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  • 1.  Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-23-2023 15:32


    This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

    Madeleine Katz
    Washington Permanente
    Seattle WA

  • 2.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-24-2023 09:10
    Hello Madeleine and welcome to mended hearts!  

    I'm so sorry you had to wait this long to be diagnosed but I'm grateful you are getting the right help now.  I was born with a congenital heart defect too - Tetralogy of Fallot.  I had a shunt at one year old and total repair surgery when I was 6 years old.  I have a leaky valve and heart arrhythmias now that are being closely watched and monitored. I'm 56 years old and I'm so grateful for my doctors!  My cousin has a pacemaker and ICD and they have saved his life!  I'm sure others in this community will be able to reassure you about the process and importance of your upcoming surgery. 
    One thing I was always told when I became an adult was to continue to go to doctors that understand congenital heart problems.  There are many congenital heart clinics that are best for treating and following those of us that were born with heart defects.  Your local Children's Hospital could direct you.  There is also a directory of all the Adult Congenital Heart Clinics in the US.  As we age it is important that you have access to both pediatric cardiologists that understand the defect and it's affect on the heart as well as adult cardiologists that understand the aging process and it's affect on the heart.  Adult Congenital Heart Disease Programs have both expertise!  Looks like there's a ACHD program at Seattle Childrens.  I will be praying for you!  Let us know how you are doing.  I have found that with the right care, I have been able to live a very full and active life despite my congenital heart defect!  
    Take care,

     (now back in Pittsburgh, PA) 

  • 3.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-24-2023 21:33
    Hi Tina!

    Thank you so much for your warm welcome! I appreciate hearing about your heart defect as well and how you are active and thriving, that gives me a lot of reassurance. t is quite a lot for me to process, and I'm currently getting mixed information about how urgent putting in my defibrillator is. I'm waiting to get a date, and two cardiologists I've spoken to and the electrophysiologist who did my tilt test-- and saw that I went into asystole and then arrhythmia, recommended the ICD somewhat urgently. Unfortunately my electrophysiologist who I've been seeing is on medical leave and had my pre-op consult scheduled for 7/29. Of course the chances of having another syncopal episode in which I don't recover are extremely low, though it's just a little scary right now for me. Anyways, I suppose I'm just venting and hopefully will have it sorted out in the next few days.
    It is a little anxiety inducing that my current doctors don't have any experience with my particular heart defect. To speak to your advice regarding finding an adult specialist, I absolutely agree! I'll give Seattle Children's a call this week, thank you so much for the suggestion. 

    I'm so reassured to have found this forum and appreciate the support!


  • 4.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-25-2023 02:32
    I'm so relieved that you will contact Children's Hospital! I'll be praying that they can see you soon to confirm the proper treatment.  Arrhythmias are scary and passing out is a symptom that shouldn't be ignored.  I'm hopeful that you can discuss your situation and be seen soon by the congenital docs.  Let us know how it turns out! 
    Holding you prayer,

  • 5.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-28-2023 09:29

    Hello Madeleine, I also have LVNC.  I found out a few years ago at age 56 after years of increasing tiredness.  I had a pacemaker defib placed in at the time and it definitely helped.  My ejection fraction was 11 so it saved my life.  Denise

    Denise Andersen
    Carver MN

  • 6.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-28-2023 23:31
    Hi Denise,

    Thank you so much for sharing your experience, I'm so glad for you that they were able to find your LVNC and treat it. I'm thankful I've caught it at age 34. Today I had another EP doc tell me that he doesn't recommend ICD since I haven't had any documented arrythmias (apparently my tilt test was just aystole for 18 seconds), I have my procedure scheduled 7/11 and of course now am confused about what to do. Overall it sounds like the risk of arrhythmia increases over time, and I'd rather not worry, although I'm also anxious about committing to having the pace/maker ICD for life. I suppose it's worth the procedure for peace of mind. Clearly I have a lot of anxiety about all of this. Thank you for your response!


  • 7.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 06-29-2023 12:45
    Hello Madeline,

      I do not have the same congenital heart defect as you do. But I've had a pacemaker for almost 34 years. Since I was so young it's just always been a part of me. However, I don't feel like it's affected my life a lot. I mean there are definitely things I can't do anymore like bumper cars. But most of my life is quite normal and I definitely know that without it I couldn't do anything. I know that this is a difficult situation. Just know that a lot of people have pacemakers and have had them for a long time.


  • 8.  RE: Left Ventricular Non-Compaction with syncope getting ICD this week!!

    Posted 07-10-2023 19:39
    Hi Katie,

    Thank you for your response and reassurance! My ICD/Pacemaker insertion is scheduled for tomorrow, I've been quite nervous about it. I'm starting to feel better about the process but it is quite stressful. Thank you for reaching out!