Expecting Hearts

Kristin's PPCM Journey

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I had a pretty uneventful pregnancy. Some pain: sciatica, Braxton hicks contractions, that kind of thing. But otherwise very healthy. Things with my baby’s father and I went sour very quickly the week I was due with her. The day everything came to a head with him was the day by baby stopped moving. And she never stopped moving.  I felt like I was getting sick so I made an appointment with my primary care doctor to be checked out. I'm notorious for getting bronchitis so I figured it was bronchitis. 


I saw the doctor on April 7th. My due date was April 9th. My blood pressure was very high, my heart rate was high, and I had protein in my urine.  My primary called my OB and told her he was sending me to labor and delivery. He suspected that I was developing HELLP syndrome (a variant or complication to pre-eclampsia). 


My nephew had driven me to the doctor so we went back home to get my mom before heading to the hospital. When we got there, my OB came to see me and she asked me if I wanted to be induced or if I wanted to go ahead and have a c section. Not knowing that things were critical with me, I chose to be induced.  They began induction that night and started Pitocin the next day. 


The next day it was becoming apparent to everyone but me that something was very wrong. I was blacking out with each contraction and my oxygen was dipping into the 80s. I labored for about 12 hours before I got to 9.5cm and by then I was too weak to push. I was taken to the OR to have an emergency c section. My blood pressure dropped to 80/40. My sister was in the OR with me and she said she thought she was losing me. 


Two days later I was diagnosed with PPCM. My EF was 15%. I was handed over to a cardiologist who probably could not care less about me. I was placed on medication but was not on therapeutic doses. I had a very hard time breathing because of the fluid buildup but she blamed it on my anxiety and my chest being too big.  She even went so far as to tell my nephew to "smack me when he saw me breathing funny because nothing was wrong with me". I was in and out of the hospital for the next 4 months with nearly every cardiologist in that practice failing me in some way. 


In early July of 2015, when my baby girl was 3 months old, I was admitted to the hospital again.  I had already been handed over to a cardiologist in the practice who knew how sick I was and was trying to arrange for me to get with the transplant team at another hospital. This was the only cardiologist that had helped me up to this point. My EF had dropped to 7%. 


On July 20th I went into cardiogenic shock. I had been napping with my sister sitting in a chair next to my bed. I woke up and sat up and looked at her and told her I was going to be sick then turned blue. The charge nurse was on the phone with my new cardio and he was screaming for them to get Dobutamine in me.  The nurse was squeezing the bag so it would get into me faster. After I came to, I threw up everywhere and was moved to cardiac ICU. If my sister had not have been there with me to get help, I don't know if I would have survived. The next day I was transported to the University of Alabama at Birmingham Hospital and given over to the advanced heart failure and transplant team. 


The original plan was to keep me on milrinone until they could find me a heart. Then the milrinone stopped working.  Then the plan was to place a balloon pump until transplant. The balloon pump didn't even last 8 hours. They had one of the surgeons stay overnight because they didn't know if I would make it to the next day without an LVAD. 


The next morning before I was wheeled up the OR for a surgery I didn't know if I would make it to out of, I wrote out my wishes for the care of my then almost 4-month-old daughter on a piece of notebook paper. It was August 3rd, 2015. My EF was less than 7%. 


I made it out of surgery. It was a long recovery because I was so weak. But I recovered, I walked my mile, and on August 25th I was released from the hospital. I spent 6 months with the LVAD. It kept me alive but it was hard to live with. I was likely allergic to the driveline and had cellulitis in addition to severe pump pain. 


In February 2015, I went into the hospital fully expecting to be told my heart had gotten worse. To my surprise, I was told that the problems I had been having were because my heart had actually gotten stronger and was pulling blood from the pump. So, they scheduled me for explant. 


On February 23rd 2016, the LVAD was removed. It was kind of hard getting used to not having it but I was thankful I didn't need it anymore. My EF was 45% before explant but dropped to 40% right after.  Something they expected. 


In July 2016 my EF had dropped to 30%. This was not great but I felt pretty good so my team was satisfied. It stayed at 30% until Easter 2017 when my heart had done what they thought would be impossible. It had recovered. My EF was 50-55% and I was elated. I cried. It was a miracle.


August 2017, I began having symptoms so they did an echo. My miracle was gone. My EF was back at 30%. My team couldn't explain it. I was at 30% until January 2018. 


By January 2018, I'm having more symptoms; I'm fighting fluid overload daily, I'm out of breath with very little exertion, and I'm constantly fatigued. My team does another echo and finds that my EF has dropped again.  Its back down to 15%. I have come full circle. It's at this point that they decide to run genetic testing on me to see if they are dealing with something in addition to the PPCM. Testing comes back and it turns out that I have a genetic abnormality. It's called the LDB3 gene variant and it specifically targets cardiac muscle cells and weakens them. 


This gene variant is the reason why I can't recover and why I will ultimately need a heart transplant. For now, I am stable on medication. I will eventually need to go on milrinone then I will be listed for transplant. 


Unfortunately, Kristin passed away in July 2019. We miss her terribly. She was such a bright light, encouragement, and voice of wisdom to all who knew her.  She fought hard!  We honor her memory by spreading awareness!