Most of Samuel’s life he felt active and healthy. He enjoyed participating in martial arts and several other sports. In 2018, when things seemed off, he didn’t suspect it was anything more than a cold.
At that time, he was a lifeguard at his local YMCA and he was very involved with his community. When he started to feel ill, he thought it would go away if he got some water and rested a little. After a few days, he felt like he was getting better and was relieved. The following Saturday he lifeguarded for a long shift and started to feel ill again. On Sunday, it was so bad that he could not go to church, which was hard because it was something he loved doing. When this bout of illness seemed so much worse than the first one, he suspected this was not the average cold.
On February 7th he woke up to a startling surprise. The left side of his face was drooping, and his speech was slurred. He could not move the left side of his body at all. The experience was very surreal. He states that it felt like what people explain sleep paralysis to be. When his mother saw what was happening, she knew something was terribly wrong and called 911. His mom ended up driving him to the nearest hospital. When he got to the hospital, they ran 2 CAT** Scans and they told him he was having a stroke. He could not believe this was happening to him at such a young age and being in good physical shape. They administered a drug called tPA** that was supposed to loosen up a blood clot. Apparently, a blood clot had formed in the bottom left chamber of his heart and then traveled to his brain causing the stroke.
At this point, his physicians decided to transport him to Methodist University to perform an embolectomy, which is when they went through his arm to his brain to suction out the blood clot. When he woke, he was able to move his left side again and he felt a great relief. The doctors then explained that they looked a little further into his situation, being that having a stroke at 16 is rare, and they found that he had a serious heart condition. They then sent him to Le Bonheur Hospital in Memphis, Tennessee because they were better equipped to handle Sam’s heart condition. When he got to Le Bonheur, he was immediately moved to the CVICU (Cardiovascular Intensive Care Unit), the cardiologists explained to him that he had cardiomyopathy (enlarged heart). Cardiomyopathy is a disease of the heart muscle leading to decreased function. It was pumping so inefficiently that fluid was starting to build up in his lungs. They suspect the cardiomyopathy in place since birth and built over a lifetime to cause the stroke.
Samuel had run with his father for years in many 5k’s and was a competitive swimmer. To think he had a heart condition this whole time was almost unbelievable. In retrospect, whenever he felt tired, he believed it was because of a lack of conditioning, but it was actually his heart condition the entire time.
The prognosis given was the best case scenario he would be on medications for the rest of his life. Worst case scenario he would have to have a heart transplant. Both he and his mother were terrified. Sam remembered they thought a heart transplant sounded extreme at the time.
Two days later, things went from bad to worse. His short-term memory was beginning to fail, and his mother and staff would have to tell him information repeatedly. His heart rate was increasingly going up and he was constantly nauseous. When his heart rate reached a max of 238 BPM (beats per minute) he was shocked with the defibrillator three times to help reset his heart. He remembers being shocked the third time and jolting forward with a vision of a room full of doctors. One doctor was desperately asking him to wake up on the final shock. He remembers after this the whole room getting darker and darker and then going back to sleep, but after this his heart had actually stopped. At this point, he was placed on an emergency bypass called ECMO (extracorporeal membrane oxygenation) to get his heart and lungs to work again. It took two days to stabilize him. When stabilized, his medical team was able to put an LVAD (Left Ventricular Assist Device) in to help assist his heart pump normally again, but without the potential danger of the bypass machine. He was not conscious on ECMO, but once on LVAD was conscious again. His physicians advised at this point the best treatment being a heart transplant and that this LVAD would help bridge him to heart transplant.
Another potential factor to his wait for a new heart was the fact that he is type O blood, which means that he could give blood or potentially a heart to anybody else through HLA (human leukocyte antigen) mismatched transplant, but he can only receive another type O blood or heart. He was ineligible for cross-matching. For this reason, it would take much longer to receive a heart. This was frightening because his condition was continuing to decrease on LVAD. He remembers it being worse than when he had a stroke. He was afraid he would not make it 6 weeks or longer for the type O heart he so desperately needed.
