Mary Roberts PPCM story
I was diagnosed with PPCM(postpartum cardiomyopathy) in November 2 weeks after I had my son Gavin. It was shocking and life changing news. The day before i was diagnosed I had called my Dad to tell him I wasnt feel right and was overwhelmed and asked if he could come stay a few days with me. He worked his route and then drove up afterwards and took off the rest of the week. he was always there when I needed anything. That evening we went out to dinner and then grocery shopping. I took my BP(blood pressure) at walmart and my pulse was 150bpm. I blew it off as just being exhausted. That night we went to the ER and my pulse was still 150bpm. They soon told me i had PPCM. I was shocked! How could a healthy 20 yr old have heart failure? I ended up staying in the hospital for 3 days and they drained 30lbs of fluid off me. My EF(ejection fraction) was at 15%. Most people have an EF of 55-70%. About 3 months later in February my cardiologist said I needed a defibrilator asap. So two weeks later I had my surgery. Little did I know this surgery would almost kill me. My surgery went rough and my heart turned out to be very difficult and they had to move the leads to my heart 5 times before i came out of cardiac arrest. I was also given an antibiotic I was allergic to fully knowing i was allergic to it. It caused my body to break out in hives during surgery. Recovery wasnt easy either because i was told i could not lift my son for at least 2 weeks. I had to rely on friends and family and that was really hard to not be able to take care of my own baby. My cardiologist being the arrogant doctor he was sent me back to doing hair only 2 weeks after surgery, later I would find out from my new cardiologist that I should have not been sent back to work doing hair for 10wks because even if I had not got an infection I would have ripped my leads all out of my heart doing hair. I had a full book with me being gone from maternity leave and then surgery. Sunday I was sore and expected that. Monday came and I was so sick. Migraine, nausea, and fatigue and i had never felt this bad in my life. I contacted my manager and told her the quickest I could see my cardiologist was wednesday and I would have a doc note for her then. They weren't very happy I was missing work again and they were very clear about that. Monday evening my BP was 80/40 and I yet again blew it off as just being sick. Tuesday morning I physically could not move. My aches were worse and so was my sickness. My MIL arived that day since I was still sick and my husband needed to work. Later that evening my husband carried me from bed downstairs to our livingroom. I could not walk on my own. We took my BP and it was even lower. It was deathly low at 66/33. We then rushed me to the ER. That night I was in the ICU ER room as they desperately tried to raise my BP. I was maxed out on meds and my BP had only rose to 80/40. They then decided I needed a central line IV. I was finally moved to an actual ICU room very late that night and then in the morning they decided I needed a pick line. The next afternoon I was moved to CICU and was rushed back off to surgery to have my defibrilator removed. My 1st surgery caused me to have a massive heart and lung infection. The hospital doc said it was the 3rd worse infection he had ever seen. My CICU stay was 4days, plus another 4days in the heart hospital, and then ending in a 8 weeks of IV meds evry 8hrs. Meanwhile all this with a 4mth old baby boy. I was extremely lucky to have such great family support during all of this. Once I was completely healed of my infection I switch cardiologist and it was the best decision I have ever made reguarding my health. My new set of doctors were caring and I wasn't just another chart number. My new cardiologist was shocked to see I was on the lowest dose of my meds. He said before I could have surgery again he must work with my meds first to try and raise my EF. By October my EF had not increased at all and I was yet again scheduled for another defibrilator surgery only this time my surgery would be performed by an Electrophysiologist Cardiologist and not a regular heart surgeon. Surgery went great and I was at peace knowing I had an expert do this surgery and knowing they had paid attention to my antibiotic allergy and had chosen a safe one for me. I recovered great from my surgery and was able to enjoy my sons 1st birthday later that month. Over the next couple months we would discuss heart transplant. My first appointment with the advanced caardiologist was in March of 2011. It was a very bitter sweet appointment because my father was not there with me. We had always gone to our appointments together and had shared the same cardiologist for 6mths. He passed away in February of 2011 of a massive heart attack. He was only 47yrs old. At my first advanced cardiology appointment my Aunt and Grandma met me there for support. I had my first oxygen stress test and another echo. My results of my oxygen stress test showed there was 17/33. Meaning there was only a 45% chance my heart would fail in the year. Not low enough for a transplant. In order for me to need a transplant I would need a 50% or greater chance of my heart failing in a year. A year later I would have a 2nd test done. My results had increased from 17/33 to 24/33. I now have shown my heart is stronger and will not need a transplant. My percent of my heart failing in a year was now only 30%. My EF was up to 25-30%. I would then continue to see my cardiologist and advanced cardiologist every 6months. Recently I have been transfered from my cardiologist I've had for 3yrs to the heart failure clinic. I will go back in February to see both the advanced cardiologist and my new cardiologist who specializes in heart failure. Today my heart remains with a 25-30% EF and I am slowly becoming more active. I currently am back doing hair on the weekends and working at my church 3 days a week as a preschool teacher for the ones class. I may have PPCM but it is not who I am. Its only a small part of my life now. I am continuing to believe for my complete healing is Jesus name. Nothing broken! Nothing missing! Thank you for allowing me to share my PPCM story with you!