So, I just (yesterday) got released from the hospital after an 11 day stay in ICU-stepdown (between a regular room and full Intensive Care). After suffering bizarre symptoms on&off for some 8 weeks, I was rushed to the emergency room, and initially admitted to a regular room, but was quickly transferred to ICU-sd with a diagnosis of Congestive Heart Failure (CHF). No previous history of heart problems.

After many tests over several days, it was an MRI that finally revealed the cause- a rare, probably hereditary condition known as Non Compaction cardioMyopathy (NCM). Basically this is a thinning and weakening of the heart muscle walls to the point where bloodflow drops to dangerous levels. I would get winded picking up a pair of socks off the floor.

My symptoms are mostly normalized now and am today starting my rehab at my parents’ house. Oh, did I mention that there was also a clot in my left ventricle that could have broken off at any time? (Luckily it was completely dissolved by the time I left.)

So, really just wondering if any of you have heard of NCM, and have information to share? How long for rehab?

(I might also add that for the previous year my health had been on the upswing and I was working out 5x a week. So as I said in the other thread, FU 2020!)

This message has been edited. Last edited by: kkina,

I hope it’s reversible so you can get back on your feet soon.

Glad you recovered and hope that your rehab goes well. 2020 does suck.

Thank you. I actually am back on my feet, just not very steady yet!

I think we have a heart doc on board. Hopefully he chimes in.

I have CHF. Docs discovered it last Nov. tests show I have a 15% ejection fraction. I never had an inkling anything was amiss. No symptoms.

I wore a heart monitor for a month or so & then the cardio docs had me wear a life vest (external defibrillator) from Jan thru Apr.) the docs have labeled me as having “sudden Cardiac Death syndrome” I take Rampril 2.5 mg Daily & carvedilol 3.125 mg (twice a day). No rehab has been suggested, just told me to enjoy life & keep active...I’ve got enough chores to keep busy & I walk a couple blocks a day.

I got winded, sweaty & dizzy once or twice & had to rest. I thought I was gonna go out “ala Fred Sanford, I’m comin’ to see ya Elizabeth, it,’s the big one!” But both episodes passed & left me still above ground. I don’t know what else to say as I’m new to this also. Well, I take that back. I don’t know the Bible well but I know somewhere in there it’s written. “No man knows the hour.”

I look at life a bit different and look forward to my next adventure. Keep on truckin’ my friend.

I also have CHF. A year ago my echo indicated an EF of 20-25. After being on Entresto for almost 2 years (I think) an echo a week ago indicated an EF of 60. Psychological relief if nothing else. Also have a mechanical mitral valve and pacer/ defibrillator ICD. Not a $6 million dollar man but closer than some, just don't have the super powers.

Noncompaction cardiomyopathy is different from what the others are posting about, as you appear to know from the OP.

You're in SF. UCSF should have someone who can work with you with this.

It's a newer diagnosis. I've encountered cardiologists that didn't even know about it. Sad but true.

EDIT: UCSF Familial CM Clinic

Thanks to all who replied. Correct, NCM is a relatively new type of diagnosis. My uncle, a retired surgeon who himself recently suffered a heart attack, had never heard of it.

Certainly many people have congestive heart failures, but very rarely is it caused by NCM. I do have a possible chance of strengthening my heart muscles.

There’s a high probability of the condition being hereditary. Therefore this recent incident has mandated a family genetic sweep: my brother and sister are about to be told they need to get some tests.

This message has been edited. Last edited by: kkina,

Glad you’re OK kkina. Still got to send you an email sometime. Been putting it off.

I’m basically ok, but will probably be making some significant changes to my life at this point, both personal and business-wise.

Kkina—
I’m really glad you were diagnosed and are doing well. Cardiac MRI’s are extremely useful for cardiomyopathy.
I have seen echocardiograms of people with NCM, but only in teaching situations. To my knowledge I never had a patient with it. As you said, it’s quite rare.

Do you know if you will be a candidate for an internal defibrillator in a few months?

quote:

Do you know if you will be a candidate for an internal defibrillator in a few months?

It will definitely be up for discussion after rehab is completed. I’m pretty sure I don’t want one. Prefer to take my chances.

Patients with NCM commonly have ventricular arrhythmias, and you will probably have multiple Holster and event monitors done. Here’s a quote from the Up To Date article on the condition:

quote:

For patients with LVNC with an LVEF ≤35 percent and New York Heart Association (NYHA) class II to III HF, we suggest ICD implantation for primary prevention of SCA [9]. Limited data are available to support this approach

LVEF is left ventricular ejection fraction, it’s a number you should know in your case.

Listen very carefully to what your cardiologist recommends.

Also, as you know by now, this is a genetic condition, and your having it implies the need for genetic testing of close relatives.

Thank you. No final decisions have been made yet, and the next few months should be interesting. One thing they did tell me, though, is that my electrical profile is pretty much perfect. Also, No coronary disease whatsoever.

quote:

Originally posted by kkina:

quote:

Do you know if you will be a candidate for an internal defibrillator in a few months?

It will definitely be up for discussion after rehab is completed. I’m pretty sure I don’t want one. Prefer to take my chances.

I suffered a viral cardiomyopathy a few years ago. Was in the hospital for three weeks ; the cath exam did not have a detectable ejection fraction ( mostly dead).

My pacemaker-defib implant has kept me alive for over 20 years! I strongly advise the implant; almost unnoticed and cheap insurance!!

Glad you made it through!!

quote:

Originally posted by tleddy:
My pacemaker-defib implant has kept me alive for over 20 years! I strongly advise the implant; almost unnoticed and cheap insurance!!

Glad you made it through!!

I agree. A pacemaker is an easy outpatient surgery and is there to assist your heart if needed. If it’s not needed it will still send signals to a monitor next to your bed so your heart doc can see if or when the pacemaker has been called on. With any EF under 35 it’s highly recommended.

Wishing you all the best. Did you get a fancy tactical life vest?

quote:

Originally posted by Oz_Shadow:
Wishing you all the best. Did you get a fancy tactical life vest?

I’m afraid you lost me on that one.

Kevin, I wish you well and a healthy road to recovery ahead, God Bless my friend.