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Pregnancy, HCM and "Athelete's Heart"

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  • Pregnancy, HCM and "Athelete's Heart"

    Hi Everybody,

    This is my first post to this forum so let me introduce myself as well as explain my relationship with HCM.

    I live in Tokyo, Japan and my wife (who is Japanese) has HCM. She was diagnosed with this disease about 11 years ago at the age of 22 when she was undergoing a "catheter ablation" surgery for WPW (Wolf Parkinson White). At the time of this discovery she was at the peak of her professional career as the member of the Japanese National Women's Soccer Team. She had to immediately quit playing due to the risks posed by HCM. I guess one could say that she was pretty lucky to not have died on the field because she had been playing soccer since she was 10 years old.

    Because of her unique history, she also has another heart condition called "Athlete's Heart" where the outer muscles are unusually thick due to the prolonged cardio activities as an athlete. She has since made a dramatic change to her career and now works in an office as a "Financial Comptroller". A much less risky profession for her heart.

    We recently found out that she had become pregnant and I don't even know where to begin with all the worries that have been going through my mind since this discovery. We have seen a bunch of doctors here in Japan including the one who first diagnosed her with HCM about 11 years ago. He had originally told her then that she might never be able to have kids due to her condition but in our recent visit he said that now that she is pregnant, there is nothing that he can do and that she has to either go through with the pregnancy or have an abortion. The other doctors are not so confident. They have said that they have seen women with HCM having successful pregnancies and there is nothing to worry about but I seriously wonder if they have looked at her medical history carefully.

    So to make a long story short, we would like to ask the members of this forum if they or anybody they know have HCM, "Athlete's Heart" and have gone through a successful pregnancy. And if any of you are from Japan or know of qualified HCM specialists in Japan, we would be most grateful for their contacts as well. We are also open to the idea of traveling to the US to see a specialist if necessary.

    It was a great moment for us when we discovered this site. It has been very motivating reading all the stories from the posters in the forum. I apologize if the post is too lengthy. I felt that I had to present the full history in order to clearly explain our situation. Thanks very much for understanding.

    S.r.

  • #2
    Re: Pregnancy, HCM and "Athelete's Heart"

    S.R. - Welcome to the site and let me begin by saying lets not get too worried at this point.
    I find the timing of your post very "timely" - it is Mothers Day here in the USA - so I begin by wishing your wife a happy almost Mothers Day, if she so chooses.
    Athletes heart and HCM are really 2 seperate conditions - although it is possible that your wife would have had a regression is some hypertrophy after she stopped playing soccer - she has HCM and that is also where her rythm problems likely stemmed from as well. It is possible to have WPW with HCM but some believe that there is likely a link between these conditions in those who present with HCM.
    Pregnancy and HCM - good news most patients tolorate pregnancy very well - delivery can be a bit tricky - you will want to discuss delivery options with your doctors - avoid epidual as it can drop the B/P very suddenly. My daughter is almost 8 and I was diagnosed with HCM when I was 12...while some people with HCM have some issues that make pregnancy more difficult - for the overwhelming majority it is fine.
    If you want to come to the States for an opinion let me know I can help you get to a center that can assist you.
    Whatever you and your wife choose to do, please know the HCMA is here for you both.

    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)

    Comment


    • #3
      Re: Pregnancy, HCM and "Athelete's Heart"

      SR,

      Hello. I'm curious. Are you American? If so, are you connected with the military? My husband is in the Air Force and we have lived at Yokota near Tokyo and also at Misawa in northern Japan near Hachinohe. He was diagnosed with HCM while were were living in Misawa. I guess I don't have any more to add to what Lisa said, but your post just left me curious.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Pregnancy, HCM and "Athelete's Heart"

        Originally posted by Lisa Salberg
        It is Mothers Day here in the USA - so I begin by wishing your wife a happy almost Mothers Day, if she so chooses.
        Although not a traditional Japanese tradition, Mother's day is also celebrated here and she thanks you very much for the greeting and also wishes you the same...if not a belated Mother's day.

        it is possible that your wife would have had a regression is some hypertrophy after she stopped playing soccer
        We talked to the doctor who originally diagnosed her with the disease and he compared historical data to her present condition and mentioned that he had not seen much change.

        Pregnancy and HCM - good news most patients tolorate pregnancy very well - delivery can be a bit tricky
        Thank you very much for the support. We have learned a great deal from this forum and also read the recent publications in favor of pregnancy and HCM. All of this has been comforting and we hope that all will be ok.

        If you want to come to the States for an opinion let me know I can help you get to a center that can assist you.
        We are taking this option seriously and I will probably call you in any case.

        Thanks again and we will keep you updated on our progress.

        S.r.

        Comment


        • #5
          Re: Pregnancy, HCM and "Athelete's Heart"

          Originally posted by Reenie
          Are you American? If so, are you connected with the military? My husband is in the Air Force and we have lived at Yokota near Tokyo and also at Misawa in northern Japan near Hachinohe.
          Hi Reenie,

          Sorry I am not American although I did go to College in the US. We live in Tokyo and have been to Yokohama a couple of times but never to the base.

