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Tomorrow -- Cleveland

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Eileen2345 Find out more about Eileen2345
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  • #1

    Tomorrow -- Cleveland

    Hi Everyone,

    I'm packing my bags for Cleveland tomorrow. My flight leaves Phoenix at 11:30am and arrives in Cleveland at 6:00pm.

    I see Dr. Lever on April 27. The myectomy is scheduled for May 4.

    What I am most nervous about is the results of the heart cath because I know there is no way of fixing how stiff my heart is and I don't think that all of these symptoms I have is just from obstruction. I don't know, I'll have to see what Dr. Lever says. Finally, I get to see someone who knows HCM.
    I have curbside wheelchair assistance. And I have oxygen for the plane. It is set at 4 liters!
    I think that might be too high, the most I use at home is 3.5 if I am really tired and have that sick feeling.

    The people at Med-Link said that with the cabin pressure in the plane, it is equivalent to 8,000 to 10,000 feet elevation. That air is pretty thin for me.

    Thank you everyone for all of your support, it has meant the world to me. I do not know how I would have gotten though so far without you
    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.
    Tags: None
  • #2
    Dear Eve,

    I hope that you are feeling better from the bug you caught from your kids.

    I also hope that your trip to Cleveland proves to be the ticket to getting your life back on track. I hope that once the myectomy is behind you, it will be the first step to creating a whole new you!

    Best of luck, and make sure that you and your mom keep us all posted as to your progress. You are definitely making the right move and are now on your way....

    We will keep you in our thoughts and prayers...

    Best wishes,

    Cynthia, Jesse and Vince in L.A.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

    Comment

    • #3
      Dear Eve--

      I'm so glad you can finally GO. I'll be thinking of you and sending you caring thoughts every day. I'm so glad that your mom is going with you, and that she'll be in touch with us too. I hope the week in Cleveland helps you relax from all of the home issues and caregiving you've been doing, and focus on yourself and your health. I'm just wishing you the very very best--hugs, Lisa Inman

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      • #4
        Eve

        Thanks for the update and please keep in touch with us to let us know how you are doing and don't forget to have a little fun before the myectomy

        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

        • #5
          My prayers are for you on this Sunday morning. I wish you good luck on your adventure to the Cleveland Clinic. You must keep that PMA (positive mental attitude) and I would stay with ACDC on your mind, they helped me get throught Cleveland when I was there last year. Don't forget the cheesecake at the Chicago Deli. That will get you through anything.

          Keep us posted...


          Tigger1
          " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

          Comment

          • #6
            Best Wishes!

            Eve,

            I'm excited for you and your big trip to Cleveland. You will be in great hands there. Best wishes for a speedy recovery. We will all be praying for you. - As you say "HUGS" and lots of them!

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

            Comment

            • #7
              Eve,

              I bet you'll be awed by the support and assistance you get in Cleveland. I'll be sending best wishes from Yuma. DO take time to enjoy the spring flowers while you're there. I just came back from Pittsburgh and the daffodils and trees had just started to bloom--for me they always refocus my energy on what is good in life and the positive outcomes which follow steps like the one you're taking.

              Pat

              Comment

              • #8
                Hi everyone!

                OMG, I made it to Cleveland !
                But the plane ride was very tough on me. I needed to recover all day from it.

                I am at the hotel room using web-tv and I am not very good at it.

                I am so grateful for the CCF and the Doctors and the staff. They are so kind to help me.
                This campus is huge!!!

                Everyone that my mom and I have met have been very nice.

                My 6 year old son and my 9 year old daughter are having a hard time with my being gone. They cried their eyes out when I left and they cry everytime I talk to them on the phone. Even my toy poodle was walking around the house looking for me.

                But, I am grateful for the help and the care that I am going to recieve at CCF.

                When we can, my mom or I will let everyone here know what they say and how things are going.

                The plane ride here took everything out of me. Hopefully after the surgery, I wil feel well enough to fly home.

                Thank you again for all your support.

                Hugs to All,
                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.

                Comment

                • #9
                  Hang in there Eve, everything will work out just fine. Everything your are going thru now will be well worth it in the end...


                  Tigger1
                  " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                  Comment

                  • #10
                    Eve ,

                    I am late in wishing you well. I know everything will go well for you out there. You are in my daily thoughts and prayers. Will be watching for updates as you progress. I am glad your mom is with you.

                    I had to chuckle when you told of your toy poodle. When I had my myectomy my little Lhasa Apso did the same. The kids said she barely ate while I was away. When I came home , she could not stop greeting me and had to be held back. She went right to the bowl of food after that and stuffed her little piggy belly full!! She still looks for me if I leave for any length of time. I am sure your kids and the poodle are the same in that respect . They will all be so happy to see you. Now that IS validation isn't it???

                    My best to you EVE, positive thoughts , all will go well, you deserve it.

                    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
                      Eve,

                      I remember how wiped out I felt the day I flew into Cleveland for my Myectomy.
                      And yes, you do a lot of walking from appointment to appointment.

                      I had the same concerns about the flying home part. I think you’ll be pleasantly surprised.

                      You are in great hands there.

                      Wishing you the best…
                      Stuart
                      Cleveland Myectomy Club
                      August 31, 2004

                      Comment

                      • #12
                        Ok has anyone heard from Eve today, I sure hope she is ok

                        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

                        • #13
                          I know she had seen Dr. Lever and that she has a plan. Beyond that I do not know anything. When I hear something I will let you know.

                          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)

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