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July 19 Myectomy

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ConnieM Find out more about ConnieM
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  • July 19 Myectomy

    We will be leaving from home on Sunday. I will be having an MRI and Doctors appointments on Monday. Then the myectomy on Tuesday.
    The surgeon will be Dr. Schaff. We have learned a lot from everyone on this site it has helped me prepare for the surgery. Any more advise would be helpful.

    Connie and John

  • #2
    preparing for surgery

    Connie,

    When I had mine, I took a foam mattress pad along. One of those that look like an egg carton with all those things sticking up. It really helped, those hospital beds stink. Make sure you have slippers for walking. Something easy to get on and off. Have some pj bottoms or lounge pants also for those walks and you will be doing lots of walking after surgery. Take your own pillows from home, they will make a difference. I also bought a phone card from Wal-mart for long distance calls, I don't have a good cell phone plan.

    I hope these little things help. You will be in my prayers. Keep a PMA, positive mental attitude.


    Tigger1

    " Real courage is being scared to death, but saddling-up anyway "
    " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

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    • #3
      Connie,

      I agree with tigger about the phone card. Trying to make calls without one was a pain in the ... You can't use cell phones in the ICU or step down units. I took way too many clothes on my trip. A couple pair of PJ bottoms or sweats are great and some comfy tops (Tshirts for me) You can't wear much other than the hospital gowns until you can rid yourself of some of the wires / tubes.

      Make sure you pack your smile and winning attitude. That will definately help. Also, some candy or chocolates for the nurses seems to make them stop by more often You are going to be in the best hands. Everyone at Mayo is so awesome. You will love the nursing staff. Tell everyone there that that the myectomy alumni say hello and thanks!

      We will all be praying. Will John be keeping us up to date on the message board?

      Take care,

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

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      • #4
        I can only agree with the others.

        They do keep soft drinks, juice, etc in the refrigerator. All you'll have to do is ask.

        Please remember to walk, drink...walk, drink and rest when your body tells you to. Don't hesitate to ask for pain medication when needed. Your doctor will inform the nurses of what type to give you and how often. They don't usually give pain medication unless you ask.

        You are certainly in good hands at Mayo/St. Mary's.

        Take care and please try and keep us informed as to your progress.
        Esther

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        • #5
          Connie,

          I'm sending good thoughts your way for your surgery. Hope all goes terrifically and that you are up and running soon!

          Debbie

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          • #6
            Connie,
            I can't send you any myectomy advice, but I am sending you best wishes and prayers.
            Joyce
            \"We are not human beings having a spiritual experience. We are spiritual beings having a human experience.\"
            Pierre Teilhard de Chardin

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            • #7
              Hi Connie

              As I mentioned in the other thread, open back slippers are easier to walk in and to put on.

              -- This is embarrassing but I'm going to say it anyway.......

              What helped me when I got back to the hotel after surgery were Depends undergarments. I bought them before surgery when I was in Cleveland at Rite-Aid. During surgery, I gained 14 pounds of water weight. I lost most of the water weight during the 6 days I was in the hospital due to lasix and walking. (All of the 14 lbs of water weight was gone about 10 days after surgery.)

              However, when I got back to the hotel, I walked real slow and sometimes, especially during the night, I could not always make it to the bathroom in time, so the Depends helped.

              I drank A LOT of water after surgery (and still do).

              -- Now that that is said, here is something gross to add......

              I needed alot of tissues to cough up the effects of the anesthesia and please hold a pillow against your chest while coughing. (Sorry very gross, but very necessary.)

              Also, I brought some over size t-shirts and work-out pants to wear after surgery, they were easier to put on than tighter shirts and jeans.

              I am thinking about you Connie and I'll be praying for you.

              Please keep us updated when you can.

              I wish you the best. You will be in great hands at the Mayo Clinic.

              Hugs,
              Eve
              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.

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              • #8
                connie, guess we're in this together, too bad you're not at cleveland, we could meet. good to see they won't need to do mitral repair, correct? hope this means it will go straight forward for you.

                best of luck, laura
                Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

                Comment


                • #9
                  HI Connie and John! Well it sounds like everyone has given you great advice and tips... I couldn't agree with them anymore. Walk, drink and rest as much as you can wihout overdoing it.

                  Also try to stay calm when you wake up in CCU, I know it sounds weird but the more relaxed you are about the ventilator, the easier it will be and the sooner they will take it out.

                  I wish you all the luck in the world and will be keeping you in my thoughts and prayers. Please keep us posted on how you are doing when you feel up to it.

                  Regards,
                  Vinnie

                  Comment


                  • #10
                    Connie ,

                    I agree you have gotten excellent advise. Just want to say , good luck, 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


                    • #11
                      Hi Connie,

                      I just thought of one more thing. At Mayo they have a great library of books and movies. Just ask the nurses in step down and they will give you a catalog to look at. Let them know what you want, and someone will deliver it right to your room. There is a VCR with the TV. It will really help pass the time. I didn't find out until my last day there and I had already really worn out the channel changer.

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

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                      • #12
                        Does anyone know about the rules for visitors at St. Mary's reguarding children?
                        Connie

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                        • #13
                          Connie,

                          May your recovery be an easy one.
                          Remember to push yourself to walk.

                          Stuart
                          Cleveland Myectomy Club
                          August 31, 2004

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                          • #14
                            Thinking of YOu

                            Good luck Connie! You will be in my thoughts and prayers! Janet
                            My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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                            • #15
                              Connie, Wishing you the best, sending prayers your way! We'll be waiting for updates. Linda

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