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  • Add me to the list

    Hi All,

    Well my visit to Mayo went well and I got all of the answers (or 2nd and 3rd opinions) that I was looking for. Dr Ommen and his staff were great. I really liked how organized everything was although all the testing made for some long days.
    I have made the decision to go forward with the myectomy surgery. Wow, I can't believe that I am opting to have open heart surgery. EEEK I know it will be the best thing in the long run though. I kind of feel like I am in a bit of a daze right now. How does one prepare for surgery? I will be working out dates this week but it will likely be the 2nd week in June.

    Thanks everyone for all of your support. Any helpful hints before surgery would be great. I will let everyone know when I have an exact date.

    John
    41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

  • #2
    Re: Add me to the list

    Originally posted by jmurray
    Hi All,

    Well my visit to Mayo went well and I got all of the answers (or 2nd and 3rd opinions) that I was looking for. Dr Ommen and his staff were great. I really liked how organized everything was although all the testing made for some long days.
    I have made the decision to go forward with the myectomy surgery. Wow, I can't believe that I am opting to have open heart surgery. EEEK I know it will be the best thing in the long run though. I kind of feel like I am in a bit of a daze right now. How does one prepare for surgery? I will be working out dates this week but it will likely be the 2nd week in June.

    Thanks everyone for all of your support. Any helpful hints before surgery would be great. I will let everyone know when I have an exact date.

    John

    Hi John , welcome to the Club.. , I am scheduled for june 14th in cleveland, I am sure you are going through the same feelings as i have been for the last month or so, BUt i know its the right thing to do. I have talked with alot of the folks here who have went through it and that was a big help in preparing. I will post all the details of mine as I move on through it.

    Let me know if you want to compare notes...

    Vinnie

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    • #3
      I'm glad you had a successful time in Mn. It's a big step, deciding to have open heart surgery, but I'm sure it's the right one. We'll be here with you as you get closer and afterward too. Let us know when you have dates set up.

      Reenie
      Reenie

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

      Comment


      • #4
        Hang in there guys - there is a great amount of information and support here. I would suggest that you both get into the best shape you can BEFORE the procedure as it will help you during your recovery. Take your vitamins, eat well and walk as much as you can - that will help the the physical. Get your support team in place, talk to your friends and family, get a plan with your employers and find some peace with the process ahead of you - that will help you get the emotional part in line.

        We are here for you and we are happy to give info, listen to you vent or tell you some bad jokes to get your mind off of it! What every you need...

        Be well,
        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)

        Comment


        • #5
          John,

          I'm so glad you felt you had a good trip and evaluation. Boy, are we ever on the same path together. We now have our subset group: people having myectomies the week of June 14-22: John, Vinnie, and Lisa (me). John, I'll be at the Mayo also, my pre-op appts. are June 20-21 and surgery is on June 22, so it sounds like we will overlap, depending on your exact dates. We can all do this just great--but it is taking a lot of trial runs in my mind getting used to it all. Know just how you feel : ... (is that about right?)

          Lisa Inman

          Comment


          • #6
            Well I just got exact dates today. Pre op appointment is on Monday June 6th, and the surgery will take place on Tuesday June 7th. It's all scheduled and I actually feel like I am starting to relax a bit.
            I am definitely taking Lisa's advice on getting ready for surgery. Lots of good healthy food, tons of positive thinking and self talk, and what little exercise I can do right now.

            After surgery goal = Taking a nice bike ride or long walk around my beautiful neighborhood on a great summer evening without feeling like I am going to die! YEAH! "Ahhh...the simple things in life"

            John
            41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

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            • #7
              Sounds like you have a great plan and I know my thoughts will be with you on June 7th... I will be recoveing from the meeting and golf outing... and you'll be in the OR!

              Keep up the great attitude!!

              BIG HUGS!
              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)

              Comment


              • #8
                Wishing all well and good luck

                Hey Good Luck to you all whether you be going to Mayo or CCF. They are both great places. Keep everyone posted on your progress. Our prayers are with all of you...


                I Pray God's healing hand be with each of you and that he will guide each sugeon as they do your surgeries and I pray each of you will have an angel looking out for you each and every day as you recover.....


                God Bless you and yours



                Christy Dalton

                PS Don't foget to ask Lisa S. any questions as she has really got it going on. She knows the right thing to tell you and she means it from the bottom of her heart. SHE IS GREAT.....
                I pray that God will place his loving arms around you and hold you in the comfort of his love.

                Comment


                • #9
                  John,

                  I also wish you good luck for your upcoming myectomy. Sounds like you are prepared and have been given good advice.

                  Keep us posted when you can. We are here to give you advice and support after the surgery - you may or may not need it, though I did!

                  God's speed,

                  Paul
                  Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                  Comment


                  • #10
                    Thank you all so very very much for all of your kind words, encouragement, advice and support. This last year has been a bit of a whirl wind, and I would not be where I am today without the HCMA.

                    I am off to Rochester on Monday and will have my surgery on Wednesday. I plan to travel back to Denver on the 15th. I will give everyone an update when I can.

                    Again, thanks to everyone - you all mean a lot to me!

                    Cheers!

                    John
                    41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

                    Comment


                    • #11
                      John,

                      The best of luck to you. You are in great hands and have a wonderful attitude. You will do very well.

                      Please keep us posted on how you are doing.

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

                      Comment


                      • #12
                        John,

                        Good luck with your surgery , I am sure all will go well. Let us hear from you as soon as you are able .

                        Thoughts and prayers,

                        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


                        • #13
                          Hi everyone I'm Gary and I'm John's partner. I will keep you all updated on his progress.

                          Comment


                          • #14
                            Gary, Welcome, we'll be waiting for the updates. Best wishes to all. I remember the challenges of the waiting room. Mayo has a very good system of keeping loved ones updated thru-out the procedure. Linda

                            Comment


                            • #15
                              Gary,

                              That's great! We'll be looking forward to knowing how you are doing. And nice to meet you.... You both have my good wishes for a smooth trip, great surgery, and super recovery, I'll be thinking of you each day this week.

                              Lisa Inman

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