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Wife Diagnosed with End-Stage HCM

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SteveT Find out more about SteveT
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  • Wife Diagnosed with End-Stage HCM

    Hi, and thank you for being such a great organization.

    My wife Beverly was first diagnosed with HCM at age 14. She's told me stories that as a very young girl she would sometimes get so out of breath after taking a basket of laundry up the stairs that she needed a nap afterwards. In her early youth she was a star athlete in the local and regional communities, and thought that everyone's heart felt like it was going to beat out of their chest when they ran around the bases on the softball field. At 14 they found the disease completely by accident while she was being treated for pneumonia.

    She spent several years being treated by a local cardiologist and also participating in the HCM research studies at NIH. I guess it's no secret around here what has happened to their program. A few months ago my wife stumbled across this website while researching HCM and pregnancy and has since had several email and phone conversations with Lisa, who gave Bev a great deal of information, especially about HCM specialists she could see to get a more thorough diagnosis.

    We live in Virginia, but my family lives up on the Minnesota and Wisconsin border in the US, and we had a family vacation already booked for June, so when Dr. Barry Maron's name came up the choice was made. All I have to say is, I've never been as impressed with a medical staff as I have been with the folks at MHI. At one point or another every member of Dr Maron's research staff came in to attend the testing, and Dr Maron himself even came in during the ECHO to see real time pictures.

    When the testing was over and all the questions were answered Dr Maron gave us the news. Needless to say its not an easy thing to listen to someone tell your 27 year old wife that she has end-stage HCM, is well into CHF, and needs to get on a heart transplant list. This all happened on June 22nd, or a week and a half ago.

    Bev's health has deteriorated quite a bit in the last year. She's retaining quite a bit of fluid (Mr Zenovich estimated 35 lbs or more) to the point where 2 months ago a simple chest cold turned into full blown pneumonia in a couple of days. She gets winded very easily, and she gets "jello legs" at least a couple times a day.

    All that said we're a very fortunate family. We were so impressed with the staff at MHI we've decided to move to Minnesota to have her disease managed by Dr Maron and the HCMC staff. My company has agreed to transfer me to its Minnesota offices and allowed me to work 80% from home. And after several days of discussions with my insurance company, they've agreed to the transplant surgery. Believe me, as bad as the news has been I know how blessed we are to be in the position we're in right now.

    Finally, I want to thank you for this organization. Had it not been for your presence and this website we may not have found Dr Maron, and may never have known how serious things were. Your mission to educate, as well as advocate is indeed a worthy one. Thank you all.

    Steve Tye

  • #2
    Re: Wife Diagnosed with End-Stage HCM

    Wow, Steve,

    That is a lot of burden to bear and your attitude is wonderful! I will pray that you can get the help, support, encouragement, and heart that both you and Beverly need.

    Rhoda

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    • #3
      Re: Wife Diagnosed with End-Stage HCM

      Best wishes on your move to Minnesota and on Bev's health. She sounds like someone who will do the very best with whatever comes her way. Hope a great new heart becomes available or that she gets so much better that she doesn't need one.

      Sending positive vibes to both of you.

      Sue

      Comment


      • #4
        Re: Wife Diagnosed with End-Stage HCM

        I live here in virginia and i go to richmond Virginia and see a doctor by the name Dr. Gilligan. Where in virginia did you live, i hope that everything works out for you Bev, your family will be in my prayers

        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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        • #5
          Re: Wife Diagnosed with End-Stage HCM

          Steve and Beverly,

          I very much admire your strength and perseverence in dealing so well with Beverly's diagnosis! You are both in my thoughts and prayers today as you continue to try to get this all sorted out.

          Take care,

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

          Comment


          • #6
            Re: Wife Diagnosed with End-Stage HCM

            Bev is a wonderful person who has the right attitude to deal with her situation. I remain impressed with her outlook and know she has the support around her that she needs!

            Bev contacted us a few weeks ago and was able to get a quick start on seeing a specialist. I am very happy the HCMA was able to assist her on her road to feeling better.

            Best wishes to your entire family!

            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


            • #7
              Re: Wife Diagnosed with End-Stage HCM

              Steve & Bev
              I'm so sorry to hear about your situation, but happy to hear your do have a "Plan". It sounds like you will both be capable, Strong & Loving enough to see this Plan thru.
              Always remember The Power of Prayer. We will all be praying for you both
              BE WELL
              RONNIE

              Comment


              • #8
                Re: Wife Diagnosed with End-Stage HCM

                Bev, Steve, thank you both for sharing your story. I'm so pleased that you have found what a true specialist can do for you. The news you are having to digest isn't great, but now you have options that you didn't have before. Steve, I'm impressed with your company for being so accomodating. Keep up the good work.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Wife Diagnosed with End-Stage HCM

                  Steve and Beverly,

                  I wish you both the very best and hopefully soon everything will fall into place. My thoughts and prayers are with you.

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

                  Ralph Waldo Emerson

                  Comment


                  • #10
                    Re: Wife Diagnosed with End-Stage HCM

                    Dear Beverly and Steve
                    It broke my heart to hear of someone so young to receive the diagnosis you had to endure. Having support in this type of situation makes a person stronger. Please keep the attitude you have now. I will include you in my prayers.
                    Esther

                    Comment


                    • #11
                      Re: Wife Diagnosed with End-Stage HCM

                      Dear Bev and Steve,

                      I'm glad you found us. You have a hard road ahead of you but it sounds like you have all the love, support, and medical care anyone could ever ask for.

                      Midge, one of the members here, recently had a transplant. You should check and see if she can talk to you about the process. She may have put her contact info in the member directory.

                      I wish you all the best and keep us posted,

                      Sarah

                      Comment


                      • #12
                        Re: Wife Diagnosed with End-Stage HCM

                        Steve and Bev, I too, want to wish you the best and will keep you in my prayers. Beverly is not a real common name, but it's my sister's name also. Linda

                        Comment


                        • #13
                          Re: Wife Diagnosed with End-Stage HCM

                          stev and bev, I am so sorry to hear about how hard things are going or you and I to admire you stregnth in dealing with hard times so well and staying close and I'll be praying that things will get better. GOD BLESS YOU!
                          Jen

                          Comment


                          • #14
                            Re: Wife Diagnosed with End-Stage HCM

                            Steve, I just found your post and Sarah is right I had a heart transplant on Mar. 19-04. I had mine in Rochester Mn. I live in Iowa. Please feel free to pm me with any concerns or questions. I am 57 y.o. and am doing better post transplant then pre transplant. I had had HCM since I was 27. The hardest part of the transplant program is waiting for your heart to come. Keep in mind she is in good hands and it will come. Please let me know if I can help.
                            Midge

                            Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                            ICD&Pacemaker 1996
                            Heart transplant March 19, 2004 @ Mayo Rochester
                            Mom of Kaye.

                            Comment


                            • #15
                              Re: Wife Diagnosed with End-Stage HCM

                              To everyone,

                              Thank you all for your kind words of hope and encouragement. MY family and I need that. Steve has been such a blessing to me from the start, never caring if we had biological children to now up and moving so I can get the best care. I am not afraid of the days to come for me only for my husband and 4 adopted children. I know that whatever God's plan is that it is divine and his purpose is always for good. Please keep us in your thoughts and prayers as the road toughens.

                              Take care and God bless!
                              Beverly

                              Comment

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