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Is this HCM? Needing Some Opinions


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jenmaireee Find out more about jenmaireee
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  • Is this HCM? Needing Some Opinions

    Hello people, I am a 20 year old female living in England. I am currently being reviewed by a Cardiologist on the NHS and I am looking for some opinions here, so I hope nobody minds me posting!

    I have experienced severe exercise intolerance since I was around 11 years old. At least, thatís when I can remember it starting from, perhaps it was earlier. Within a minute or so of cardio (running, jogging, uphill walking, rowing etc.) I have always become very short of breath. Completely and utterly out of breath. In school I have always been at the back of the class in PE (gym class), especially in things like cross country. Miles behind other people in any class I have ever participated in, with overweight people, smokers and seniors always fine whilst Iím totally struggling. I have also experienced palpitations for a lot of my life, especially when I lie down I can feel them in my throat now and again. My resting heart rate is low in the 50ís or 60ís and I canít feel a racing heart or palpitations in a row. Iím also fatigued most of the time but Iíve recently been given iron for very low iron levels that have only developed recently.

    I have had two echocardiograms done and the last one I had done I got given the results. Both were said to look fine and my results are as follows:

    IVSd - 0.84cm

    LVIDd - 4.60cm

    LVPWd - 0.79cm

    IVSs - 0.92cm

    LVIDs - 2.84cm

    LVPWs - 1.09cm

    EDV (Teich) - 97.24ml

    ESV (Teich) - 30.66ml

    EF (Teich) - 68.46%

    %FS - 38.18%

    SV (Teich) - 66.58ml

    Ao Diam - 2.38cm

    LA Diam - 3.18cm

    LA/Ao - 1.33


    LVOT Vmax - 1.20m/s

    LVOT Vmean - 0.81m/s

    LVOT maxPG - 5.77mmHg

    LVOT meanPG - 2.98 mmHg

    LVOT Env. Ti - 289.52 ms

    LVOT VTI - 23.41cm

    HR - 207.24 BPM

    AV Vmax - 1.43m/s

    AV maxPG - 8.13mmHg

    RVOT Vmax - 0.95m/s

    RVOT maxPG - 3.64mmHg

    PV Vmax - 0.73m/s

    PV maxPG - 2.11mmHg

    TR Vmax - 1.89m/s

    TR maxPG - 14.23mmHg

    Other than this, trivial mitral valve thickening was noticed only with ďfully functionalĒ valve leaflets. Sinus tachycardia apparently caused summation of the mortal inflow pattern as well. This echocardiogram was done approximately 15 minutes after a stress ECG which was also normal with no arrhythmias present. However the amount of time I could run for was limited and I was told I was just deconditioned which I know isnít true. I have participated in dance since I was two years old and I even noticed in my classes that I was getting more short of breath than everybody else. I stopped dancing a few years back because of moving house. Anyhow, my point is that Iíve tried to be active but my stamina has never improved and never got drastically worse. It is the same as it was 10 years ago with absolutely no improvement. Another note would be that no heart murmurs were heard but I can feel a buzzing over the left side of my neck near my collarbone that feels different to all my other pulses. All of my ECGís have come back fine.

    I have been scheduled for a cardiopulmonary test and a tilt table test. Hopefully something will come of those but I wanted peoples opinions on this potentially being Hypertrophic Cardiomyopathy. What are the chances and does this seem likely? Itís stressing me out as exercise intolerance seems to be a running theme. Iím scared and I want to enjoy my upcoming holidays. As far as Iím aware I have no obvious family history of HCM. However, my father had open heart surgery last year for aortic regurgitation and a triple bypass. He is in his late 70ís. He had a heart murmur since he was in his 40ís from the aortic valve and heís had high blood pressure most of his life; extremely high. My half brother on my fathers side of the family had a random batch of endocarditis with no obvious cause. It nearly killed him. Heís in his 50ís. He had many tests including an MRI and they donít know what caused it at all. My grandad died at 66 suddenly of a ďmassive heart attackĒ and my aunt died in her 70ís of heart related problems. My cousin died in her 30ís very suddenly and she used to get seizures as well. I have three other half siblings who are in their 40ís and 50ís and seem fine at the moment heart wise. I am also the oldest full sibling of five. The four younger ones seem fine and my younger brother competes professionally with martial arts. I seem to be the only one in my entire family that has this awful struggle with exercise, stamina and exertions shortness of breath (stairs, hills, cardio etc.).

    Thank you for you input in advance everybody, Iím losing my mind a little here and I need some opinions.


  • #2
    Hello Jen, It sounds like you have felt in distress, breathingwise for quite a long time. The most important thing to do is to see a cardiologist that has a wide base of knowledge including HCM. The U.K. Has a Cardiomyopathy association with a phone line that is staffed by registered nurses trained in cardiomyopathies of all kind: Cardiomyopathy.org phone for the help line is 0800 018 1824.
    Also, shortness of breath can be caused by lung issues as well as heart issues. An Exercise VO2 study can help distinguish between lung, heart, and deconditioning issues and could be very helpful. It sounds like that might be what you are scheduled to have soon. Make a list of questions to ask your doctor and be sure you get the answers you need.
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani


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