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Beverly Update

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SteveT Find out more about SteveT
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  • Beverly Update

    Hi folks,

    I know its been some time since Beverly or I have been able to give you an update on her status, but I had a little free time this morning and thought I'd check in with everyone.

    Our family moved to Minnesota (from the Washington DC area) on August 30th, and on the 31st Beverly had an appointment to see Dr. Maron for a 3 month check-up. After her echo and blood work were done he told her that she was too sick to go home, so after living in Minnesota less than 24 hours she was admitted to the hospital. During her stay they took 8 pounds of fluid off of her and implanted an ICD. A few days later she went home.

    Her first full day home she had walked up the stairs and was hanging up a towel in the bathroom when her ICD fired, then went on to fire a total of 10 times in the course of only a few minutes. Back to the hospital... up the beta blockers etc. After interrogation it was concluded that it had fired for sinus tach, so the nurse reprogrammed it and raised the threshold so that it wouldn't trigger so easily.

    In the last two months she's been in the hospital 6 times, usually because its been so difficult to keep ahead of her fluid volume. She's listed for transplant and we're waiting for the call that they've found a heart for her. In the meantime she's able to do very little. She's on 250mg of Toporol XL, and an additional 125 to 200mg of Lopressor (depending on the day) just to keep her heart rate below 100. Needless to say with that much beta blocker shes tired all the time. She's also on Lisinopril (ACE Inhibitor), Aldactone, Lasix, and several anxiety and sleep drugs. One difference between Beverly and many other end-stage patients is that Beverly's heart muscle isn't thinning out and dialating like most others. The muscle is so heavy and dense with scar tissue that its staying thick.

    On a positive note, my company has allowed me to work from home until after the transplant is done. I'm able to get kids on and off the school bus, and take care of Beverly while we wait for a heart to become available.

    Please keep praying for Beverly and for our family.

    Steve

  • #2
    Re: Beverly Update

    I'm sorry you've had so many trials but I'm so happy that you're in a place that will accomodate you so well. The hospitals are wonderful and your company sounds like a true God-send. I'll keep you in my thoughts.

    Reenie
    Reenie

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

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    • #3
      Re: Beverly Update

      Oh my Beverly

      Good luck i hope you do get your transplant soon


      I'm getting ready to go and talk to our transplant team here

      Hope you are feeling better
      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

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      • #4
        Re: Beverly Update

        Our prayers are with Beverly and the entire family. Thank you for the update and please keep us posted, Linda

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        • #5
          Re: Beverly Update

          Thanks for all the thoughts and prayers. The one thing I forgot to mention is that for about the last month she's been having short v-tach episodes. She didn't know what to call them until one of the last times in the hospital the nurses told her that her monitor was showing that she had just been in v-tach. They've never lasted for more than 30 seconds or so but still, its a sign that the disease continues to progress.

          Steve

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          • #6
            Re: Beverly Update

            If it makes her feel any better i get the V-Tach also several times a day myself it is just annoying to me and her i thought they were palpitations, i told my husband when he comes near me....see what you do to me, but that isn't too bad considering we have been married for 29 years

            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


            • #7
              Re: Beverly Update

              Send our Love to Bev! I think your employer is amazing and should be thanked for their efforts!

              Take care and best wishes,
              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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              • #8
                Re: Beverly Update

                Dear Steve & Beverly,
                Prayers of hope and salvation are sent to you from my home to yours! May God guide the perfect and best heart to Beverly and allow the good doctors to perform the perfect and best transplant procedure. May the angels of God fill your life and allow all these wonderful works to be done in divine order!

                Blessings to you and yours,
                Sharon

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                • #9
                  Re: Beverly Update

                  Dear Beverly and Steve,

                  My prayers and thoughts are with you as well.

                  Rhoda

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                  • #10
                    Re: Beverly Update

                    Beverly, I have been thinking of you alot and praying for you and I hope that you get your heart soon and it's great that you have such an amazing husband to stand by your side and be there for you the way he has and is, in that aspect your so blessed. I will pray for you both!
                    Jen

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                    • #11
                      Re: Beverly Update

                      Thank you for the update. I have been thinking of your family and I am glad that you are in a place that you will get great care. I do wish you all the best.
                      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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