so scared

[chopstickgirl]

Ok so...I am pregnant. I think. I don't know what to think really. Or do.

here's my story-I just need to ramble and have some support from others that understand this gutwrenching fear that is PPCM.

DH and I tried for 3 years to have a baby and finally, miraculously, got pregnant. I had Mairi in 2004. Had PPCM. EF of 25. Also got a horrible awful DVT that went undetected up into my groin/abdomen.

I really wanted to nurse my daughter, and so only went on dioxgin, metroprolol and diuretic. At 6m pp I was at 35%. I also lost almost 100lbs last year. Got healthy.

At my 1 yr in January, my EF was 50%. Which I believe is the "cusp" of normal. Only on metroprolol and diuretic now.

I can't take any estrogen birth control b/c of my blood clot, so we were just being careful and also feeling like, hey it took so long to have mairi, obviously I'm not a fertile myrtle, right. HA.

So anyway, It's been about a year and a half PP, I feel great, never have issues, and was about to go for my year and a half checkup. Guess it'll be a different kind now.

I just am scared to die. We wanted one more baby, and planned to try for a post PPCM baby, but a few years from now, kwim? I had 50 more pounds to lose, etc.

When I saw the doctor in January, he said if I got preggo now, I would have like 50% chance of dying. I don't think this is true, when I am at LEAST at 50% ef, if not more (as that was 6 months ago, so I hope that I am like 60% now...) but it's just stuck in my head.

I just need some loving, and assurances please.

Making my appt tomorrow...

[Lisa V]

I personally think that 50% is a very good EF to have and to become pregnant with. If your EF did not increase in the first 6 months of being diagnosed that is when your odds are not in your favor. I believe that you need to find out exactly what your current EF is and then you need to find a HIGH RISH OB and an cardiologist that will work together to give you and your baby the best of care. I am sure you are very very nervous and I know I would be too ......................Make that doctors appointment and find out what your EF is now...............

[chopstickgirl]

Thanks Lisa...the reason my EF has risen so slowly is b/c I nursed/am nursing. The cardio told me if I didn't take beta blockers etc, it would mean a longer recovery, and it has been (but by last summer I was feeling great, kwim?) So yes, I need to find my EF now, that will help me, I know. Even though I know the things doc fett says, i also keep replaying what the stupid doctor in boston told me in january, that at an EF of 50 i would have a 50 percent change of dying if i got preggo. that is freakin scary. this sucks. i am pissed all over again that i have PPCM. i should be able to be joyous and happy like i was when i found out i was preggo before. not scared of dying.

[heartfulloflove]

Hey :) 50% is a pretty awesome EF for what you've been through. I completely understand your worry, and I'd be worried too, but according to studies you are the lowest risk for PPCM recurrence, since your EF has recovered.

I stand by the notion that I was developing or had developed a cardiomyopathy during my eating disorders. I got pregnant with an EF of 50. Twice. The first time it actually went up a little. The second time it didn't change and I had a little bit of enlargement. I know this isn't the same as PPCM, but I did awful things to my heart prior to my pregnancies and have learned that it's an amazing thing how strong it can be.

I think your odds of making it through this safely are waaaaay better than 50%. I'll be thinking lots of good healthy thoughts for you!

[LauraNP]

Jen,
First of all take a deep breath. We'll get through this together. I will send you a PM with my doctor's info. They got me through my first pregnancy and I'm at 31 weeks with this one and still doing ok.

I'm here for you.. if you have any questions about local stuff and how to get the care you need or need anything I'm here!

[JAMESFETT]

So far as risk of dying "50 percent" in someone who had a diagnosis of PPCM and then a recovery to EF 50 percent, that information is not backed by observation. There are no medical reports of subsequent pregnancy in PPCM patients that support that figure. It doesn't matter where in the world those medical reports originate, you will not find that to be the case. Even in women who begin the subsequent pregnancy below 50 percent EF, the risk of death is much less than 10 percent with the first subsequent pregnancy post-PPCM diagnosis. But for those who have recovered heart function (over 50 percent EF) the risk of death is less than 1 percent, and the risk of relapse is approximately 15 percent. You may want to read:
Fett JD, Christie LG, Murphy JG. Outcomes of subsequent pregnancy after peripartum cardiomyopathy: A case series from Haiti. Ann Int Med 2006;145 (4 July 2006): 30-34.

I would be happy to discuss this issue with you or your physicians if that would be helpful.

JDF

[miracle baby]

I think you'll be ok.50 is great we will be here with you all the way.Prayers and best wishes.I'm happy for you.Just make sure you get a good team of doctors.Congrats.