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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • Going to Minn

    Well everyone wish me luck, hope Dr. Maron can help me or at least get things rolling for a transplant maybe for me, I guess he would make an exacellant second opinion for that huh

    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

  • #2
    Re: Going to Minn

    Good luck, Shirley!!

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Going to Minn

      Shirley, when do you go? Wishing you the best, Linda

      Comment


      • #4
        Re: Going to Minn

        Linda

        I will be sitting in his office Tuesday morning at 8AM, just went and did some shopping and now i'm exhausted

        Shirley

        P.S I have finally worked up to 20 minutes on my exercise bike it has only taken months
        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
          Re: Going to Minn

          OK Shirley,
          So now that you’ve worked up to twenty minutes on your bike – when do you start pedaling?

          Listen, you take it real easy going to the airport Monday, and leaving the airport too. If you are anything like me you will feel the reduced cabin pressure, so if you’re the least bit uncomfortable, start sucking on that oxygen – after all you paid for it, whether or not you use any is strictly up to you.

          The trip might not seem like much at the time, but it will suck what little energy you have right out of you. Baby yourself the whole trip. If you think you can do something, but are not entirely sure it won’t affect you, let Ken do it for you. When you get all fixed up and are operational again you can make it up to him. Actually, if I know Ken, he will probably be more then happy to help you – it will make him feel good to do so.

          Don’t forget to update us when you get the chance.
          Burt

          Comment


          • #6
            Re: Going to Minn

            Shirley,

            I will be thinking of you and hope that Dr. Maron gets a good plan for you. I am sure he will. You are on you way to some solid answers. Take it slow and use one of those carts at the airport.

            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

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            • #7
              Re: Going to Minn

              Shirley

              Wishing you the best

              Stuart & Barbara
              Cleveland Myectomy Club
              August 31, 2004

              Comment


              • #8
                Re: Going to Minn

                Hi Shirley
                Wishing you all the best. You are certainly in good hands. The Mayo Clinic & St. Mary's Hospital are great! When I first moved to MN I was directed to the Mayo Clinic and I have the upmost faith in their doctors.

                It is a little chilly here in MN. All week it has been windy and cloudy. The temps have been in the mid 50's to low 60's. I hope this weather report helps you and your hubby to decide what to pack.

                If you should want my phone number, please send me a pm. I will be glad to give it to you.

                Take care and may God bless.
                Esther

                Comment


                • #9
                  Re: Going to Minn

                  May God bless you, Shirley, and give Dr. Maron great wisdom!

                  Rhoda

                  Comment


                  • #10
                    Re: Going to Minn

                    HI, it’s me again,
                    If Ken hasn’t already done so, on Sunday have him call the airline and order a wheelchair for you for both airports, and both coming and going. When you get to the curbside check-in ask for the wheelchair. An attendant will push you through the whole processing at the airport and push you to the gate. Staff there will pre-board you, and push you right to the actual door of the plane. If you don’t feel up to walking to your seat, the airplane staff will help you to your seat. Make sure to tell them that you have oxygen ordered, and want to make sure they have all three bottles on board.

                    At the destination ask the stew crew if there is a wheelchair waiting for you. If not, sit on the plane and wait for one. Again, an attendant will push you from the plane door to baggage claim where Ken can get the bags, and then he will push you to your transportation, - whatever arrangements you have made.

                    On the return flight it’s the exact same procedure all over again. That service is covered by the price of your ticket, and if you don’t use it you’re only cheating yourself. Of course the attendants who push you to and from the plane’s gate are not immune from accepting gratuities – if you feel they deserve it. Sometimes the attendant works for the airline and sometimes they work for the airport, but either way the service is covered by your ticket price and/or the fees the airline pays for the use of the airport.

                    While Ken is about it, he can order special meals for you on the plane. Most airlines have fruit meals that are usually quite good – as are their salads. The rest of the choices depends on your food restrictions and individual tastes. If asked, they will recite the menu for you so you can know what the choices are. (Tell Ken to call early as they often want at least twenty-four hours notice.)

                    Does it show that when I was working I used to fly every week for a few years? The wheelchair bit was from more recent flights – and I just learned I can drive my scooter right to the plane and the attendants will store it for me until I get off. That way I can take the scooter with me on my travels. (What a deal.)
                    Burt

                    Comment


                    • #11
                      Re: Going to Minn

                      Oops, one more thing,
                      If you would prefer, you can usually rent a wheelchair fairly reasonably from a local pharmacy (check your phone book and call first.) That way you can have the wheelchair with you while you’re in Minn. Just a thought. Might as well make the trip as easy as possible. You can take the wheelchair to the plane and the crew will store it for you – you do not need to check it.
                      Burt

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                      • #12
                        Re: Going to Minn

                        Shirley, Burt is sooooo right. Minneapolis is a big airport to deal with. Wishing you the best! Linda

                        Comment


                        • #13
                          Re: Going to Minn

                          Shirley,

                          Glad to hear your taking steps forward. Best of luck and keep a Positive Mental Attitude. Things will work out...


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

                          Comment


                          • #14
                            Re: Going to Minn

                            Hi Shirley

                            I wish you all the best. I look forward to hearing what Dr. Maron said.



                            Eileen
                            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


                            • #15
                              Re: Going to Minn

                              Shirley,

                              My thoughts and prayers are with you....best of luck there! take care

                              Cynthia
                              \"It is not length of life, but depth of life.\"

                              Ralph Waldo Emerson

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