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The first of three to be tested tomorrow

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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • The first of three to be tested tomorrow

    Well it's off to Boston tomorrow to get my first born screened at the HCM clinic. I spent Easter in bed with a fever and stomach flu that lasted 24 hours , had my face stitches out today( doesn't look too bad ) so I am a little on the edge of my seat wondering how Laura will test tomorrow. I found her old echo from 2000 it read :mild atrium leaflet prolapse noted without insufficiency. The aortic valve is unremarkable. Trace pulmonic insufficiency. Normal left ventricular dimensions and wall motion . Normal right ventricle. Normal atria. Left ventricular funtion is normal. Trace pulmonic insufficiency. Mild mitral valve prolapse without insuffiency.
    LVIDd ..... 49, RVIDd....(nothing written)

    IVSD ..... 9 , LA..... 36
    LVIDs.... 34, EF ..... 58%
    LVPWd.... 8,
    So I am sitting here looking at this with a few more years of understanding and wondering , Are we about to find out some bad news once again? She complains frequently of a vague chest discomfort , exhaustion, dizziness and feeling like she is going to vomit . She was 21 (and is now 24) when this echo was done and I was newly diagnosed at age 47. I guess we wil see but I bet you all may be saying , " Should we comment ?" Please do I so value your input and it won't hurt , it probably will calm my nerves abit. Thanks for reading and helping. 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

  • #2
    Re: The first of three to be tested tomorrow

    Dear Pam,

    I don't have any comments of value, other than to say that I will pray for your daughter's result. I have a 25 year old daughter who has not yet been tested because we are trying to make sure that her insurance is in good shape. We think it is very likely that she has it, as she has had some symptoms for many years. She has kidney damage from a congenital kidney disease, so the insurance issue is a biggie. So, I can understand your anxiety and will be praying. Be sure to let us know what the results are.


    Meanwhile, I'm glad you're feeling and looking better!
    Rhoda

    Comment


    • #3
      Re: The first of three to be tested tomorrow

      Thank you Rhoda I visualize each person whom I speak with here on the board .Doing this helps me to feel the solid grounding reality of their existance. Today as we head off to Boston I visualize the beautifull supportive individuals you all are and keep those images fixed in my mind to walk with me and support me and my daughter. It took untill recently for this daughter to work through those insurance issues. So Hang in there and keep pushing for the approval. An addendum to this I recieved a call last night , from the wife of my youngest uncle ,6 years my senior . It appears he has once again been admitted into the hospital for severe chest pain with etiology unknown . He was given NTG which made him worse by bottoming out his BP. He is having trouble breathing but shows no EKG changes neww from his last . His wife could not explain what his baseline EKG shows. Well it seems my original cardiologist who totally miss read and misinterpreted all my data for 18 years wants my uncle to find out where I have been treated and see my doctor asap. Learning how to get on the right path can be slow but fortunately for some they finally listen and head in the right direction. Peace be with you. 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


      • #4
        Re: The first of three to be tested tomorrow

        The report results you listed above are non specific - I am always more comfortable when the echo is done by a specialist in the field of HCM so lets see what we come up with today.
        Good luck
        I will be thinking of you!
        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


        • #5
          Re: The first of three to be tested tomorrow

          Pam, we'll be with you in spirit. I hope your uncle is all right.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: The first of three to be tested tomorrow

            The news is great ! No HCM for Laura she can get screened again in 3-5 years but it looks good that she will never get it . Jessica , Dr. Maron and Dr. Udelson were wonderfull as they always are . I am so very relieved. Laura is happy to have me off her back also. Thanks all for caring. 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


            • #7
              Re: The first of three to be tested tomorrow

              Wonderful news!!!

              Rhoda

              Comment


              • #8
                Re: The first of three to be tested tomorrow

                I'm so happy!

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: The first of three to be tested tomorrow

                  Pam,
                  Sometimes the rain clouds part and the warming sun shines on everybody. Hope you both have a wonderful spring.
                  Burt

                  Comment


                  • #10
                    Re: The first of three to be tested tomorrow

                    Pam, I am glad that the test came out good. I hope the other kids do as well. keep a smile and let us know.
                    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

                    Comment


                    • #11
                      Re: The first of three to be tested tomorrow

                      I am glad to hear all is well! It is always great to hear about "clear" screenings!

                      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


                      • #12
                        Re: The first of three to be tested tomorrow

                        Thank you everyone for your care I will take the other 2 in July , Celeste called and is planning it for then.Fyi the clinic is switching to Fridays. Now I just have to get over my kids being upset that I had to had our 12year++ dalmation put down today. My oldest said well you're old and sick should you be put down? She'll get over it, it is easier for me because I have watched her fail and have had to take care of her. 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


                        • #13
                          Re: The first of three to be tested tomorrow

                          Hey Pam,
                          Remember I said ‘a Sunny spring.’ I now the hole the loss of a dog creates, but sometimes it’s the kindest thing one can do. That’s why I believe in VOLENTARY euthanasia.

                          On a happier note, my 15-year-old granddaughter just got the results of her echo last night, and she’s ‘clear’. She was first because she is a cheerleader – called a flyer. She’s one of the ones they throw up in the air. Her twin brother and my daughter will be tested next – in a month or so. (I plan on bringing the subject up with my son again when I see him in a week or so. But he has a lot on his plate at the moment.)
                          Burt

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