TBHJ1988
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TBHJ1988, November 29,  2018  9:21pm EST

Non Compaction Cardiomyopathy at 30

Hello All,

I was diagnosed with non compaction cardiomyopathy about 2 months ago. I was a healthy, athletic 30 year old up until that point. I started having shortness of breathe, then I became ill from some sort of virus all within a 2 week timespan. After a few weeks of "roughing it out" with OTC meds, i went to my PCP and a chest X-Ray showed my heart was enlarged. The next day my wife took me to the ER as my breathing was very bad and I hadn't been able to keep any food/drink down for over a week. 

I was diagnosed a few days later with non compaction cardiomyopathy. After echos and a cardiac MRI, I was told my EF rate was 14%, which is very low. We were all shocked because I never had any issues with breathing or heart issues before that month. The doctors believe I have had this for a while and the virus topped it off. Even though I am only a few months in, the doctors believe I will need an LVAD and probably a heart transplant as LVNC is a progressive disease and generally does not get better.

I am hoping with my medicine, excercise and limits on salt/liquid intake I can improve my heart function. I recently had a stress test with borderline results for normal LVAD candidates and a PFT test that was really good.

It would be great to hear if anyone else is diagnosed with the same issue. 

7 Replies
  • AHAASAKatie
    AHAASAKatie, November 30,  2018  8:56am EST

    Thank you so much for sharing your story with us! I look forward to reading more about you and helping to support you through this time. Best Katie

  • marshamd59
    marshamd59, December 4,  2018  10:20am EST

    Hi TBHJ1988,

    I don’t have your exact condition, but I just want to encourage you to do all the things the doctors are telling you, but not to necessarily listen to all the glum and doom. While in the end, down the road, who knows, it may turn out that you need a transplant, but maybe it won’t. I’ve had several doctors over the years give me a death sentence and I’m still alive and kickin’. I’ve always tried to keep a positive outlook and take it a day at a time. I hope others with your condition will see this post and comment so you can get their perspective.

    Take care!
    Michelle

  • BigMetz
    BigMetz, December 6,  2018  8:40am EST

    While my condition is different(dilated cardiomyopathy) there are many parallels in our story, though I'm almost twice your age.Long time athlete who lives an active athletic life.It was a case of pneumonia that allowed this monster to expose itself.I was in the emergency room with a pulse of 220 and later found to have an EF of 15%.As Michelle said don't dwell on the doom and gloom(whether spoken or by body language).Though I've only raised my EF to 30% I feel fantastic and have no symptoms.I encourage you to stay as positive as you can muster and know that just a little improvement can go a long way.It's so difficult to grasp everything that's happening and i certainly feel your pain.I'm 5 months into this and only my immediate family and closest friends are aware of my condition (baby steps for me).Continue with the regiment ordered by your Dr. and I believe the low salt is key.Wish you the very best and truly hope you can update us with some encouraging news.

  • vikingheart
    vikingheart, December 12,  2018  12:25pm EST

    Dear TBH1988

    I'm in almost the same situation as you.  I was diagnosed with cardiomyopathy 2 months ago, with and EF rate below 10%.  The doctor was not sure how I could walk and talk, but assured him it is my viking blood that kept me going. It was (and is) a complete shock to me and my family.  I'm only mid 40's and did not expect this at all.  

    My inital diagnosis was viral infection that caused this ... although the story has a lot more details of course.  Shortness of breath, light headed BUT no pains.  Left ventricular hypertrophy is my medical term.

    I changed my diet, with no salt intake, unless it comes naturally in the food we eat.  It has been 8 weeks and I've lost 40 lbs already and regained EF to 25% at my last cardio visit 2 weeks ago.  I'm confident that I will regain almost full EF again, and the best cure (for me at least) is as follows; take it easy, go for walks daily, do simple exercises at home (up / down stairs slowly), change of diet and positive outlook.  

    This will improve and we just need to stay positive.  If we dwell on what if and why too much, we will simply end up in a dark corner, and that is not good for us.

    I will soon be reaching out to some counselling to make sure that I deal with my anxieties, as I'm afraid that getting this close to my own mortality is doing some little tricks in my mind that will come an haunt me in the future.  We need to talk this through with people who understand us, and my doctor (although great) is not great at sharing what I should be expecting in regards to healing and how I know if a little tinkle in my heart is good or bad, or what if my blood pressure goes up.

    I have a follow-up with my cardiologist in early February, where we will review EF again and then talk about if I need an IDC (pacemaker).  Personally, I'm aiming for another improvement in EF to 40-45% :-)

    Let me know how you are getting on my friend.  Searching on Google will mainly bring you the doom and gloom, so listen to your body and your doctor.

  • TBHJ1988
    TBHJ1988, January 11,  2019  12:38pm EST

    Hello All,

    Just a quick update. My EF rate is still low, but the doctors are happy to see the overall improvement of my heart. I have no symptoms and after an ablation my PVCs are at a minimum. With the low sodium diet, excercise and medicine, they have started talking less about LVAD and heart transplant and more on the defibrillator side of things. I have been going to UVA for treatment and they are doing an amazing job. I go back in March to redo my tests and see where my heart is but I am hopeful!


    Thanks everyone for the kind words. I will keep you all updated. 

  • Donya29
    Donya29, February 17,  2019  2:05am EST

    Hello, I’m also an LVNC patient. I was diagnosed in 2015 at age 29. So far I have just had episodes of fainting and Arrhythmias. I have just been monitoring symptoms but since Wednesday they have kicked up again and I’m going back to the doctor. I feel like LVNC is frightening because you never know when something drastic will strike. Also it doesn’t help that there’s not a lot of information out there but what is available is scary!  It’s good to hear you’re doing better and managing symptoms:) 

  • TBHJ1988
    TBHJ1988, March 13,  2019  11:08pm EST

    Hello Donya,

    I am sorry to hear your symptoms are getting worse. Luckily for me, it's the opposite. I had another cardiac cath a few weeks ago and my numbers were a lot better (500) opposed to 3000 the first time when they held me for a whole week after the procedure. I am scheduled to have the defibrillator inplated at the beginning of May, so that's exciting. I have been wearing the Zoll Life Vest since October of 2018! I will still be placed on the transplant list because even though my heart is doing better, it's still very weak. My EF is still around 15%. 

    Keep your head up, Donya. I make sure to eat low sodium, monitor my liquid intake and I excercise. I also don't miss a beat when it comes to taking my medicine!! 

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