coffee for 24 hours prior to the test.

      Ralph

      Comment


      • #4
        Re: Off to Cleveland

        I hope all goes well for your day at CCF tomorrow, Dr. Lever and the entire staff there are tremendous. As for the metabolic stress...just keep a good sense of humor!

        Best wishes,
        Lynn
        Lynn Stewart
        HOCM 4/2002
        Cleveland Myectomy Crew 8/2002

        Comment


        • #5
          Re: Off to Cleveland

          Hi Ralph , Best wishes on all your tests from what I have read you are at a great place and will get all the best care. I know you have asked about what those who have had myectomys can report as improvements. I think once surgery is past and the recovery road smooths out from all the bumps, mostly small for most of us and for some of us not so small, you will realize many improvements. There is a vast improvement in simple ability to complete a task without stopping to huff and puff through it. There is still shortness of breath but I feel personally for me much less and a different kind of SOB. There is not that pounding and pain behind my breastbone like a locomotive about to be delivered from inside my heart and consequently the SOB resolves more quickly . I do not have head swirling like I did and feel like I soon will be face down in the dirt. I think the true test for me is as soon as the weather permits if I can garden again . I had to leave that behind several years ago as all of the previous mentioned symptoms stopped me cold. I don't feel like someone unseen has a death grip around my neck getting tighter as I attemt to do the littlest of tasks. My bright red face is gone mostly and just presents when I talk too much and too long. I can feel my toes and feet . I get rid of fluid easier. I feel the elements better and appropriate to other peoples sensations. I can stay with aconversation instead of thinking "I hope they are finished cause I am." I don't drip with sweat pouring off my head just walking up the stairs. I don't have to ask my son to pretend we lost something so we can walk real slow when we go out in public. I still can't walk briskly for a distance but it has improved. I know there are many more improvements that I could write and more to come so overall I believe you will be very satisfied. We have to remember it is not a cure but it can level the playing field a bit . These improvements to a normal person may not count, but to us HCMers they can mean the difference between feeling hopeless and having hope. I'm sure others will report to you as well . Best wishes and I will be watching for your updates. Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Re: Off to Cleveland

            Ralph-
            I am 7 Months post Myectomy & Glad I had the courage to do it! My quality of Life has definitely improved! I'm returning to Mayo, tomorrow, due to some other Cardiac issues (which are at this time, unidentified), but I see so much improvement, due to the Myectomy. Ask the Drs every single question & have them address all your fears. Then just make an educated decision.
            I'll be praying for strength for you
            RONNIE
            RONNIE

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            • #7
              Re: Off to Cleveland

              Pam and Ronnie,

              Thank you very much for your responces. It's wonderful that both of you are doing well and feel better with the ability to do more "normal" things in life.

              My visit to the Cleveland Clinic and Dr. Lever and the entire staff was great! Dr. Lever wants me back in next week for a double by pass and a myectomy. I did go to Johns Hopkins for a consult with the head surgeon last week and feel he is a wonderful skilled surgeon. But the fact that he only did 2 myectomys within the past year and CCF did 99 had a bit to do in my decision where I go.

              I will be calling Dr. Lever this morning to schedule the surgery as well as getting everything ironed out with CareFirst my local BC/BS.

              My wife and I are looking forward to the trip to Cleveland and especially the results. I am always thinking of ALL of you here on this board and my prayers go out to you and for you.

              I must add that Lisa, with all her tireless efforts has done a fantastic job with this website and I know she has saved a number of lives and made many peoples lives better because of the knowlege we recieve here.

              Ralph King

              Comment


              • #8
                Re: Off to Cleveland

                Ralph, glad all went well in Cleveland. I think you are making the right choice going to Cleveland where the experience level is much higher. Good luck with you bypass AND myectomy. You will be keeping them busy. I'm sure your quality of life will be some much better and you will be able to do the things you only wish you could do now. Keep us posted, Steve.

