It's already been over a month since my last post and I was diagnosed with PPCM. I have been extremely fortunate to find a support group that is full of knowledge and encouraging words. I have learned so much about the disorder and how it should be treated.

The website is A Mother's Heart. There is lots of information on the web page, but the biggest wealth of knowledge is from the people living it on the message boards. Through this group I was also able to be in contact with Dr. James Fett, a cardiologist who is known for his research and publications about PPCM. He is an amazing person who reaches out to both doctors and patients involved with PPCM in the interest of spreading the word about the disease. He makes himself available to answer questions from people like me who have PPCM and also to their doctors for consultation free of charge. He is doing an incredibly service to the medical community in an area that gets overlooked often.

Through reading on A Mother's Heart and speaking with Dr. Fett, I now have answers to a lot of my questions.

I now know that PPCM is a form of dilated cardiomyopathy that manifests as heart failure, typically in the last month of pregnancy or somewhere in the first 5 months postpartum. Diagnosis can only be made when there is no other reason for heart failure present in the patient in conjunction with the pregnancy. It occurs in about 1 in every 1300 to 4000 live births in the US. It is marked by a decreased left ventricular function in the heart. For reasons that are still unknown and being researched, an inflammatory reaction causes damage to the heart muscle cells, and as a result the left ventricle does not contract (beat) as effectively as it should, decreasing the amount of blood (output) pumped out to the rest of the body.

Symptoms of PPCM are very similar to symptoms that are often experienced at the end of pregnancy for a lot of women, but usually go on to be more severe. They include swelling, shortness of breath when lying down or with activity, getting easily fatigued, persistent unexplained cough, rapid weight gain. After learning more about PPCM, I am able to recognize the symptoms of PPCM and heart failure that I had during the last couple of weeks of pregnancy and for a while after I had Ben. I minimized a lot of them because I had been on bedrest and I figured a lot of my difficulties were from being "out of shape". I even mentioned being extremely fatigued after taking a shower to my OB and he thought it was probably because my body was used to resting also. After having Ben I was recovering from the blood loss, the magnesium and the c-section so I wasn't sure how I should feel. I felt like my "healing" was taking longer than it was supposed to, but I figured I was just being impatient. For the following 8 months I also experienced symptoms of decreased cardiac function, but again, I tried to convince myself that I was imagining things.

Last time I talked about how my cardiologist didn't go over my echo results with me but that I thought they might not be that bad since he didn't add or change any medications or do any lab work. After speaking with Dr. Fett and the other ladies at A Mother's Heart, I realized how important my LVEF (left ventricular ejection fraction) value was in getting the best treatment. The cardiologist said that things should go back to normal on their own but cautioned me against strenuous activity. A normal LVEF is 60% or more, 55% is considered recovered from PPCM, since my cardiologist had such a positive outlook I was thinking I might be in the neighborhood of 45%. I requested my echo report and was pretty disappointed to see that my LVEF was only 35%, which is only a little bit over half the normal LVEF.

I realized that I needed to stop minimizing my symptoms (chest tightness, shortness of breath, heart palpitations and intermittent chest pains) because I was doing more harm than good to myself and my family by trying to act like everything is okay.

The standard treatment accepted by the American Heart Association for heart failure with decreased LVEF is two medications normally prescribed to lower blood pressure. One is called an ACE-Inhibitor which I am currently on for the high blood pressure that started back up in November, and the other is called a Beta Blocker, which also lowers blood pressure and protects against arrythmias that can sometimes arise in people with decreased heart function.

Dr. Fett says I am still within the window of opportunity to regain heart function, hopefully full heart function, but I do need to be on both of the medications.

I was pretty upset at the candid demeanor the cardiologist had, so I touched base with my PCM and requested a second opinion. I am in the process of that now. My referral went to the new cardiologist about 2 and a half weeks ago. I ran into problems when I called though, apparently there is only one doctor who treats this kind of heart problem and typically she likes to review the patients records before an appointment is made. I dropped my records off 2 weeks ago and I have yet to hear from them. I called last week and the receptionist said my records were still on the doctor's desk, she hasn't looked at them yet. It's getting incredibly discouraging because when I first called the practice, they were scheduling appts as far out as April, and now its two weeks later, so add two weeks to that. But that's a whole 'nother story.

I've also learned that if I recover heart function to 55% or above and my heart shows good contractile reserve on a stress echo, conditions are favorable for being able to have another baby without issue. There is about a 20% risk of relapse under those conditions. The really bad news is that there is a greater than 50% chance of not recovering my heart function should I happen to relapse. That scares me. It's just not fair to leave Brad and Ben, they're my everything and I don't want to leave them, so yeah. I guess we'll cross that bridge if and when we come to it.

Anyways, that's all for now.

For more information about PPCM go to
A Mother's Heart
Peripartum Cardiomyopathy Network