Life was mostly a blur while waiting for a heart. He remembers the fanny pack with controls on it. The transplant team taught him how to control this unit because some people manage to walk around the hospital and even wait at home on an LVAD. Because there is no heartbeat with an LVAD, when he listened through a stethoscope, it sounded like a mechanical whirring. He remembers it being a difficult time for him because of poor circulation which caused nausea and very cold hands and feet. As the days went on, these side effects continued to get worse. At points, he was actually looking forward to the heart transplant.
He has two brothers and one sister and lives with both parents. His mother stayed with him in the hospital most of the time. Only one parent could stay with him in the CVICU at a time. He was so sad that he could not be with his entire family. They were all very close and supportive of each other growing up. They were a tight-knit family that his mother homeschooled herself. Samuel cannot imagine living through something like heart failure and transplant without the incredible support of this family. He was especially sad for his mother, who is a very compassionate person. She often wished that it were her instead of him sitting in the hospital and going through procedures. He felt that through the transplant process he grew much closer to his father. He spent lots of time talking to and hearing stories he had never heard before. This is a connection he still very much values.
He came from a very strong church community. When he needed help, his mom went to church and asked her congregation to pray for her son. There were many who shared the story and had a strong faith that Samuel would make it and prayed. Thankfully, he didn’t have to wait long. February 16, 2018 he got the call and received his gift of life.
After his transplant, he said it felt like waking from a coma. He remembers waking to a breathing tube and was coughing quite a bit. His doctor was then able to pull out the breathing tube so that he could cough productively again. So much time had passed and he was ready to get back to life again.
Some of his favorite moment’s inpatient was with his physical therapist. Most people who need physical therapy in the hospital are just trying to walk, talk, and eat again, which is exactly where he was at. His therapists knew he was an athlete and wanted to get him back to that condition again. Which they did eventually accomplish. His most exciting moment post-transplant was in September when he ran a 5k with his OT and PT and their spouses and kids. He ran 3 5ks in the first-year post-transplant Samuel still runs today and competes in 5k’s.
The best thing about transplant is all the doctors, nurses, therapists, and other people he has met through this process. He also appreciates that he got to meet other people going through the same thing condition as he has. The worst thing is being on the waiting list and not knowing if the heart is coming or not.
His proudest achievement is going to college. After being homeschooled his entire school career he was unsure if he could do it. But after getting his heart, he felt a renewed sense of purpose and decided to take his ACTs and did very well. He then applied and was accepted into the University of Memphis. His focus is to go to law school, and he is starting with his philosophy degree. He picked philosophy because he is amazing by various viewpoints, likes to think about situations from all angles and he likes to debate.
Samuel’s best piece of advice for those waiting
Get a support group and lean on your family to help you during this very difficult time. Never hide how you are feeling. Find as many people to talk to as you can to help you feel even a little bit normal. If you are by yourself and in your own head too much, you might just focus on the worst-case scenarios. A support group that will stay with you and fight with you the whole way is very important.
Thank you, Samuel, for being an incredible inspiration to so many!!
To read more about Samuel on Le Bonheur Children’s Hospital site, visit: https://www.lebonheur.org/publications/securing-the-promise/heart-of-a-champion/from-heart-transplant-to-5k/
If you would like to share your story of hope, or what like to nominate someone, please contact us at firstname.lastname@example.org or use our submission form to enter name and contact information. Thank you for giving other transplant families hope.
**Tissue plasminogen activator: (tPA) An enzyme that helps dissolve clots. tPA is made by the cells lining blood vessels and has also been made in the laboratory. It is systemic thrombolytic (clot-busting) agent and is used in the treatment of heart attack and stroke.
**Computerized axial tomography scan. CAT scanning is a painless X-ray test in which a computer generates cross-section views of a patient's anatomy. It can identify normal and abnormal structures, and it can be used to guide procedures. Contrast material is sometimes used in CAT scanning.