In Her Own Words: A 12-Year-Old’s Story of a Failing Heart and Life-Saving Transplant

April 7, 2017 by in category Patient Stories with 0 and 17

By Brienna Love

A photo of Brienna at Primary Children’s Hospital just three days after the completion of her heart transplant

My name is Brienna Love. I am 12 years old and I live in Las Vegas, Nevada. I have two loving parents and a younger brother. Our family loves to take vacations and my story starts after we had just returned from a 22-day vacation driving to Branson, Missouri; Dallas and San Antonio, Texas; and other places. Like most summers, we had an amazing vacation riding roller coasters, swimming in pools and going down water slides! For the first 11 and half years of my life I can’t remember ever getting sick. At least not throwing up for days, maybe a fever or two but that is it.

This all began on July 19, 2016 when I was throwing up everything I would eat and was having diarrhea, too. After a few days of not getting better, on July 22, we went to an urgent care clinic. The doctor prescribed a medication for a flu bug and said it would go away in a day or two. I was feeling a little better, but on July 24, when I had just finished a bowl of mom’s homemade chicken noodle soup, five minutes later, I threw it up.

My dad was at work, so my mom called him and said, “I am taking her to the ER,” which was at the Spring Valley Hospital, just a few minutes from our house. When I arrived, they attached an IV and I was there for a couple hours. They did some testing and found something to do with the stomach. They said because it was not a children’s hospital they couldn’t do further testing. I still had the IV in so I was then transported to Summerlin Hospital by ambulance. At this hospital, they did more testing and found fluid in the lungs. It took a couple days at Summerlin Hospital but one doctor ordered an echocardiogram to check my heart. A young nurse came into the room and did the test in the middle of the night. In the early morning, a new doctor arrived. His name was Dr. Rollins. He is a cardiac specialist for children. He explained that the tests showed my heart was functioning at 20% and things were not good. He said I would need to be transferred to Sunrise Hospital which is the where the cardiac center was for children in Las Vegas. It took almost 24 hours to get another ambulance but the next night we were on the move again.

Once in Sunrise Hospital, things seemed to be getting very serious. It was then that the doctors told me and my parents that there was a chance I would need a heart transplant. Sometimes the heart can recover they said, but they also said that at this point I needed to be in the best hospital in case a transplant was needed. So, Dr. Rollins suggested we go to Salt Lake City, Utah, and we did just that! On July 27, 2016, at 7 p.m. we arrived at Primary Children’s Hospital. It had been my first time ever in a plane and we got there very quick thanks to the Life Flight.

At Primary Children’s Hospital there were a lot of doctors ready to see me. Every day throughout the day staff would come in to talk with my parents and my dad would ask a hundred questions. They put me on a bunch of different medicines through the IV trying to see if my heart would recover. It wasn’t getting better so after a couple weeks they determined I would need a heart transplant. I have never seen my parents so scared and crying so much. During this time, I was getting to meet the transplant team. Dr. Lal was very nice and liked to joke with me. Dr. Molina made me feel comfortable, I would always smile when she walked through the doors. Dr. May I didn’t get to see too much in the beginning but she was so soft spoken and kind.

I was told it could be 6 months or more waiting and that because it would be so long they need to put in a Left Ventricular Assist Device (LVAD). It was time to put the LVAD in. An LVAD is a machine that pumps the blood for your heart when your heart can no longer function fully. I was the first child at Primary Children’s to have this particular type of LVAD placed in me. It is a device that is used on only adults. When I awoke from the LVAD surgery I saw a wire through my stomach. I had Ben, Michael and Laura come by to change bandages on the LVAD. I was so scared but the nurses helped me to understand what it was. It had batteries and a computer in a nice case but it was a bit heavy. I named it Bibble so we didn’t have to refer to it as an LVAD. Ms. Jen from Child Life was so sweet. She brought things in my room and played games when my mom had to pick up my brother from school.

