Sarah's PPCM Journey

My name is Sarah  and I was 26 years old and 33 weeks pregnant when I was diagnosed with Peripartum Cardiomyopathy - PPCM. I was flown to Albuquerque from Roswell when I started having chest pains and trouble breathing. Doctors initially believed I had pneumonia due to fluid filled lungs but after an on-call OB arrived and looked further into my tests she determined I needed to be flown out to Albuquerque. There I was diagnosed and we waited until I hit 34 weeks to induce me. February 11th, 2015 my son was born. I stayed in the hospital a few more weeks and then was released back home. Early March I was rushed back to our local hospital and was going into complete heart failure. They flew me back out to Albuquerque where they determined I needed to be sent elsewhere to receive more help than they could offer. That's where Mayo Clinic AZ came in. I was flown to Phoenix and started all my testing with them. On March 13th 2015, yes Friday 13th, I received my LVAD. I recovered from surgery and became strong enough to head home. In June of that year I had a TIA (transient ischemic attack/mini stroke), my device threw a clot, but recovered. It was then we learned about my high antibody count. Because my antibodies were so high, I had a 2% chance of ever finding a match. Doctors no longer felt the LVAD was safe so we started on my journey to lower my antibodies. I went through months and month of numerous treatments with chemo drugs and for a short time my numbers would trend down but then when we thought we were getting somewhere they would shoot back up. Towards the end of 2016 we received news my mother had stage 4 stomach cancer and there was nothing that could be done. So, after that my doctors decided to stop treatments in the hopes of keeping me strong enough and healthy enough to be there for my mom. My last LVAD appointment with my team was in March of 2017. We had started looking at transferring me to UCSD in order to allow me the possibility of being dually listed and open up the donor pool since by then I had been waiting for over two years. My husband finally asked the dreaded question I had not wanted to hear the answer to. "What now? What do we do now?" My doctors said...Pray for a miracle because right now that's what it'll take. I was heartbroken and felt defeated. We have done so much, why wasn’t it working?! 

 
Easter Sunday comes and we are getting ready to head out to celebrate with family and I receive a call from an anonymous number. I wait for voicemail and it’s my coordinator urging me to answer. She calls back and I hear those words. You ready? Cause I think we have a heart for you! After shock and excitement ran through my body we rushed around trying to pack and get a hold of the company that would send me out! I was transplanted on April 17, 2017 after waiting over two years for a new heart! There are some who may not believe and at times I had a hard time. But it was all God. To be told I had a 2% chance and the get my call on Easter Sunday is no coincidence to me!