Susan

 Peripartum Cardiomyopathy Support Network

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I'm Susan. I had an uneventful pregnancy up until about the last 6 weeks when I developed a lot of edema, gestational diabetes and a moderately elevated blood pressure. I was already seeing a perinatologist (high risk ob-gyn), so he just kept a close eye on me. I kept working full time in my job as a cardiac rehabilitation RN.

2 weeks before my due date I gained 11 lbs of fluid in 3 days. Because my blood pressure was still not severely elevated and there was no protein in my urine, my Dr. took me off work with orders to rest and take it easy. I was induced on my due date because of the diabetes and my blood pressure which had reached about 140/100.

After a long and nightmarish induction which finally ended up with a c-section almost 18 hours later, I thought we were finally on the road to health. However, my blood pressure remained elevated even after delivery and I did wake up once in the hospital very short of breath...with a weird little crackling sound in my breathing. Everything improved in the morning and I felt fine...if not a little tired. I was also relieved to see that I was actually losing a LOT of the fluid.

I was sent home 5 days post partum with my blood pressure still elevated, but not dangerously high. I had been home about 2 nights when I awakened quickly and suddenly...my heart rate was pounding along at about 130 beats per minute and I was very short of breath. I slept that night in the recliner in my daughter's nursery. And the next night and the next night. Each morning my symptoms would improve..except for the fatigue. I am an experienced cardiac critical care nurse who actually specializes in the care of patients with congestive heart failure, so you would *think* I would recognize the signs and symptoms.

My mom was staying with us and she was begging me to call a physician. I called my perinatologist THREE times during that first week home only to be told I needed to "move around more" and "not worry so much." I took the passive patient role and let them convince me that everything was fine. Finally on Friday I called a phsyician friend of mine who ran an EKG and saw that it was mildly abnormal. A chest x-ray was ordered and it was noted that I was in congestive heart failure, with an enlarged heart and fluid on both of my lungs. I was prescribed a diuretic and a cardiology appointment was made for first thing Monday morning. I had an echocardiogram, chest x ray, bloodwork and EKG before I even saw the cardiologist.

I remember sitting in the exam room and making small talk with my cardiologist and seeing the numbers "ejection fraction 25-30%" on my chart. I remember the fear. I had taken care of patients who were on VENTILATORS with ejection fractions better or the same as that. I could barely breathe...my husband was sitting in the corner with a tiny newborn over his shoulder. He is an engineer so he had NO idea what all this meant.

My prescription was rest, rest and rest + diuretics and an increasing dose of ACE inhibitors (which is and should be the gold standard of care for congestive heart failure patients). My MIL flew in to help out at the house for almost a month.

My EF was finally up to 35% two months later and I was allowed to do cardiac rehab at the facility in which I worked (a hospital). The first day I could barely walk 5 minutes on the treadmill. I had to lie down for almost an hour before I could go pick up my daughter at the childcare center. I was soooooo weak. And puny. Very hard to accept when I was previously SO healthy. I had walked and swam almost 3 miles a day,every day before I conceived. I didn't smoke, I ate healthy.

I am now exactly 2 years post diagnosis. My last echocardiogram was at the low end of normal (ejection fraction 55%) and I feel great most of the time. I do get tired, but who knows what that is from. I work < 20 hrs per week, exercise (walk, stairmaster and lift weights) every day and then run after a 2 year old in the afternoon, keep the house clean and cook dinner. Any normal person would be tired. I take Zestril 10 mg once a day and Toprol 25 mg twice a day. I have been to the emergency room twice in the past two years for supraventricular tachycardia and have had emergency drugs once (adenosine). Other than that one side effect, things have been going well.

I am a better nurse and person for having had PPCM. I take NOTHING for granted now. When I walk into a grocery store and zip through it, I remember the first day I was able to even drive to the grocery store and walk through the store without being short of breath. I live every day to the fullest and try to live so I have no regrets. I have more empathy for my patients as I know now what it is like to have a life altering health problem