I wanted to thank you for starting this site.
I was diagnosed with PPCM in May 2000, more than six weeks after my twin daughters were born. My symptoms started with a strange cough, followed by tightness in my chest and an inability to sleep in any position other than sitting in my chair. I went to the ER 8 days after the girls were born, there I was diagnosed with pneumonia. I averaged two doctor visits a week for the six weeks following my discharge. The pneumonia diagnosis haunted me, once labeled, it took forever before a physician was willing to look at other explanations. My OB tried to treat me with anti-biotics for three weeks and then referred me back to my PCP. He told me that it was a different kind of pneumonia and I was put on other antibiotics. Finally, I went back to his office because I was not feeling better and had been unable to eat, or keep down any food, for two weeks. He told me that my weight had not changed in this time (implying that I was exaggerating) and said that he would take another x-ray to prove to me that I was getting better. He sheepishly came back into the exam room after reviewing the x-ray and told me that (believe it or not) I was right and was not any better. He referred me to an pulmonoligist who took one look at the x-ray taken in his office and correctly diagnosed me with PPCM, my heart was twice as large as it should have been. Even though I only saw him once, I thank him for saving my life.
I was referred to a cardiologist with a daughter only a few months older than mine, so he knew what responsibilities I had at home. The cardiologist told me that he thought I was retaining 15 to 20 pounds of water (which would explain why my weight had not changed even though I was not eating). With drug therapy my EF went from 10%-15% in June 2000 to 50% in September 2001. I lost over twenty pounds of water once the diuretics and drugs took effect. I feel great! The only drug I have to take now is my ace-inhibitor. It is all starting to feel like a bad dream. Now that my girls are approaching the terrible twos, I sometimes have to remind myself how lucky I am to have this opportunity to be driven crazy by them.
The former PPCM site was a wonderful help to me when I was diagnosed and recovering. There is so little information out there that being able to read about others experiences was very comforting. I know that your site will be invaluable to many scared women who need some information and the ability to share their concerns and worries with other women in the same situation.
Thanks for all your efforts and may God bless you for your work,