Heart Stories – Kelsi Crews

Kelsi Crews hadn’t expected to get pregnant at nineteen but she was prepared to take on the responsibility of motherhood. What she hadn’t counted on was a heart failure diagnosis soon after her son’s birth. From lazy summers on the river to a mechanical heart and newborn, Kelsi had to grow up fast and fight for her life. Here is Kelsi’s story.

My entire life upended when I was nineteen years old. Prior to getting sick, I was healthy and enjoyed living a pretty normal life. I had the freedom to go and do as I wanted without a worry in the world. I just went with the flow and that is how I liked it.

Growing up in South Georgia, my happy place was summers on the river and mud bogging with friends. I was constantly going and never stayed in one place for long. My life was perfect but then came an unexpected surprise.

In 2018 I found out the most shocking yet amazing news of my life – I was pregnant. The baby’s due date was December 28, 2018.

Although I was excited to be a mom, my pregnancy was not a good experience. From the beginning, I was sick and miserable. I hated being pregnant and was so ready for it to be over. Despite me not feeling great, my son looked great at all of my appointments. He grew just as he should and had a perfect heartbeat.

Four days before my due date, on Christmas Day, I woke up with back labor. Terrified, I refused to go to the hospital. This would be the day I would have my son and become a mom. I was excited but the whole experience was nerve-racking and so scary. My son was also breech which only added to my concerns since I knew I would be having a C-section.

By the time I got to the hospital, things moved pretty quickly. Once in my room and hooked up to a machine, they monitored me for an hour. Once the hour was up, the doctor came to the room, checked me out, and said it was time to head to the OR. Hearing his words made my heart drop. My mind couldn’t process what to feel or think at that moment. I had to go with the flow.

Soon after the doctor left, the nurses came into the room and prepped me for the surgery. Everything is a blur from when we rolled into the operating room up until I heard my son’s first cry. When he was brought to me and I could see his tiny face, all of the pain and discomfort I had experienced during the pregnancy was totally worth it. This was the best day of my life and forever will be.

Recovery after the C-section was hard. I had lost too much blood during the procedure and had to get a blood transfusion. There was something else wrong but my medical team could not figure out what the problem was. After a week I was discharged from the hospital. Once at home, I constantly felt tired and weak. I had no energy and was barely able to get up each day let alone take care of my newborn. I told my doctor how I was feeling but my concerns were dismissed. They told me I was fine. They were my doctors, I thought they should obviously know more than me so I believed them.

Everything came crashing down in February 2019. All of a sudden I was extremely dizzy and I couldn’t catch my breath. The shortness of breath made me feel like I was drowning. I went to my local hospital and they still could not figure out what was wrong with me. It was not until four days later that they realized that I was in heart failure.

My local hospital couldn’t handle my case so they sent me to Jacksonville, FL, and placed me on ECMO. This machine saved my life for the time being but not even this hospital could deal with the complexities of my health. The hospital urgently started calling bigger, more specialized hospitals to see if they would accept my case.

After many calls, Emory University out of Atlanta agreed to bring me into their care. Here I received the official peripartum cardiomyopathy (PPCM) diagnosis. On February 19, 2019, Dr. Attia put in an LVAD to help my heart and bridge me to a transplant.

Given my condition, Emory put me in a medically induced coma where I stayed for almost two months. During this time they unsuccessfully tried to wake me. Since they couldn’t wake me up, they had to place a trach which is something that they had been hoping not to have to do. My head was also shaved while I was under due to the tangled mess my hair had become while laying on my back for weeks.

I finally woke up in April to many shocking revelations. With my family by my side, I learned about what had been happening while I had been sleeping. The multiple times I almost died. About the mechanical pump connected to my heart. How this journey was nowhere close to being over and more surgery loomed in the future.

This was a lot of information to take in at one time and the news sent me reeling. I was so upset and agitated. The tiniest things would aggravate me. It was difficult to control my emotions when I had already lost control of my body. I just wanted my baby. I wanted to go home and hold him, be with him. Anything but be locked up in the hospital where bad news seemed to keep popping up around every corner.

Over the next year and seven months, I lived my life on the LVAD. Life on the LVAD was a big adjustment and I was also a new mother. It was a hard time in my life but I pulled through with help from my support system.

On July 13, 2020, I finally received the call I had been desperately waiting for – they had a heart for me! There were so many emotions I felt on the way to the hospital. It was almost like when I had given birth to my son. Excitement to finally get rid of the LVAD and get a healthy heart but also fear stepping into another major surgery.

Since we were still in the middle of the COVID-19 pandemic, I had to go through the heart transplant completely by myself with no visitors. Being only 20 years old and having to go through all of this alone was really tough. I didn’t have an easy run of it at the start having dealt with a lot of rejection. Luckily, my team was able to adjust my medication and I have been doing pretty well ever since.

Kelsi is a supporter of the PPCMFund.

***Update: While working with Kelsi on her Heart Story, her health rapidly declined. Following a change to her immunosuppressive medication, Kelsi’s heart went into rejection and her body is taking on a lot of fluid. She is currently back at Emory University where her team is administering strong steroids to help the rejection and diuretics to remove the fluid.

If you are able, please consider donating to Kelsi’s GoFundMe fundraiser to help her with medical bills and expenses for her two-year-old son.

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