Incidence of Undetected PPCM?

[heartfulloflove]

So it appears I did in fact have a mild PPCM.

My question is, does anyone have numbers on how many cases might just be missed altogether? I mean, had I not gone to see my cardiologist for the palpitations - which appear to be unrelated - I never would have known. I'm now fully recovered (SF 40, EF 65, up from 24.5 and 49) and never had treatment other than careful watching and a commitment to my exercise routine.

Could it be there are possibly a much greater number of women out there who have PPCM and just never know it, and even go on to have normal subsequent pregnancies?

[JAMESFETT]

In Haiti, we discovered latent (subclinical) PPCM by doing echocardiograms on what were thought to be normal women, i.e., no signs of heart failure, normal exam. We found in that group about 10 to 15 percent who actually had abnormal echo, with evidence of a mild dilated cardiomyopathy, and which subsequently evolved either to complete healing or to worsening heart failure, the latter usually with a subsequent pregnancy. Because PPCM is so common in Haiti, this approach to discovering latent ppcm was more feasible because it did not require huge numbers of echos on normal postpartum mothers. You can read about it in the International Journal of Gynecology and Obstetrics, 2005;90:161-166. In the USA it would require doing a very large number of echos, and that would be cost-prohibitive, so you are not likely to see such a study in the US.

JDF

[heartfulloflove]

I had a feeling something like that might be the case. Thank goodness for your research and for your sharing all of this information with us!

[JAMESFETT]

In the USA, from reports from a number of ladies on this network, we suspect latent PPCM also exists in the USA, and that some of those with latent or subclinical PPCM ("forme fruste") are only discovered when their next pregnancy results in the diagnosis of PPCM when clinical symptoms develop. This is a very logical possibility because we know that severity of disease in recognized PPCM varies from very mild to very severe. This would be a pattern common to many diseases, and particularly the infectious and autoimmune diseases.

JDF

[heartfulloflove]

We have a very high incidence of autoimmune disease in my family. On my father's side and my mother's, so I've got a double shot. My autoimmune symptoms flared big time during this recent pregnancy, so it makes me wonder.

In people with autoimmune responses that trigger PPCM, is a viral origin also suspect...or is there evidence that an AI process alone can do this? Now that I have more concrete answers (that I did have a mild case) I have moved on to the "okay now why did it happen" stage.

[JAMESFETT]

That's a very good question, and a critical one. Right now, the evidence in human PPCM favors a viral infection or presence triggering a process that picks up steam by conversion to either an autoimmune process or an abnormal immune response in which more heart muscle cells (cardiomyocytes) are affected, don't function, and lead to dilated cardiomyopathy with eventual heart failure. At the same time it is recognized in experimental animal (mice, rats, rabbits) studies that the cardiomyopathy can result without any viral presence at all.

JDF

[heartfulloflove]

So it sounds possible that the immune changes that occur naturally in pregnancy could be enough to trigger the autoimmune response or abnormal immune reaction. I'm basing my guess on the fact that pregnancy lowers normal immune response. A virus would too, though for different reasons. While pregnancy means a little "invader" must be protected, thus necessitating the immune response dip...a virus keeps the immune system busy, thus also lowering it's defenses to other things. Maybe the combo is the PPCM formula...and maybe just one or the other is enough when coupled with an autoimmune response? I've heard it said that the hormones of the pregnancy cause PPCM. I always figured that was a catch-all, but now it kind of makes me wonder if that isn't necessarily far off base.

Sorry, it's interesting to me on many levels to ponder over...both as someone with it and also since I have a great interest in medicine in general. If I win the lottery, I'm going to med school! lol :D

[JAMESFETT]

I encourage you to move on your hopes, dreams, and aspirations. The lottery isn't even necessary:)

My hypothesis: Most Important Factors Accounting for the High Incidence of peripartum cardiomyopathy in Haiti (and maybe elsewhere). These factors compose the 3 points of the triangle, and all three come together to cause PPCM:

1. Genetic predisposition 2. Viral pool in Haiti (or other precipitant)
3. Pregnancy-altered hormonal and immune system changes

JDF

[SerenaWelsh]

....The perfect storm?

[JAMESFETT]

That's right, if the conditions are just right the storm (ppcm) will happen. Pregnancy definitely has its risks. So we have to work at decreasing the risks that are adjustable.

JDF