Monday, October 8, 2012

Health update...10 months later

Post-partum cardio myopathy is a disease that affects the heart’s left ventricular ejection fraction (basically you don't produce enough oxygen for your body, causing your heart to work overtime and become enlarged). While what causes PPCM is predicted to be hormone-related, what the actual trigger is, is unknown. What is known is that PPCM starts somewhere between the last month of pregnancy and the first five months post-partum. Somewhere between 1 in a 1,000-4,000 women in the U.S. are diagnosed with this heart disease.

I had my 9 month echo in September, and while I have a ways to go, I was really happy with my progress. My ejection fraction (EF) is at 30-35%. (A normal EF is between 50-60%. When I was first admitted onto the cardiac floor in January, my EF was 15%).

So, while I still have 15-20% to go, hitting 30 (or possibly above) is huge.

Some EF percentage milestone:
- At 30% of higher, the risk of cardiac arrest has lowered greatly and is now closer to that of a normal persons
- At 40% the pacemaker conversation goes away
- At 40%, while I wouldn't be fully recovered, I would have a normal life expectancy
- At 50%, I would be considered fully recovered (and would finally get doctor approval for cardiac activity)

On the scary flip side, a decrease in EF would be cause to skip the pacemaker and start talking heart transplant.

My next echo (and cardiology appointment) isn't until March. Dr. M is really happy with my progress and thinks all my new medications (and higher dosages) are doing the trick. After my appointment, Dr. M bumped me up to the highest beta blocker dosage possible. Medicine adjustments are hard, but I've gotten used to be exhausted that following week.

As for how I'm doing, I'm having a lot of good days now. Sadly, those good days are always followed by a bad day. I know it's because when my energy is high, I now get excited and want to do as much as possible. Dr. M refers to this as a "heart hangover."

I learned the hard way in August, that having a weakened heart also means having a weakened immune system. I was admitted into the hospital with pneumonia for 4 days, because my body couldn't break a 103 degree fever. I now have a pneumonia vaccine, so at least that illness is now crossed off my list for awhile.

This is the second time since May that I've gone to the ER with a scare. I must say I feel so medically saavy when I talk to the check-in attendant "I have PPCM with an EF of..." It always gets their attention, and there's no waiting room waiting for this girl.

Yep. I'm always looking on the bright side.


  1. I hope the meds you are on are Carvedilol and lisinopril. Those two drugs together were part of a study that concluded that when taken together improved EF and over time returned the heart to its normal size.

    I know this because my husband has Marfan Syndrome, and his EF was dropping and his heart enlarging. With this magical combination of drugs, his EF is now between 45 and 50, and his heart has decreased in size.

    If these are not the drugs you are on, please ask your doctor about them, as this study was new last year when my hubby was put on them.

    Hope this helps! :)

  2. Thanks for your input!

    I used to be on these drugs, but no longer am. Carvedilol lowers your BP, and since I don't have a blood pressure issue – I could only be on the lowest dose, which wasn't still dropping my blood pressure too low.

    As for the Lisinpril, about 2-5% of people on it get a really bad dry cough. Well, I bet the odds again and lucked out with the cough. So that had to be switched as well.

    It sucks that I can't be on his first choice of meds, but clearly they were doing me more harm than good. If been on these new meds since June, and clearly they seem to be doing the trick.

  3. Oh wow. That really sucks! I hope you continue to do well on regime now.
    Best of luck to you!

  4. So glad to see your posts again, and your beautiful pics in the last post. I am so happy to hear that your EFs are improving and I am sending good thoughts for your continued improvement.