My name is Vanessa and I was diagnosed with PPCM Feb 27th of 2013, 2.5 months after the birth of my son and 3 weeks after his passing. My son was born very ill due to a random genetic deletion that we found through genetic testing that caused his heart to be non-compacted. At his wake, I developed chest pain and palpitations. It lasted for 3 weeks. I finally decided to be checked out because of what happened with his heart and because of how I was feeling. I went to see a cardiologist and he assured me that my heart sounded fine, my heart rate was good and so was my blood pressure. He said if it would put your mind at ease, I will order an echo. I said yes. I got a call that my EF was somewhere between 40-45% and they didn't know why. I immediately went the ER at the hospital my son was treated at, where they did a stress test that I passed. My BNP was 6. They tried to put me on Coreg, but I fainted. So they decided to see if I could get better with no meds. I was watched like a hawk. I had echos almost monthly and also had a cardiac MRI done. In May, my cardiac MRI reported an EF of 57%, with no scar tissue or other structural problems! They did another echo in July to verify and it said my EF was normal. My left ventricle is still minimally dilated (51 mm), but they weren't concerned about that. My heart has never been considered enlarged. I have had many X-rays, etc and all reported no enlargement. Including 2 days after the birth of my son I went to the ER because I felt so crappy and my heart was normal size then and has continued to be throughout this journey. My BNP has always been in normal range as well (something else they checked when I went to the ER after my son was born).
So, my EF is considered recovered now. It took about 2.5 months. I made the decision to be put on a beta blocker now after recovering to protect against a back slide since no one can tell us what our future holds. I am on a very small dose of Metoprolol (12.5 a day). I feel fine on it. It made me feel a little out of it initially, but that has passed. I was told it was not necessary for me to be on one, but they had no problem with me trying it out.
My family also agreed to go through numerous rounds of genetic testing and myself, my mom and one of my sisters (all healthy) came back positive for a mutation that may cause cardiomyopathy, though there are so few people with mutations in that gene I was told no one can really tell me what it means. I went to see a well known genetic cardiologist and she told me that they used to think that if you had one mutation you were going to get the disease, but now they know it is an additive affect. She said normally the people who are very sick, have multiple mutations. She said the fact that I got better without meds meant that my heart function properly just dipped because of my pregnancy and the stress of losing my son. She said she has seen other women where it does the same. She suggested I continue to be monitored by a cardiologist just in case and I have no problems with that. It gives me a piece of mind. She also had no problems with me having more kids if I wanted to. All of the cardiologists I have seen (and I have seen 5 now) have said the same.
It has been an extremely nerve wrecking journey. I am grateful my heart was able to recover without meds because I didn't have to worry was my heart actually better on its own or was it the meds. It also made it easier for me to try a beta blocker now. I feel like everything happens for a reason. Everything my family has gone though has made us stronger. It has made me much stronger. I hope with all of the knowledge I have now, I can help others and keep myself healthy for the long haul!
My Details
- Date Diagnosed: 27/02/2013
- Child: -2
- Initial EF: 40-45%
- Current EF: 58%
Story By Vanessa Krietsch
