Wednesday, March 02, 2005

Peripartum Cardiomyopathy

Here is an excellent overview of peripartum cardiomyopathy which I found posted on a support board a few of us PPCMers put together. I will reach my 5-year survival status in 8 months! A note to fellow bloggers Miko and Olivia on the frequency of this disease:

In the US: The prevalence is estimated to be 1 case per 1300-15,000 live births.

Internationally: The prevalence is reported to be 1 case per 6000 live births in Japan, 1 case per 1000 live births in South Africa, and 1 case per 350-400 live births in Haiti.


  • At 3/02/2005 04:28:00 PM, Blogger Lester said…

    O.K, now I really want to go to nursing school! I had to look up a few words in my medical dictionary (yes indeed I have a medical dictionary) but it was a great overview of the disease.

  • At 3/02/2005 06:02:00 PM, Blogger Miko said…

    Good for you, Lester!

    Dawn, did you have no idea about your condition until it showed up? When and how did you first learn?

  • At 3/02/2005 06:28:00 PM, Blogger dawn said…

    Miko, when I was diagnosed, I had gone at least one week misdiagnosed with "new mom anxiety". I ended up at the local ER, where they knew I was in heart failure, but unsure why. I was agressively treated with blood thinners and sent off to the big docs in Boston, and they diagnosed me with PPCM. My ejection fraction (basically the amount that the heart pumps out) was 15-20%. I also had two clots in my lung.

    Yes, this was the first I had ever heard of the disease, as well as the ER doc who saved me. I just changed general practioners, and it was the first he'd heard of it too.

    I was 7 days post partum when diagnosed, and had a normal pregnancy. Oh, except for the marathon labor: 42 hours. I hold the record, as far as I know.

  • At 3/03/2005 01:12:00 AM, Blogger JohnFen said…

    1 in 1300-15,000 live births in the US?

    That's a pretty large error spread. I wonder why? And with Japan's being 6,000, roughly in the middle of the spread, it sounds likely that Japan and the US actually have about the same rate. Am I understanding this correctly?

  • At 3/03/2005 06:52:00 AM, Blogger Miko said…

    Aaargh! I was just thinking about how much I would hate Dawn (sorry!) if I didn't like her so much, and now she goes and beats me in the extended childbirth stakes as well! I was in labour for 30 hours. (Only half of it was hard labour, though.) Remember that this was roughly 20 years ago in New Zealand, and C-sections were only performed for a very good reason, and I didn't qualify, so they let it drag on. But I don't understand how they could do that in your case, Dawn! It must have been awful.

    I wonder why there is such a large disparity between the countries? Lifestyle factors, or genetic, or what?

  • At 3/03/2005 07:20:00 AM, Blogger dawn said…

    John, I believe you are understanding it as well as anyone. It seems not many are even trying to understand it. There is very little research being done, some in Haiti and some in S.Africa. It is possible to have a mild case, and for it to go unnoticed. In the US, there is no central database. A bunch of us submitted blood samples last year, and that data is still being compiled. The stats say it's more common in the south and in women of color, but from the 350 women or so who've checked in on our support board, those stats don't hold true. Of course there could be many reasons for this.

    The scenario I find most intriguing: two similar mothers have signed onto our board in the past year. They were both surrogates for mothers that had previously developed PPCM. Both surrogates also got PPCM. It is unpredictable in some ways, I had a severe case and recovered completely. Some women have a moderate case and go downhill quickly.

    Miko: sorry to win that labor contest. Really, the first couple of days I was just uncomfortable enough to not sleep. The hard labor part was only 15 hours or so, not bad for a first baby, and I did have an epidural for the last 5 hours. I was brought in to the OR for a C/S, but I delivered vaginally at the last possible minute. She was "sunny side up"- a tough delivery.

    For the most part, it wasn't awful at all. I had a lot of support, and I felt as in control as one can be in that situation.

  • At 3/03/2005 07:31:00 AM, Blogger Miko said…

    Sweet, lovely, lovely epidural! I wanted to *kiss* the anaesthetist! And yes, my little boy was sunny-side-up too. They say it's common in first births. Explains why it was also the last birth, in my case!

    Has your condition been a common one throughout the ages, or is it a modern one? Can careful pre-natal monitoring detect it?

  • At 3/03/2005 02:57:00 PM, Blogger dawn said…

    It's likely been around as long as women have been giving birth.

    It's most often a post-partum disease, so while careful prenatal monitoring would prevent crisis (maybe), the majority of the women are diagnosed within one month of delivery. Most of the women are diagnosed within one month of delivery.

  • At 3/04/2005 03:16:00 AM, Blogger JohnFen said…

    Maybe this is getting too geeky to be of interest, but I'm still stuck on those numbers. I mean, why is there such a large error spread for the US, but none worth noting for the other nations?

    Such a spread insinuates that there's hardly any data and they're guessing. But they don't have to guess as much in, say South Africa?

    Anyway, I'll bet I make a stab at Miko's question about why some nations are so much worse off than others: poverty. In general, the poorer the nation the higher the rates of all disease. It's because of all the usual suspects such as nutrition, access to medical care and how sophisticated that care is, sanitation, water, etc.

    I'll bet dollars to donuts that if you map out regional poverty in the US, you'll find that there are higher rates in those areas.


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