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Update on my sister


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  • Update on my sister

    Hi all,

    Some great news from my side. A while back I had posted a question about HCM patients having children (because of my sister who was pregnant and who is an HCM patient since birth).

    Well last 2 months have been a roller coaster ride for us. Not having HCM specialist in India (where my sister lives) made it tough to decide if she should have the baby or not. In the absence of her regular cardiologist (who was on vacation) the new one diagnozed her Ejection Fraction at 27%. When I showed that report to a few doctors here in US (who were not willing to talk with me in the start but did after lots of begging and pleading) they all recommended that she should not have the baby since her EF is so low. We convinced my sister to abort the baby given the risk to her health. She had agreed to do so.

    But somewhere in my heart I felt that she should have her Echo done again from her regular doctor one last time. I had a feeling that her condition might have improved. It is hard to explain but it was an overwhelming feeling as if some angel was trying to tell me not to give up. I convinced my family to do try it once more which they did. Lo behold, her EF rate had come back to 47% (her pre-pregnancy levels). Even the doctor were shocked. The cardio reccomended that she could keep the baby.

    So where we stand today is that she will have the baby. She has been asked to get checked every 15 days and have echot taken every month. We are just crossing our fingers. I know risk is still there but having the chance to have the baby is a big gift from god.

    I am really excited and praying that the same angel continues to look over my sister and that she gets through the pregnancy and thereafter safely

    Thanks all for all the information and the book that was sent to me. It was so useful. It gave me lots of inspiration and information that was very helpful to guide my family to take the right decision.



  • #2
    Re: Update on my sister

    God is good! We will pray that your sister and her baby are both fine through this entire pregnancy and for many years afterwards.


    • #3
      Re: Update on my sister

      I'm so happy for your entire family!


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


      • #4
        Re: Update on my sister


        So happy for the update. Thank you and best wishes to you all.

        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


        • #5
          Re: Update on my sister

          That is great news to hear. When is her due date.....

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


          • #6
            Re: Update on my sister

            I am praying for your sister, the baby and your family. I wish you all the very best.

            Hugs -- 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.


            • #7
              Re: Update on my sister

              The important time to watch her EF will be after the baby is born. Please make sure she is followed up well post delivery.

              Best wishes!

              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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