Only a few days ago I found out I am pregnant with my fifth - I have three live children and had one miscarriage in 2009. My last live birth was 2006. It was this one in which I was diagnosed with cardiomyopathy. Here are the stats from my births:
March 9, 2001 - healthy, born on due date, vaginal with no tears, episiotomy, or medication at all. I was 22
December 17, 2003 - healthy, 2 days overdue, vaginal water birth at home - no tears or episiotomy, obviously no medication. During pregnancy I did develop palpitaions and was tired, but midewives said this was normal. A few days after the birth I was reaching over my head to hang lights and my eyes saw double - I thought I was having a stroke. it lasted about 5 minutes and I really thought I was dying. At the hospital they only did a blood pressure test to see if my BP dropped when I stood and they sent me home right away with the diagnosis of dehydration. I began have more palpitations and even got my first EKG in which the PCP told me I had an arrythmia (wrong - it was an extra beat) but offered nothing else, so I left it all alone
March 1, 2006 - healthy, born on due date, vaginal without tears or episiotomy, EF around 45%
February 2009 - miscarried around 12 weeks
So this really may have begun with the second pregnancy, but since I was only seeing a homebirth midwife, and I seemed to get along fine, excpet for the strange double vision episode and the onset of palpitations, I may have slipped through the cracks of recognition. I was also in school for emergency medicine until the end of the 2nd pregnancy and I remember the class learning to take pulses. Mine was 120 - when my peers were surprised I told them this was always normal for me. I remembered having a pulse of 100-120 when I was a teenager checking it at Wal-mart. So maybe I have just lived with this? I've never been athletic because I get tired, always had low BP and high HR. . .
So back to the official diagnosis of cardiomyopathy in 2005 - I was at work an an EMT, ironically enough driving a patient to a dialysis appointment in the ambulance, when I began having an episode of tachycardia and shortness of breath. I told my partner we were making a stop at the nearest hospital - that I also had chest pains. He made me pull over and drove me, much to the surprise of our own patient! I was ordered an X-ray but never got one somehow, and sent home with a referral to a heart hospital that took uninsured residents (I had no insurance). I got in the next week and they began a stress test, but my resting HR was so high they could only do the resting echo. In a week or so I went back to discuss the results and I was told my heart was functioning lower then normal, but don't worry - take this pill and you'll have to take it all your life. EF was 40%. Nothing was explained. The term Cardiomyopathy wasn't even on the table. That was that. I was so confused and scared. I'd never had any health issues besides hypochondria, which never had materialized anything before!
The attacks of tachycardia persisted out of nowhere and I was in and out of the ER with no answers. Finally I realized I was late for my period and went to the health clinic for a test and it was positive! That put me at ease and I thought, "oh, that's why I have all these weird things happening - I'm just pregnant and it's the hormones!" I went back to the heart hospital and thy kept me on toporol, but I was also told by a number of nurses (!) and doctors that the outlook was grim. I was offered termination for the first 5 months. I cried and prayed everyday. My husband was not supportive, or even present. We were living with his parents 600 miles from my friends and family and I was nursing my one year old AND working in an ambulance, lifting stretchers. I was told I needed to wean him and it was extremely emotional and difficult - he was NOT ready to wean. I got temporary disability and tried to take care of myself the best I could without much support. My in-laws had their own health issues, and could not see either the help I needed nor the severity of the situation. My family and friends were never supportive of my marriage (with reason - it ended after this pregnancy), and were far, far away. I saw a naturopathic doctor and spent all my little money on supplements. My next echo was 54%. I can't remember having anymore echos for the rest of my pregnancy. At 5 months pregnant, my mom moved us down to Tennessee where she lives to help us out. My husband never got a job and we were in a tiny house, very isolated. He knew no one. A very dear friend of mine was a resident at UT hospital in Knoxville, and she somehow worked me in as her patient, although it was 2 hours away and I also saw a high risk dr there. The cardiologists there seemed ok with everything, and Molly was fantasic and putting me at ease consitantly. I developed severe gestational diabetes and was injecting three times a day on top of a very limited and stressful diet that left me hungry all the time. I had weekly ultrasounds because of the diabetes and the CM. They kept changing the diagnosis from PCCM to idiopathic. I didn't much care because the outcomes seem the same and we don't know what causes it in the first place.
I was told I would need a c-section or at the very least, an early epidural. I was told I may wind up in ICU, I may die, the baby may die, they would need to induce early. . .everything opposite of my last home-birth. I ended up showing up the evening before his due date, at 6cm dialated. Labor was slow mainly because I was scared something was going to happen suddenly even though I felt ok. I gave birth naturally right before 7 am with one push! My EF was somewhere between 45-50 I think.
My diabetes went away within a day. I was sent home without any fuss, as if I was never high risk in the first place. Throughout the next 2 years I went through a traumatic and violent separation and divorce, extreme poverty (running out of diapers and having the lights turned off, no heat. . .), and not surprisingly my EF dipped down to 30% at one point. The doctors once again made no big fuss over this since I was walking around and caring for three small children alone and with little to no resources at times - for 9 months I was without a car in rural Tennessee! But I continued what I could as far as supplements and I did have a couple of amazing friends who helped out. After I got stable again I took acupuncture 2 hours away once a week for a few months and brought the 30% up to 54% WITHOUT meds. The doctors were happy with the echo of 54% and said, "see, the meds work great!" (this was after I told them the toporol just made me tired and depressed and brought my BP too low). I pretty much pissed them off by replying, "I never took the meds - I've been doing herbs and acupuncture!" Well, I never went back on them, and I'm ashamed to say that depression eventually caught up to me and I repressed many things about the pregnancy and my failed marriage and fell into years of heavy drinking and smoking cigarettes. I would get chest pain but I didn't care. I still managed. I knew I was killing myself but something down deep didn't care. I would go through phases and quit for a few months but pick it up again. I was raising a family completely by myself and trying to figure out how to do it. I didn't get child support for 4 years and my ex-husband moved 600 miles away when our CM baby was 2 months.
I have been with my partner for just a year and a half now, but this motivated me enough to quit the self-abuse cycle and begin raising my kidsa again with the passion I had when I first became a mother. I know because of years of abuse, my heart is nowhere near where it should be. I had my first echo in years in January, and it was 45%. The new dr said it's a low normal, and prescribed ramipril, which I never started because I though, well, I want to give my body time to recoop after quitting the bad stuff. . .and I was afraid of the depression and low BP again. I filled the script and told myself I should probably start it but never did. 9 months later I get the test back - a real surprise and miracle, considering we are pretty darn careful, and this just made it more obvious this was meant to be. I am hopeful and faithful that this was no mistake or I need termination. I want to trust doctors and I know they give us the information they have based on statistics, but there is no 100% rate of death. Someone has to be the other 50% or even 20 or 30%. I know I will be. This will probably be my last pregnancy though because frankly, I am scared, and it's freightening and a test of your spirit to have well educated and experienced doctors look you in the eye and tell you that you may very well die. But like I said, my faith is great, and I do beleive I've been blessed with strength that is unique.
God bless all you Heart Sisters, and thank you for reading my story.
My Details
- Date Diagnosed: 01/09/2014
- Child: 3
- Initial EF: 40%
- Current EF: 45%
Story By Sabrina Zimmer