In 1983 my sister was fatally injured in a car accident. I was pregnant, 7 1/2 months at the time and was absolutely grief stricken when she passed away after a month in a coma on life support. My daughter was born in Nov 83, and the following year, my chest literally "ached"...I thought from grief. When my daughter was 14 months old, I came down with pneumonia, didn't take care of myself and was sick for almost six weeks. When the pneumonia cleared up I noticed I was short of breath and told my physician. He stated that he thought I had developed "allergic asthma" as a result of the pneumonia and put me on allergy shots. 7 months later my gynecologist ordered blood tests for an unrelated problem and called me to say I had a heart problem, liver cancer or bone marrow cancer!! He order the later two scans which were both negative. At the time I was working in "managed care" and thought he was making things up as I felt "fine" and was only 32...how could I have a heart problem???
Within a year, I had gained weight, was so weak I could barely walk and would wake at night with my heart beating as if I had run six miles. I was experiencing high anxiety (70% of dilated cardiomyopathy patients develop a panic disorder as the body sends adrenaline to try and get the heart to function more effectively). I began seeking care and was told it was stress, despite my BP being 120 over 110.My family practice doctor treated me like I was a hypochondriac, my marriage was falling apart as I continued to too, and I had no energy. I had gained about a pound a month, not moving for over two years!
When my doctor prescribed Xanex for anxiety, I knew it was addicting and basically came home and cried out of frustration. I opened the yellow pages and called the first female psychiatrist listed, explained my symptoms and she referred me to an internist (WE are completely controlled by HMO's here and they were really lousy then in referrals to specialists). The internist was on the Stanford Univ research for cardiomyopathy and diagnosed me after an echo showed my heart function at 32%. Under 30% and I would have had permanent damage and needed a transplant. My heart was holding three times the blood, enlarged three times normal. I was told I would probably die within 5 years, 33 1/3% passed away in two after a slight improvement under ace inhibitors, 33 1/3% after five years, and 33 1/3% survived longer. Remember, this is 1988 and things have come a long way now as the ace inhibitors were only on the market two years then!
In six months my heart function (ejection fraction) returned to normal however, my heart still had to compensate by extending out to get a strong enough contraction...I was told it was like a over stretched rubber band, that it would eventually wear out....Not to expect to live past 55. At the time, my daughter was now five, my son 12...I just wanted to survive long enough for them to grow up. I had total anxiety, took Buspar 10 mg 4 times a day, Lanoxin, Veraprimil, Vasotec. I literally recited affirmations, no fewer than ten an hour "I am happy, healthy and calm" every day for two plus years.....I almost separated my conscious thought from the craziness in my body to continue to work and care for my family. At two years, May of 1990, I was told that my heart was not compensating anymore! Since that time, my heart function was at the low end of normal, but holding steady. This past year I have been exercising regularly and my ejection improved 20% although my atrium is slightly enlarged. I see my cardiologist on Wed for my annual follow up.
Although I was never diagnosed with peripartum, I was told I had "Idiopathic Dilated Cardiomyopathy", I know I had problems after my daughter and before the pneumonia. I hear that peripartum is very different though so I would encourage others to speak to their physician.
What have I learned? I only see female doctors now as I know how important it is to have a doctor who listens and respects women. I appreciate life in a way that I never ever would have otherwise, and I know that the body can heal from being VERY sick to being healthy....I know what it feels like to be 90 and I feel better now at 47 than I did at 32.My love and support to all of you...if I can help, please let me know.