          S.r.

          Comment


          • #6
            Re: Pregnancy, HCM and "Athelete's Heart"

            I am glad that you have found us. I do hope that your wife's pregnancy will continue without any complications. Good luck to the both of you.

            Reenie
            Reenie

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

            Comment


            • #7
              Re: Pregnancy, HCM and "Athelete's Heart"

              Hi all,

              I had a question regarding "skipped/stopped" heart-beats. My wife says that before her pregnancy she used to get skipped heart-beats a couple of times per year but now that she is pregnant the frequency of these irregular beats has increased. She has also noticed more "stopped" heart beats where she can count upto 5 seconds sometimes before the heart resumes again.

              Is this normal for pregnant HCM patients? What is the effect on the child when the mother's heart stops for a few seconds?

              Thanks,

              S.r.

              Comment


              • #8
                Re: Pregnancy, HCM and "Athelete's Heart"

                Hi,

                Well, I don't think that the baby is going to be seriously affected by mom's heart pausing. However, your wife needs to get checked out by her cardiologist immediately. She shouldn't be having long pauses and her medication needs to be adjusted (or added) to try and get rid of them.

                She should get an ECG, or a Holter if they don't show up on the ECG, to confirm that she is pausing and go from there.

                Keep us posted,

                Sarah

                Comment


                • #9
                  Re: Pregnancy, HCM and "Athelete's Heart"

                  S.r. - Baby depends on Mom to supply oxygen thru the placenta/circulation. Call the OB doc and cardiologist about this symptom of increased irregular beats. If she should feel dizzy or short of breath with them, it could also be a sign of concern for the baby. Be safe and get it checked out. Best wishes, keep us posted. Linda

                  Comment


                  • #10
                    Re: Pregnancy, HCM and "Athelete's Heart"

                    Hello...I just wanted to encourage you. I have three wonderful children, ages 12, 14 and 17. I have HCM and have known about it since I was 12. I am 38 now. My doctors started telling me when I was 16 that I should not have children. God thought otherwise. I did very well through my first two pregnancies and only had problems with my third because I was overweight. I wish you the best.

                    Comment


                    • #11
                      Re: Pregnancy, HCM and "Athelete's Heart"

                      I love hearing success stories like these. Everyone should read "How to Raise a Healthy Child: In Spite of Your Doctor" by Dr. Mendelsohn. The book explodes the myth of doctors as all-knowing and all-powerful.

                      Comment


                      • #12
                        Re: Pregnancy, HCM and "Athelete's Heart"

                        I would have the OB and the cardiologist discuss the case ASAP. You want to make sure that mom and baby are doing well...
                        RE having kids after being advised otherwise...
                        22 years ago my sister, Lori, told her cardiologist she was expecting. He said dont worry I can get someone to help you. She was happy...until she clearly understood that the "help" was an abortion. She said NO I am having this baby. The doctor said why when we know this is a genetic condition (in 1981 mind you) and your child has a chance of being less than perfect...she said I am having the baby end of story. 2 years later she had her 2nd. 10 Years later I saw the same doctor and said I have some news...and your responce WILL be " I am happy for you"... he said oh your expecting a child? I said Yes and I know your feeling you shared with my sister 13 years ago....I have seen a high risk doc and I was told I am OK to have a baby...so that is that... Becca is now 8 yrs old.

                        LIfe is never simple, never a sure thing all we can do is our best...and hope for a good outcome.

                        Be well,
                        Lisa
                        Of the 3 of them 1 has HCM (Stacey)((at this point))... and I suspect in a few years Stacey will be thinking of being a mom too....
                        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


                        • #13
                          Re: Pregnancy, HCM and "Athelete's Heart"

                          My mom has HCM and she had 4 kids. 2 of us have HCM. She wasn't diagnosed till after she had her first (me) but the knew she had a murmur before then. With the right care, it can be just fine.

                          S

                          Comment


                          • #14
                            Re: Pregnancy, HCM and "Athelete's Heart"

                            Thank you all for your encouraging comments. It gives us confidence to know that there are others who have been through what we are experiencing right now.

                            My wife had a 24 heart monitoring checkup yesterday and the doctor told her that her condition is a little more serious than what he had originally thought. He has asked her to stay at the Hospital from now on. We have about 2 1/2 months to go (Due date November 5) and we hope that everything will be ok. In some sense I am glad that she will be staying at the hospital so that if something happens she can get immediate attention.

                            I will keep you updated on how things progress.

                            S.r.

                            Comment


                            • #15
                              Re: Pregnancy, HCM and "Athelete's Heart"

                              Dear SR,

                              Although it's hard to have your wife stay at the hospital for so long, I know you're happy that she will have the best of care. I wish both of you the best of luck.

                              Reenie
                              Reenie

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

                              Comment

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