I can’t remember a lot of things during the operation. I was always informed on everything that had happened with me. I guess when I awoke it was two weeks later. The LVAD surgery was a success but the right ventricle was also failing and they had to place an RVAD and keep me asleep during that time. My mom and I practiced sign language to make sure I knew I was OK. They had a tube in my throat and I couldn’t talk for a while. My dad and mom both took shift to watch me. Mom during the day and dad was all night until morning. I didn’t want to be alone. So, a couple weeks went by and I was getting my strength back. My mom had a schedule for me every day. Every morning same time, 9:00 a.m. it was eat, walk and play fun games. Music was my favorite with Spencer. I love to sing and the nurses would take me to see the waterfall and play games with me. I learned to play a game called SkipBo and would beat all the nurses!

Weeks had passed wearing the LVAD and mom and I were talking and I asked her where are we living and when can I go home. Mom said Mrs. Angie the social worker, had set up a place for us to stay at the Ronald McDonald House. Mom said it is really nice and that I would love it in Utah. It was just minutes away from my brother, Jacob’s, school. Mom and I did a lot of talking and tea parties, it was fun. I had the nurses join my tea party, too. Every nurse was so nice and fun. We were told that maybe we could go home to live for six months at the Ronald McDonald House until a heart arrives. I was losing weight and not doing so great, so the transplant team decided that wouldn’t be the case and they moved me up the transplant list. I would be waiting in the hospital until a heart transplant was possible.

On September 6, around 4 p.m., Dr. May came in and wanted to speak with my mom and I looked through the glass door. My mom had the biggest smile. I just knew the heart transplant was going to happen but my mom explained that I had to wait for further testing. The next morning, on Sept. 7, 2016, on my brothers ninth birthday, I would receive a heart transplant. I was so excited for this great news and it was crazy it was happening on my brother’s birthday. I was so ready to be healthy again! I did understand that for this to be happening another family somewhere was losing a loved one. The emotions were crazy but I was positive. I knew all the doctors were amazing and I was going to be fine. I was only scared for my mom and dad, but my dad gave me a pep talk and I was ready to go! Dr. Griffiths was my surgeon and he did amazing. Thank you to the Heart Team! I thank the donor family who I have now learned a little about. I think about my donor every day. He was an adventurous boy and someday I hope to meet his family.

Through all this experience I never cried. I became stronger. In the beginning, I had no idea how to swallow a pill and it was a concern for everyone but with practice and determination I learned in just two weeks. I was able to be discharged from the hospital on September 22 and walk out the front door! I could stay with my family at Ronald McDonald House because we had to stay in Utah for twice-a-week clinic visits. The plan was like when we were waiting for the heart, once again I was told six months of living in Utah for the checkups. Just like the six weeks instead of six months waiting for the heart, I wanted to be home for Christmas and my birthday on January 1. Although the snow in Utah was fun and I even went sledding in November, I really just wanted to go home. I was able to get some school in at Ronald McDonald House thanks to Mrs. Barnett from Wasatch Elementary.

During my time at the Ronald McDonald House they had a lot to do — art, game room and movie nights are fun. Lindsey worked there and always offered us tickets to events so my dad and brother would go. The best part was when she had tickets to the Nutcracker and I was able to go to that with my mom. It was an amazing experience. I loved it so much. I knew Christmas was coming around the corner and I really wanted to go home to Las Vegas. So I asked the doctors to please let me go home. I couldn’t believe it was happening when they said YES! Once again way ahead of schedule, but we packed our things and headed home to Las Vegas on December 18, just in time for Christmas and my birthday. It was so great to be home with all of my family, but I do miss Utah.

I met my friend Maddy in Utah while she was waiting on a heart transplant. She received her new heart in January of 2017. We text almost every day. I thank Primary Children’s Hospital for the excellent care I received and will never forget the nurses and Heart Team because they are part of my family now. The most thanks goes to my donor and his family for the chance of going home to my family who I love so much.

 

Primary Children's Hospital
Primary Children’s Hospital ranks among the best children's hospitals. Located in scenic Utah, everything in our hospital is focused on providing the best care for children. For more than 90 years, we have been committed to helping children, families, and communities across the western United States.

CONTACT US

footerhearty

WE'D LOVE TO HEAR FROM YOU

100 N Mario Capecchi Dr.
Salt Lake City, UT 84113
(801) 662-1000