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Eileen2345 Find out more about Eileen2345
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  • Thank you Cleveland

    Well, I have a tentative myectomy surgery date for May 3, 2005 at CCF.

    Dr. Lever reviewed my echo and stess echo films and scheduled a tentative myectomy surgery date with Dr. Smedira for May 3.

    My cardiac work-up date is scheduled for April 27 at CCF.

    But I must say "Thank you Cleveland!"
    Not only because they may help me to live longer and healthier, but -- when I told Ryan that they scheduled me for open heart surgery, he gasped!
    It is the first time in 10 years since my diagnosis that I saw him react that way.

    He now believes that I have a very serious heart disease and that I need help.
    He would always deny my condition. He always said "the doctors think you're okay or they would do something about it." Well now they are.

    I finally got some respect. He even helped me with the kids last night, which was great. He never does that. Finally.

    However, I am really shook up right now thinking about traveling and having open heart surgery. But honestly, at this point, I have nothing to lose. I am going down hill so fast, that I have no choice. If I do not have this surgery, I predict that I will be in a power chair by this time next year. I truly am dying here. I just don't know what happened.

    No matter how much sleep I get, no matter how well I eat, no matter how much rest I get, I am still exhausted, even at rest.

    The oxygen helps. But I need some serious help.

    Thank you all for your wonderful support. I'll never forget it.

    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.

  • #2
    I am very happy that you are on your way to quality care and hopefully a better quality of life!

    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


    • #3
      I can't express how happy I am for you that you now have a tentative plan and that Ryan finally understands your disability. We'll be here to cheer you through this all the way to the end!

      Reenie
      Reenie

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

      Comment


      • #4
        Eve

        That is such great news, i will keep my fingers crossed for you and say a special prayer for you, you will do fine think positive and all will go great 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


        • #5
          Fantastic.
          PM me if you have any questions about the procedure or the recovery.
          Its times like these that spouses show their true colors. I am 10 times more in love with my wife today then before the surgery (and A, I was pretty smitten already, and B, She nearly had a nervous breakdown, but it was a very loving breakdown).
          I think my wife will chime in later but she will suggest that you get a relative/nanny in to help with the kids for 4-5 weeks after you get home.
          Keep us updated.
          Fx

          Comment


          • #6
            Woo hoo!

            That's great news, Eve. I'm doin the happy dance for ya...



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

            Comment


            • #7
              Wonderful news Eve!
              Leon
              God Squad co-moderator
              Nothing is as gentle as strength and nothing is as strong as gentleness

              Comment


              • #8
                Eve-
                I have you in my Prayers. Although it's very SCARY, it's also a relief to finally have a direction to prepare for.
                I know, when you start "to go downhill" - it happens so quickly!
                You're in great hands - all will be well. Wait to see how you will rejoice every day, when you can make it through a day & not be exhausted & SOB.
                Ask any questions & post your concerns, we're all there for you.
                RONNIE

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                • #9
                  Very , Very happy to hear this news EVE. You have gone through troubled waters for far too long with few alternatives. You will do great , I am sure. It will be a wonderfull relief for you to get some quality back into your life.

                  Keep us updated , it is only around the corner.

                  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
                    Fantastic Ninny,
                    I couldn’t be happier. (Do you think it’s because you are now using your real name that the good fairy has been able to find you and deliver all our love and good wishes for you?)

                    Maybe now is the time to ask Ryan (and/or your insurance company) to maybe get you some practical nurse or Nanny help from now until a month or two after your myectomy. I think it will be a big help, not only to you, but to every member of your family.

                    Listen cutey-pie, I’m going to close now and go back and watch Jim do his happy dance some more. And to think – it’s all for you.
                    Burt

                    Comment


                    • #11
                      Eve Im SO happy for you. we have read so many posts on this board where after a myectomy people have felt much better.Im praying all will go well for you up to surgery and post-op.just think 3 mos from now you could be on a trip somewhere tropical taking a stroll along the beach by moonlight.(you mentioned in a previous e-mail that you loved the beach).how great would that be!regarding your husband It is sometimes difficult for someone who has not walked in our shoes to empathize with a condition as exasperating as ours.I know in my life I can become real symptomatic at the most inopportune times,and plans sometimes have to be altered or postponed.this can at times piss off my wife and strain relations all I can do is try and be as amicable as possible and make up for it when I feel better.mostly I clam up and respond to any angry outbursts with a listless Yes Dear.or absolutely dear or you dont say dear..you get my drift.. hang in there things are going to get better for you..take care mike
                      One day at a time.

                      Comment


                      • #12
                        good to know you are getting the right treatment. It will make a world of difference. Hang in there and know it is for the best!

                        mary S.

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                        • #13
                          Thank you so much everyone for your support and positive thoughts, they mean a lot to me.

                          I need to make some arrangements for child care during post-surgery.

                          Ryan is now back to his old self again, that was short lived but typical.

                          If I may, I would like to share something with all of you......

                          Ryan and I are together because of obligation to the children and because I am ill, not because we have a loving relationship. In fact, it is a very stressful relationship for me.

                          If I was not ill, I would not be with him at all. He hates heart problems. When he was 16 years old, his mom died of Dilated Cardiomyopathy and she was ill for many years of his childhood. Those days still haunt him to this day. He does not want to re-live those days and unfortunately he is doing just that with me. He is angry that his mom was sick and died, and he is now back in that same situation with a sick person and he is not happy, and neither am I.

                          We try very hard to make things as peaceful as we can for the children's sake. But surely, if I was well enough, I would leave.

                          There has been times where I believe he has been unfaithful, for instance, I called his cell phone once and a woman answered and I asked for Ryan and she said "who's this?" and I said "Eve" and she hung up.
                          Then when I call back, no answer for hours and he says his phone was not working right. Then there are other times when he would come home and quickly put his clothes in the washer and take a shower. I could go on.

                          So I know he has been doing things, like I said, I'm here because I am stuck here and he is stuck with me.

                          Two years ago when I had blood transfusions, an emergency hysterectomy, a RF ablation and the ICD implanted all in the same week in the hospital, he was a nightmare. He expected me to take care of the children after one week home. At that time I had no time to prepare for post-surgery, this time I will.

                          I have tried to get him to go to counseling, he will not go.
                          I wish things were different, but they are not and that's life.

                          Thanks for listening.

                          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


                          • #14
                            Finally, you got some news!! Scary as it may be, you will hopefully be doing much better afterwards. I agree that you may want to consider getting outside help(nanny, etc) from now until your surgery(and then afterwards as well). You don't want to wear yourself out before your surgery. Hopefully that is an option for you.
                            It sounds like your husband may finally understand just how serious this is. I hope so, you really need him now. Take it easy, and keep us updated on how your doing.

                            ((hugs))

                            Pam
                            It's not what you gather, but what you scatter that tells what kind of life you have lived.

                            Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                            Comment


                            • #15
                              Eve i agree you will need help with the kids for a while and as far as your hubby is concernedyou can't make him do and say what he should, so right now just take care of you, so you can later take care of your kids and and your hubby will just have to suck it up and take it, i hope everything works out for you .... you deserve a break and maybe with the surgery it may open his eyes to how serius this is .... have the surgeons tell him how bad you are God Bless

                              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

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