Saturday, March 31, 2007

Growing Up With A Transplant

Transplants in children make up a small but significant number of organ transplants. Even though they represent only about 8% of transplants, their differences generate a lot of attention. The conditions causing the need for transplant in children are different, mostly congenital diseases. End-stage organ disease can not only threaten the lives of children but also impair their development, so different criteria for children are built into organ allocation systems, and often a higher priority. Finally, many of the "best" stories and the most positive public images of transplantation come from the times when a successful organ transplant is performed in a child. Even better, more and more children are growing up with transplants and becoming adults. This process is great overall, even a miracle, but comes with unique pitfalls as well.

The overall experience of growing up with a transplant was discussed at the American Society of Transplant Surgeons (ASTS) 6th Annual Winter Symposium in a talk by Dr. John Magee, and summarized the experience perfectly with the title "Growing Up Is Hard To Do." Dr. Magee's research shows that regardless of the age at transplant (infancy to adolescence) there is a substantial increase in graft loss during the teenage and young adult years. That is, a transplant in a 3-year-old has a drop in success 15 years later (when the recipient is about 18) and a transplant in a 13-year-old has a similar drop at 5 years (when the recipient is about the same age). The causes can't be directly inferred from the SRTR data, but could include growth (and a transplant "not growing with you"), differences in adult health care, or noncompliance. A recent study in the journal Pediatric Transplantation has received a great deal of press attention, and describes how adolescents often lose health insurance. It can happen by exceeding time limits on Medicare eligibility, exceeding lifetime maximums, or losing coverage through parents that comes from being dependents. In the transplant setting, losing health insurance can make medications unaffordable and medication noncompliance more frequent. The transition to adulthood clearly seems to have many practical challenges that transplant patients may feel even more acutely.

In the medical world, the Society for Adolescent Medicine's 1993 position statement defines transition as "the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems," and they provide more updated guidelines in their 2003 position paper. Transitioning to adult transplant care is beneficial in many ways. From the practical standpoint, there are:

  • a larger number of transplant centers (so presumably more convenient access to care),
  • more resources, staff, research, and programs devoted to adult transplantation,
  • greater specialization within adult transplant (for instance, far more adult nephrologists practice exclusively transplant nephrology, while few if any pediatric nephrologists can restrict their practice in this way, so they "do transplant too" in addition to other areas of interest),
  • familiarity with general health care needs (such as sexuality and reproduction) that are more significant for adults than for children.

Beyond the practical benefits, adult health care approach the patient as more autonomous than pediatric health care does, which considers every decision to be primarily or exclusively the parents' call. Finally, "normal" young adults (those without chronic illnesses) are seeing adult practitioners rather than pediatric ones, so the sense that young people with transplants have of being "different" can only be exacerbated by going to a children's hospital beyond the expected age.

However, all changes are stressful, even good ones. Transition is the change of an entire healthcare system (not just a doctor) for a young person with all the usual problems of adolescence and an organ transplant on top of it. Also, for obvious reasons, this transition may be especially hard for cognitively delayed young adults. The issues in transition for transplant patients are so extensive that the entire December 2006 issue of Progress in Transplantation (the official journal of the North American Transplant Coordinators Organization or NATCO) is devoted to the topic. The articles there present a more vivid and thorough description than I ever could, discussing transition from different perspectives (patient, nurse, physician), of patients with various conditions, and different models of achieving successful care. One recurring theme seems to be a lack of social connection in an adult center, the sense of being "the only one" who has a transplant at such a young age, while at the pediatric center there were "lots" of other young people. This isn't logically true, since the number of young adults with transplants is greater by head count than the number of children. However, spreading young adults out among the greater number of adult transplant centers probably fosters this perception. I wonder if specific "young adult transplant centers" is something any programs would consider. It may eliminate the convenience factor of multiple centers, but people just coming out of pediatric programs are used to traveling. The many challenges of transition could probably be addressed in a more intensive manner on the adult side if more than a few patients were at that stage. Finally, the social isolation would be less with a critical mass of fellow patients in the same situation.

Finally, aside from the mechanics of transitioning health care, there is the simple experience of growing up and being a young person with a transplant. The cliches of irresponsibility, confusion, isolation, and defiance in adolescents may be a bit overstated, but it's still a rough time, and having a transplant certainly doesn't make it easier or make one immune to these factors. For my part, I didn't encounter any peer pressure to neglect my medical care, but I can't say that I encountered a tremendous amount of support either. Your friends won't tease you into binge drinking, but they definitely won't stop because it's a bad idea for you! This leaves an incredible amount of pressure on the individual young transplant patient, and I can absolutely agree that growing up with a transplant is very hard to do. But I can also say that it gets better. Dorms become someone else's living space and apartments become yours, frat parties get replaced by dinner parties, one-night stands give way to relationships, and summer and part-time jobs turn into careers. All of the latter are much easier to manage and fit in with as a transplant patient, and while growing up with a transplant is challenging, the transplant makes a full life possible.

1 comment:

Jen said...

Great compilation!

Jen, mom of Grace & Meghan, who both have Alpha-1 Antitrypsin Deficiency, a liver genetic disorder