                Comment


                • #9
                  Re: Off to Cleveland

                  Ralph good luck next week. I just wanted to offer you a couple of points to remember after your surgery. As if you don't have enough on your mind already! When you awaken and are extubated and cognitive remember to always know where your call light is, I was so distraught at one time that Dr. Maron came in ,I had him place it right in my hand. It is easy to lose track of it in the beginning when there are lots of tubes and wires around. Be cognizant of the time they give you your pain med and stay on top of it. The staff is great but falling off the pain med regime by 15- 30 minutes in the very beginning is easy to do and then it can be difficult to get back on top of it. As you progress you will see your progress as you are able to go a little longer each time. This is different for each individual. We all have different pain threshholds. Use that folded bath blanket they give you to brace your chest when you take your deep breaths or cough . Cough as much as possible to aid the clearing and take deep breaths as much as possible. Use your inspirometer as they direct at least 10 breaths an hour more if you can. Sneezing is painfull , there is a nerve that runs across your upper lip and if you squeeze your upper lip tight you may catch most of the sneezes before they happen. I learned this in A&P many years ago and it does work. Check your weight before you leave home and then try and remember it when they weigh you at the hospital the morning of your surgery. This will give you some involvement in knowing how much fluid you have on post surgery. When you get home weigh yourself,the number you got at home the morning of your surgery will give you a rough idea of where you are, given there will be some dry weight changes due to weight loss . These are a few things that were very helpfull to me and helped my brother in law as he followed me by 12 weeks. Best wishes. Pam
                  Dx @ 47 with HOCM & HF:11/00
                  Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                  Lead failure,replaced 12/06.
                  SF lead recall:07,extracted leads and new device 2012
                  [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                  Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                  Genetic mutation 4/09, mother(d), brother, son, gene+
                  Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                  Comment


                  • #10
                    Re: Off to Cleveland

                    Pam,
                    Thanks for all the advice. My surgery is scheduled for next Thursday the 18th! Katy and I are flying up to Cleveland Wednesday early am the 17th and start with pre-op at 10:00 at CCF. I am very calm and confident about the surgery and pray the results are good. I believe I am in good hands and have chosen the right place to have my surgery. I don't like having to travel to do this, but it's a good decision I'm sure.

                    I will get back on here as soon as I can to report how I'm doing so I can maybe help someone that may be going towards surgery too.

                    Ralph

                    Comment


                    • #11
                      Re: Off to Cleveland

                      Ralph,
                      I'll be Praying for You. You've made the right decision, to have the Surgery! You've received some great suggestions from everyone. Someone told me that after his Bipass, while still intubated, the Nurses would rub a moist Q Tip over his lips & the feeling was uncomfortable-I told them (in advance) not to do this-I gave my Husband a Chap stick to apply to my lips (I was extubated 24 hours after my Myectomy) It's important to be aware of the times you get the pain meds, to stay "on top" of the pain. I would write down the times on paper. I was glad I took PJ bottoms, for the times I kicked off blankets & walked around. When they tell you to get out of Bed & start walking - push yourself to do it. Your ability to concentrate will be nonexistant at first-don't worry it comes back, as will your memory.
                      Good Luck think Positive
                      RONNIE
                      RONNIE

                      Comment


                      • #12
                        Re: Off to Cleveland

                        Ralph,

                        Good luck on thursday! I've heard nothing but great things about the doctors at Cleveland Clinic, and you are in very good hands there. We'll be thinking about you here.

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

                        Comment


                        • #13
                          Re: Off to Cleveland

                          Ralph


                          Good luck this week bud i will keep you in my prayers

                          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

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                          • #14
                            Re: Off to Cleveland

                            My grateful thanks to all for your prayers and kind thoughts. I believe strongly in the power of prayer and thank you all for them.

                            Ralph

                            Comment


                            • #15
                              Re: Off to Cleveland

                              I am just waiting to hear the good news Ralph! You have been on my mind and I am pulling for you! Rick
                              \"A Misty Morning Does Not Signify A Cloudy Day\'

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