A diagnosis- not PPCM

[naturalmama1012]

About a month ago I had my annual follow up with my cardio and my echo showed decrease in EF from 55% to 45%. (I am 5 years postpartum after my second child and had been stable since after his birth, although immediately postpartum my EF read 25%.)

Obviously she was concerned, and also considered the possibility that this might be something other than PPCM, since I had subjective symptoms that pre-dated my pregnancies.

So she sent me for an MRI.

I'd had an MRI in 2004, but even in just a few years it's advanced considerably.

Lo and behold, it turns out I have something called Left Ventricular Non-Compacted Cardiomyopathy, which is a structural problem with the heart muscle present from birth.

I'm curious if Dr. Fett has come across this before in his studies? There doesn't seem to be much data on it, as it's rare, and what little there is, is based on patients that presented with severe dysfunction, not normal everyday people walking around with no symptoms. I have never had symptoms of heart failure. The ONLY thing I can point to is mild exercise intolerance which I remember having in childhood. Fortunately, I am in good shape, have never smoked, have excellent cholesterol and BP, so other than pregnancy I've never done anything to exacerbate it.

My cardiologist cannot really advise me on future pregnancies, and states it's possible my decreased EF on echo following my pregnancies was just my heart struggling with the hemodynamic changes in pregnancy but then compensating just fine once the stress was off. OR I could develop heart failure.

It's certainly alot to think about. My EF as measured on MRI was 50%. I am not on meds and they didn't seem to think it was indicated at this time, although I have a followup appt next month and will discuss that with them more.

[JAMESFETT]

Non-compaction cardiomyopathy (LVNC) is a genetic condition that must be ruled out when considering a diagnosis of PPCM. Its presence, verified by echo or cardiac MRI, does then rule out PPCM. It is an infrequent condition, and I have no experience with any patient with that diagnosis. I wish you the best and prolonged stability.

At the Valencia, Spain, International Congress on Cardiac Problems in Pregnancy, Radha Sarma, cardiologist at Cardiovascular Medicine, USC Keck School of Medicine, Los Angeles, CA, USA, spoke about "Left ventricular Non-compaction and Pregnancy," saying, "From these limited reports it appears that pregnancy is tolerated in women with LVNC and heart failure. It is prudent to perform echocardiograms on all babies at birth when the mother is known to have LVNC. Early detection of LVNC and appropriate medical management of heart failure and arrhythmias during pregnancy can help the women to carry the pregnancy to near term."

JD

[iluvmy2lilboyz]

Originally Posted by JAMESFETT

It is an infrequent condition, and I have no experience with any patient with that diagnosis.

Yes, you do! That was the type of CM that I was ultimately diagnosed with, 4 months after my first diagnosis of PPCM.

Becki, my youngest is almost 5 years as well. I was diagnosed with PPCM when I was 33 weeks pregnant with him and he was delivered a day later. When he was four months, I was re-diagnosed with LVNC at Mayo here in AZ. I'm happy to hear that you are non-symptomatic and that your EF is good! I wasn't so lucky. By the time of my first diagnosis, I was between 10 & 15%. I ended up being put on the waiting list for a transplant in Sept. '05 and had my transplant in Jan. '06. My EF at that time was 10%. The only symptoms I remember growing up were similar to yours. I had a tough time with physical exertion and was always run down. My parents thought I was lazy.

My story is pretty long but if you have questions, I'd be happy to answer!