On April 25th after holding off preterm labor for several weeks I had a relatively uncomplicated vaginal birth to twin boys at 34 weeks 3 days. I previously had a baby girl in July of 2009. Ten days after they were born I was visiting them in the NICU when I started having bad shoulder blade (scapular) pain. I thought it was jusft discomfort but it got worse and worse until I had to ask a nurse for help as I thought I was going to faint.
I had never had any warning symptoms, swelling, normal blood pressure throughout pregnancies and after. They took me to the ER and ran blood tests and sent me for a CAT scan to rule out a pluminary embolism. With pain meds I started to feel better and thought ok I can get out of here soon and get back to my babies. Instead they sent the chaplain to talk to me (which freaked me out) and then the Dr. Finally shared that my blood work had come back with elevated troponin I of 1 Ng/mL which meant I had a heart event or heart attack. I had to be transferred away from my babies to another nearby hospital that could treat heart events. My troponin levels continued to increase to 9.3 Ng/mL, CK of 245 and CK-MB of 20.9 Ng/mL. I was scared and away from my babies and was told I might need heart surgery. My husband was terrified of me not making it leaving him to raise three kids alone and it was all very surreal.
I underwent cardiac catheterization and coronary angiography. While there was no coronary disease found, they found a distal left coronary dissection which luckily didn't require surgery. I hated being on the cardiac floor of this hospital with all these old people after just having been at a women's and children's hospital. No one knew what to do with me. The hospitalist they assigned me wouldnt answer my questions about drugs and breastfeeding which was important to me. I pumped and dumped for 2 days while in the hospital and had to demand a pharmacy consult as well as calls to the lactation nurse and neonatologist where my boys were still. Everything I read said the drugs prescribed were not ideal while breastfeeding and I was hellbent on it. I felt very alone and upset that I couldn't get answers I needed.
Then the NICU wanted to discharge my boys and I was still in the hospital and couldn't believe they were going to do this to us. Thankful they managed to justify just one more day there so that I was released the same day as they were. I was on metoprolol while breastfeeding for 9 months then was switched to Cardevilol and Lisinopril. I have had follow up echocardiogram every 6-12 months and so far there has been no improvement in my EF still 35-40%. My boys turn two this Saturday and it's hard to believe it's been that long since all of the craziness of PPCM. I worry about my long term prognosis and although I'm pretty much asymptomatic, I am always tired and still can't shed 20 lbs of extra weight. I hope to be around for my kids lives and pray that I will be healthy enough in the future.
My Details
- Date Diagnosed: 06/05/2013
- Child: 2
- Initial EF: 35-40
- Current EF: 35-40
Story By Hilarie Keehne Alomar