3 months

[LovinLife]

This past Friday was 3 months since my dx and 3 months since the birth of my baby girl! I'm so lucky to have found you all! I remember when we came home from the hospital that my husband was helping me try to figure out exactly what PPCM was/is. He found a site and said, oh it says if you make it through the first 3 months then you'll probably be OK. I know that sounded to him like 3 months would be easy to survive, but that horrified me. Obviously there's old info out there, but I didn't know that. Luckily, it didn't take me long to find all of you and Dr Fett to get the correct information. It may seem silly, but that 3 month number still weighed over my head for some reason. So I'm happy to be officially past that! It seems like it's been so much longer, more like 3 years. I have felt great, up until ab a week after Hudson's surgery, so I'm hoping that I just need to recharge...that was probably the biggest beating my body has had to take since DX. I just wanted to say thanks for being here for me, and let you all know how great you've been during these trying times. Hopefully my hormones are getting back to normal and so I am LOL Please say a little prayer that I'll recharge and start feeling better again! I haven't been worrying as much lately, but being so tired has reminded me of how I felt when I first came home. I don't want to go back to those days, so I'm hoping my TEE on July 2nd shows that I'm either the same or improved even more. Thanks so much for your support...you girls mean the world to me!

[JAMESFETT]

The most critical time with a PPCM diagnosis appears to me to be the first 2 weeks after diagnosis, when the danger of refractory ventricular tachyarrhythmias is the greatest. This is also why, aside from the diuretics and ACE-inhibitors, it is so important to also have some beta-blocker coverage (carvedilol or bisoprolol or metoprolol) as early as one's ciruculatory system will tolerate it. The reason for this is probably most importantly that beta-adrenergic receptor antibodies are formed when PPCM develops, and these antibodies place the heart in "overdrive." The beta-blockers counteract the effect of these proactive or agonistic autoantibodies. Glad you've passed the "3-month hurdle" with flying colors.

JD

[LovinLife]

Thanks Dr Fett. You really are an angel! You have helped so many of us, calmed our fears, and explained things when no one else would take the time! Your efforts have definitely saved many many lives. That must be the greatest feeling in the world! Keep up the good work! :D

[JAMESFETT]

Thank you, Tish. Fact is, I am unsatisfied, and will be until and unless the actual cause of PPCM is uncovered--we're making progress. In the 1960's and 1970's I experienced deep regret when political events in Congo contributed to cutting short my air trips on medical emergencies at doctor-less hospitals in a country caught up in civil war. I didn't realize then that many years later I would have opportunity to work on a medical condition devastating to mothers in Haiti and elsewhere. In Congo, during 6 years of work there, I never saw or recognized even one case of PPCM.

JD

[pistons22girl]

What is the cause believed to be? Do you have any personal theories? Or is it still 100% mystery?

[JAMESFETT]

The leading theory is that a viral infection serves as a trigger, the heart is damaged, and then an immune dysfunctional inflammatory cardiomyopathy follows, with more damage to heart muscle. Some studies have actually shown virus in heart muscle in PPCM; but we need more studies to confirm this. What makes this theory so attractive is that PPCM looks exactly like heart failure from post-viral infection dilated cardiomyopathy.

After that there are less likely theories that the trigger may be:
1)increased/abnormal hormones, such as prolactin,
2)fetal cells in the maternal circulation (almost discredited)
3)an unidentified toxin (unlikely)

JD

[pistons22girl]

Now wouldn't it be nice if awareness was more widespread and doctors knew to check us for viral infection early on? I'm sure it would help. Couldn't we all request medical records & find out if we were tested? We've got a large bunch of PPCM'ers on here. I'm sure our records could indicate if we were tested for viral infection in the beginning & what the results were. I know a lot of us probably were & just didn't know it. I don't know, just a thought. I'm sure it could help. Isn't there a web site that health care professionals can go on to pull up anyone's medical records? My cousin pulled up mine one time, she is a nurse. She told me a was a very sick puppy. Couldn't looking at some of our medical records early on reveal if we were tested? Due to lack of awareness I'm sure most of us weren't though.

[reezlemom]

Tish, I'm so glad you found us and that you're doing well! At 3 months out, I was just getting a diagnosis, so you're further ahead than I was. You're gonna do great!