“Tears of joy” are the words Jennifer Allison uses to describe the day she and her family received news that her 19-year-old son Jimmy Daniel (JD) would receive his long-awaited liver transplant, while he lay in a hospital bed in Tampa General Hospital.
Don and Jennifer Allison were Tampa residents when their two children, Courtenay and Jimmy Daniel, were born. Since Courtenay was diagnosed in childhood with asthma, the Allisons were praying for a healthy son. But when JD was born, he was immediately diagnosed with meconium ileus, a bowel obstruction that required surgery that same day. After a very long and fretful night, the Allisons finally got to hold and comfort their newborn son. The doctors warned that JD’s obstruction was an indication of Cystic Fibrosis (CF), and they would need to follow up in a few weeks to have him checked. JD stayed in the hospital for an additional ten days while the doctors monitored the newborn’s progress to ensure he was healthy enough to go home.
INSET: About 18 percent of CF patients are affected by meconium ileus (MI), an obstruction of the bowel caused by thick, abnormal meconium. MI is suspected if a baby fails to pass meconium shortly after birth and develops symptoms of bowel obstruction, such as distention of the abdomen or vomiting. MI must be treated immediately to prevent these complications and protect the baby’s bowel. All babies with meconium ileus should be tested for CF because 98 percent of full term babies with MI have CF. –Johns Hopkins CF Center.
A few weeks later Jennifer took JD for a sweat test to find out if he had CF. The doctor confirmed that JD had lost 17” of his lower intestine when he was born, and the test conclusively established that he had CF, a devastating blow for the family. Jennifer speaks tearfully about those first few months when every book she read held increasingly distressing news, including the fact that most males with CF cannot have children.
For the first year and a half, the Allisons couldn’t drive by a baseball field without wondering if their son would ever be able to play. Their hopes and dreams changed radically during that time, as they came to grips with what the future might hold for JD. Fortunately, Pam King, a respiratory therapist, took the family under her wing, walking them through all of the milestones they could expect, and factors they should look for. Since CF is a lung disease, most patients usually die from lung failure, although every organ is affected. The Allisons held onto the hope that JD might be different, because the one thing he had going for him is that his lungs were healthier than most kids with CF.
When Courtenay was eight-years-old and JD was four, the family moved to Colorado Springs. The clean mountain air and low humidity was a welcome respite from the heat and humidity of Florida, giving JD a healthier environment in which to grow and thrive. Since he is allergic to mold, conditions in Florida are not conducive to a healthy existence for CF patients.
The years passed and JD seemed to be managing his CF, according to the doctors who performed his yearly checkups. He had been diagnosed with cirrhosis of the liver which resulted in esophagus issues, and was put on a lengthy wait list for a liver transplant. Jennifer homeschooled the children, which kept JD away from all the usual illnesses that affect school children. In January 2014, JD graduated with his high school diploma and began taking college courses. He had been bowling for years, and has developed into a very good bowler, with an average score of 200. His longtime friend Zack, who also has health issues, was drawn into the world of bowling and together they dreamed of becoming professional bowlers.
JD’s grandparents still live in the Tampa Bay area (Land ‘O Lakes), and JD decided to come for a summer vacation in Tampa before his next semester began. But just as he was making preparations for his journey, he was admitted to the University of Colorado Hospital for a gastrointestinal bleed. Determined to make his trip to Tampa, JD was released after a few days, and his trip plans continued. Upon arriving in Tampa, JD did all the usual tourist activities like visiting Busch Gardens. But on the day he planned to go to the beach, he began vomiting blood. His grandparents called 911, and the ambulance took him to Florida Hospital Wesley Chapel. The diagnosis was dire; he was bleeding internally, and required an airlift to Tampa General Hospital (TGH). Once there, he underwent emergency surgery for a liver bypass, and was placed on the liver transplant list in Florida. His parents Don & Jennifer flew into Tampa to be with their hospitalized son, and were relieved to find a room at the nearby Ronald McDonald House (RMH). While one parent stayed bedside with JD, the other would find rest and respite at the nearby House. Jimmy and Linda Allison came every day from their home in Land ‘O Lakes to see their grandson and comfort the distraught parents. Sister Courtney flew in from North Dakota, while friend Zack travelled from Indianapolis to see his old friend. JD’s test results had moved him into the number one spot for a liver transplant, and as each day passed, the family hoped that today would be the day they would hear good news that a liver had become available. By now, JD was very sick, living day to day with the hope that a new liver would give him a new lease on life.
Like all of our families who stay at Ronald McDonald House, the stress and worry of having a sick family member in the hospital is overwhelming. Courtenay was declined for family leave from her job, and worried that she might not have one when she returned to North Dakota. Zack had taken leave from his job, but was finding a way to work remotely, as was Jennifer for her job at her local church. The family found it difficult to get around with no transportation, and was incredibly thankful when four members of their church drove the family car out from Denver. Having such a supportive environment has been a great blessing to this family, and they count RMH as one of these blessings.
Jennifer was the first to get the news that a liver had become available. The nurses and doctors couldn’t hold back their smiles as they told the family that a liver was in transit to save JD. ““Tears of joy” is the best way to describe how we felt when we heard this news. As a family, we cried and hugged, giving thanks that JD now had a chance to live.” JD was immediately taken into surgery for a liver transplant, while the family spent anxious hours awaiting the outcome. After surgery JD was put on a ventilator, feeding tube and central line, but thankfully this was only temporary. By the second day after surgery, he was up and walking in the hospital corridors.
RMH has been a home-away-from-home for Courtney, Zack, and either Don or Jennifer. They all share one room, and have become closer than ever. They have tried to stay at Denver’s Ronald McDonald House when JD needed prior hospitalization. But that house is usually full, and the family endured many hours on the road to visit JD. They are amazed at RMH Tampa, where they have been welcomed with open arms. Grandparents Jimmy and Linda had never seen the inside of RMH before, and they too are astonished by the incredible services offered to families. The words they use echo so many of our families: lifesaver for families, a Godsend, and a blessing.
As JD recuperates from his transplant, several months of rehabilitation lie ahead, and he will stay at RMH. His sense of humor and optimistic outlook inspire those around him and help them through this transition period. The family’s greatest hope is that they can all be together for Christmas this year, and we hope they can make that a reality.
Footnote: As the age of survival for patients with CF continues to improve, the diagnosis and treatment of CF liver disease (CFLD) has become a very relevant clinical issue. CF liver disease is the third most frequent cause of death in CF after respiratory and transplantation complications and accounts for 2.3% of all mortality. Liver disease is the initial diagnostic finding in only 1.5% of patients.