Jackie's story: Transitioning to adult care

Image courtesy of Jacqueline Benavides

If you’re a teenage patient approaching transition from a pediatric to adult health care provider, the process itself can definitely seem intimidating. It’s not as scary as it might look, though. There are no rules when it comes to transitioning. If you’re nervous about going to your first appointment with an adult provider, then don’t go alone. Take your caregiver, a family member or a trusted friend. This process is about gaining more independence and taking control of your health, but doesn’t mean you can’t have a support system with you through it all. So, take it easy. Transition at your own pace, and don’t be afraid to ask for help along the way.

My medical journey started at 16 when I noticed my ankles were swollen on my birthday. This prompted a doctor’s visit, which led to several blood tests and ultimately a kidney biopsy. I was living in Beaumont at the time, an hour east of Houston, but my physician wasn’t comfortable seeing a pediatric patient. This led me to Texas Children’s Hospital.

I was a patient with Texas Children’s for four years, and I was definitely spoiled by all of the love and attention I was given while going through treatment.

Once I was there, Dr. Sarah Swartz became my pediatric nephrologist. She diagnosed me with a chronic kidney disease called focal segmental glomerulosclerosis (FSGS). By this time, four months had already passed since I noticed my swollen ankles. When another two months passed, my kidneys became too damaged to function. My combined kidney function was at 11 percent, and I had to choose between peritoneal dialysis (using dextrose fluid to remove bodily toxins) and hemodialysis (removing toxins directly from the blood). Our distance from the hospital helped me in making my decision.

When August rolled around, six months following my birthday, I underwent my first surgery to get a catheter placed in my abdomen for peritoneal dialysis. A week after the surgery, I suffered multiple seizures in one day, which landed me in the hospital for 20 days. I started dialysis while I was in the hospital, and eventually went home with a dialysis machine I called Big Bertha and a dialysis catheter I affectionately named Timothy.

I didn’t face any complications until March of the next year when I had a rip in my peritoneum requiring exploratory surgery to repair. By July, my disease had been inactive for a year, so we started exploring kidney transplant options. My mom was tested and was a match, but a tiny kidney stone made her ineligible to donate. My brother was tested and was a perfect match, so we scheduled the surgery. Just five days short of my two-year dialysis anniversary, I received my brother’s 5-pound kidney. I’ve had my brother’s kidney for almost six years and counting.

Dr. Swartz started discussing my transition to an adult nephrologist pretty early on. I initially thought I was going to get kicked out when I turned 18, but I wasn’t in a stable condition at the time. Dr. Swartz told me she would take care of me until she felt comfortable letting go. Once I had my transplant, things started looking better. One of my post-transplant biopsies showed some signs of rejection, but my medication was increased and my medical team didn’t seem worried.

As transition neared, I felt prepared from past conversations with Dr. Swartz. She was seeing me once every two or three months, and would discuss the topic during every appointment. When it came time to transition, our preparation became more emotional. Thankfully, my social worker helped me by finding physicians in the area who accepted my insurance. She advised me to use Healthgrades to find patient reviews, and made sure I understood how health insurance worked. If I could give a valuable piece of advice to a transitioning patient at Texas Children’s, it would be to stay in touch with their social worker. When you get stuck and feel lost in the health care system, they’re always a great resource to have.

I didn’t realize this at the time, but Dr. Swartz was almost grooming me to become the “perfect patient,” which definitely made my transition much easier. She always made sure I knew my medications by name, dosage and schedule. She made sure I could read my lab work to know when levels were elevated or dropped, and guided me on how to balance them. She made sure I knew which symptoms matched with certain ailments. For instance, if my nails were breaking easily or my skin was bruising easily, I knew I was likely becoming anemic and had low iron levels. She made sure I was always in tune with my body. If a new mole or mark popped up, I would know about it. If my blood pressure was high, I would be able to feel it. She helped me make sure I could not only identify these things, but also effectively communicate them to her. By the time I transitioned, I was practically an expert on my body, able to relay all of my symptoms to other physicians comfortably and confidently.

Today, I have been seeing an adult nephrologist for almost four years, and I feel just as comfortable with her as I did with Dr. Swartz at Texas Children’s. I trust my physician, and I feel confident in her care.

Even though I’ve transitioned smoothly since leaving Texas Children’s, I still dreaded leaving this hospital. If you’re connected to Texas Children’s, you understand how easy it is to become attached. You grow to love your physician, your nurses, your social worker, your dietitian, your phlebotomist … the list goes on. You grow to look forward to visiting Radio Lollipop or the hair salon, and you long for the activity cart brought around to each hospital room.

There are things you become accustomed to and feel should be in every hospital setting, but the reality of it all is the only thing you’re losing when you transition is the entertainment – or better yet – the distractions. You won’t have a child life specialist holding your hand during a shot, and you won’t have glitter personally delivered to your hospital bed to lift your spirits. But, you will find a team of physicians, nurses and other dedicated health professionals who will care for you and put your health first.

Transitioning from a pediatric to adult health care provider shouldn’t cause anxiety. It’s a sign you’re getting older and maturing along the way. For me, it signaled stability and improvement in my health. Dr. Swartz believed I was ready for the real world and able to handle anything coming my way. It’s scary at first, as are most big changes, but it will get easier. You will find yourself comfortable in these next steps, even if your clinic isn’t painted in bright colors.

If you’re interested in reading or keeping up with my medical journey, feel free to visit my personal blog, Chronically Jackie. For a wide variety of family resources regarding the transition process, click here.