Sept. 19, 2019 – Today I learned more about the multitalented team that supports patients needing dialysis, liver and kidney transplants, infusions and Synagis injections. As Donna Donoghue, director of ambulatory care redesign and specialty services, described it, this team’s hallmark is “flexibility and collaboration” in their work.
I joined them at a quarterly team meeting, where they had a “Jeopardy”-style game ready for me. We divided into four teams and were challenged to answer questions from four categories: Dr. Frias (I had a distinct advantage in that category!); Infusion/Synagis; Revenue/PD/Transplant; and Hemodialysis/Apheresis.
While the team got to learn some tidbits about me, such as my favorite holiday (Christmas), how many children I have (four) and my favorite food (pizza), I had the opportunity to learn interesting information about them and the work they do. Team 1 had the most “money” at the end of the game, but it turned out we were all winners: Each of us got a custom-made cookie embellished with the team’s passport stamp!
The learning continued during the next part of this visit, when I heard from each specialty within the team. First up was the Infusion Center team. This group of eight has more than 100 years combined experience and works with 14 specialties within the Hospital, from cardiology to nephrology. They serve a steadily increasing number of patients every month, from about 200 a month in 2015 to more than 260 a month in 2018. Keeping patients’ pain and anxiety to a minimum is a priority for this team. For example, they have developed some innovative pain reduction interventions to use when putting in a peripheral IV line, such as using cold spray, lollipops, Healing Touch, and the most recent (and very popular) addition: virtual reality goggles. They are also on the cutting edge of providing new therapies, including a gene therapy drug called Zolgensma, which is used to treat spinal muscular atrophy. At $2.1 million dollars per dose, you can bet the Infusion Center staff feels the pressure when it’s time to administer the drug! Since the first infusion in March 2019, four Rady Children’s patients have received the once-in-a-lifetime dose so far.
Next I learned about the Synagis Clinic, which was started in December 2015. Synagis is an injection that helps protect babies from RSV through virus-fighting antibodies. The clinic has been extremely successful. In FY19, 265 patients were treated and there were zero RSV admissions for the target population.
Then I heard about the hemodialysis experts within the Dialysis Clinic, who treats patients whose kidneys are not functioning normally. In hemodialysis, blood is removed from the body and then filtered through a dialyzer (basically an artificial kidney), after which the filtered blood is returned to the body. Chronic patients have treatments between three and five times per week. It can be a busy place; in FY19, the unit performed 368 acute hemodialysis treatments.
Our Comprehensive Kidney Care Center’s Apheresis Program, which started in 2017, is used to treat certain medical conditions in which part of the blood that contains disease-provoking elements is removed. At Rady Children’s, apheresis is used for erythrocytapheresis (a treatment to remove potentially harmful red blood cells); leukapheresis (a procedure that removes white cells from the blood); and plasmapheresis (a process in which the liquid part of the blood, or plasma, is separated from the blood cells). The team provides both inpatient and outpatient apheresis services, performing a total of 69 procedures in FY19.
The Liver Transplant Program manages the multidisciplinary care of an average of 10 to 15 patients before their transplant and about 50 after their transplant. While Rady Children’s does not currently perform liver transplants, the team is able to admit and manage post-transplant complications including infection, rejection and other postsurgical problems.
The Kidney Transplant Program team performed its first transplant in 2001 and currently transplants about 10 patients per year. They also manage the care of 35 pre-transplant and 75 post-transplant patients. A major goal of this team is to boost living donor transplant rates through increased education and media coverage of altruistic donors. The team provides robust patient support, including an in-clinic psychologist, biofeedback services, support groups and a special camp just for kidney transplant kids.
Finally, the Dialysis Clinic’s peritoneal dialysis team provides treatment for children with end-stage renal disease. This program allows for regular school and recreational attendance and treatment in the comfort of the child’s own home. Sixty percent of this population is under the age of 5, and patients have traveled up to 215 miles to receive care. The average census in 2019 was 12 patients; seven of them were new to the program last year.
This team illustrates the commitment it takes to not only care for kids, but to be invested in their care. Thanks for taking the time to explain the important work you do with such passion and energy. I know our families are in the very best hands!