My boys were in nicu (neonatal intensive care unit) for about four days and they were going to go ahead and release me two days before they were to be released. That last night in the hospital, I had woken up at 2 o‘clock in the morning and could not breath. My husband was sleeping on a cot next to me, and I didn't want to wake him. I was so scared. I had pushed the call button for the nurse to come in and in the mean time I thought I was just having a panic attack, which I also suffer from. So when the nurse came in, I had told her never mind. In my mind I was so scared, but I thought I was just feeling the pressure of knowing that I was going home with out my babies (not really home but to a motel room because I had them 4 hours away from home). So I went to the nicu and just sat there for the rest of the night, just holding my twin sons.
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The next day I was released and still very swollen, and the same thing happened again at 2 o'clock in the morning. It had felt as if I had a brick laying on my chest. I stayed awake all night expressing my milk for my sons because I could not lay down. I thought maybe I was just having a panic attack and that I would be better as soon as I was able to take my boys home. That went on for about another two nights. By that time, I was a walking zombie. I had not slept since I had the boys. I was so swollen I had to wear slippers because my shoes didn't fit. Finally the boys were released. We took the 4-hour drive home and were greeted by our family who we had not seen us in about a month. They looked at me and noticed that I was very swollen, but I told them the docs said it was normal I didn‘t mention to anyone about the “not being able to breath” part! It seemed to be happening only at night. Well that soon ended after a long night of the same thing, and by 5 o'clock in the morning, I finally looked at my husband and said I had to go to the emergency room. I could not breath.
We had placed a call to my OB/GYN doctor but he did not return my call so my husband took me to our family doctor who took my blood pressure: 160/110. My heart was beating so fast they gave me nitroglycerin and said to go to the emergency room. We didn't have time to wait for an ambulance. I walked in and was greeted by my OB/GYN who ordered a bunch of tests and finally confirmed it was ppcm. My ejection fraction was in the 20‘s and they didn‘t think I was going to make it!
All I could think about were my babies. I had waited so long to see their faces and now they were telling me I might not make it. All I could do was cry and cry. They kept telling me to calm down because I was making my blood pressure worse. I couldn't calm down. I couldn't see my babies because they were preemies and it wasn't a good idea to bring them into the hospital, they said. I kept asking myself what on earth did I do to deserve this. They told me all we could do was try the meds (LASIX,COREG, POTASSIUM,XANAX) and see how well I would respond.
Well after staying three days in intensive care they finally said the meds were working and a day later I was back at home but, along came the depression. I had missed out on my sons’ first week at home. I had to take all these meds along with their side affects and wondering and asking myself why and how????????
This is a horrible thing to have and I don’t wish it on anybody, but there has to be some type of information out there... the warning signs and what to look for. As of now, there isn’t anything about peripartum cardiomyopathy in any pregnancy books. PPCM happens in about 1-maybe 15,000 births also I have read 1- 4,000 births so why isn’t there any information out there?? I always wonder about the women who have lost their lives, and the children who don’t have their mothers to nurture them!!! They told me then I had a 50/50 chance of survival, well... I proved them wrong. I am a fighter and will keep fighting to get the information out there because maybe it will save another woman’s life.
I thank you very much for letting me share my story with the Women’s Heart Foundation. I have also found a support group via the internet at amothersheart.org. There are about 200 members and they all have similar stories. -- Jenifer W.
Symptoms of cardiomyopathy:
Echocardiograms (ECG) are ultrasound pictures taken of your heart. They're much like ultrasounds a pregnant woman will receive of her baby. They are not painful, but are sometimes uncomfortable. This test can show heart enlargement, decreased cardiac output, movement of the heart, and the electrical functioning of the heart. This is a very important test for diagnosing and following Peripartum Cardiomyopathy.
An Electrocardiogram (EKG) may be done to quickly show electrical functioning of the heart. Holter Monitors may be prescribed for a period of several hours or days to record the rhythm of the heart over longer periods of time.
Chest X rays, Chest CT scans, and MUGA or RNV are radiological tests that may be used to show heart size and function, or congestion in the lungs and the veins of the lungs.
- Shortness of Breath. This can be exaggerated upon exertion or when lying flat.
- Fatigue. Some fatigue is normal with pregnancy and while caring for a new baby, so it's important to know your body and what is out of the norm.
- Swelling. Ankles, feet, hands, and face are all places fluid retention can cause swelling. In severe cases, abdominal swelling may also be present.
- Palpitations, or feeling like your heart is racing, stopping, skipping beats, or fluttering.
- Frequent night time urination.
- Fainting. If this happens, please seek emergency medical attention immediately.
- Chest Pain. Always seek immediate care for chest pains.