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Taking the Leap: Transitioning From a Pediatric to an Adult Dialysis Unit
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By Malia Langen  For a lot of pediatric patients, visits with their nephrology team can be like going to a department store: they take an interest in a lot of things. You may have gone into the store because you are have a special need in the kidney aisle, but end up passing by the immunology section on the way in and on your way out the dietitian counter offers you special incentives. When checking out, the social worker encourages you to sign up for the latest version of Medicare. Next thing you know, you have walked out with not only an armful of dialysis solution and erythropoietin (EPO, a medication used to treat the effects of anemia), which is what you came in for, but also some antibiotics for that lingering cough and a new way to save on those prescriptions courtesy of the social worker. Sure, once in a while you may have to visit a specialty store, like Cardiology or Rheumatology, but the Pediatric Nephrology department store is so comprehensive they are the go-to first stop on your list whenever you have a need. A Life-Changing Diagnosis An all-encompassing philosophy is important for nephrologists (kidney doctors) to utilize with young patients. Being diagnosed with kidney disease in childhood directly affects a child's life path. For all patients the diagnosis of end-stage renal disease (ESRD) is life-changing, but it is especially so for children. The diagnosis can affect growth and development and is often accompanied by a host of other issues that result as part of a broader disease that has brought on the kidney problems. For this reason, pediatric nephrologists have adapted to become more comprehensive in their care. They usually take an interest in the overall well-being and development of their patients and often become close to the families of their patients. Because the patient is a minor, nephrologistshave to make sure they are well cared for by the adults in their life and give parents the tools to be specialty caretakers for their children. They also keep an eye on the social development of their patients and make sure they are getting educated, both in the traditional sense and medical sense. Both forms of education will be very important for pediatric kidney patients as they acquire the tools to be successful later in life. Upgrade or Abandonment? Patients may be under the wing of their pediatric nephrologist for up to 21 years, and strong bonds are formed. When dialysis patients turn 19-to-21, they are usually shipped off to the adult service. As a former pediatric patient who made the transition almost 10 years ago, I can attest that sometimes this "upgrade" can feel like abandonment. When I speak with other patients who have made the leap, they often talk about their pediatric team in endearing terms and voice how much they miss them. Sometimes they also joke about how much they fought with their team and how they really became a thorn in their side! But even this tension is looked back on by the patient with a fond smile. Their doctors and nurses clearly have left an impact on them, and I believe they secretly hope they have left a similar one on their nephrology team. Preparing For the Leap A smart pediatric nephrology team will prepare its young adult patients for transition to the adult unit. In truth, they have most likely been preparing their patients and the patients' families for many years by teaching them how to properly manage their disease and to be accountable for their lifestyle decisions. What a patient saw as nagging was actually a toolbox for caring for themselves. This includes following dietary guidelines, taking medications as prescribed, and showing up for scheduled office visits and dialysis sessions on time. Some things a patient learns along the way aren't so black and white, like: "Do I need to call the nephrologist on call or can this problem wait until my next visit?" I have never been scolded for contacting the nephrologist on call with a minor problem, but this is just one of the many obstacles that patients often need to learn to overcome on their own. The "Compliance" Word Basically this all boils down to one word that the nephrology community loves: compliance. Patients are often separated into being compliant or non-compliant by how well they follow the directions of their healthcare providers. It is important for transitioning pediatric patients to learn to be compliant on their own. They can no longer be compliant simply because their parents are watching over them or they fear the wrath of their doctors if they are non-compliant. They have to want to be compliant for themselves because, as an adult patient, they are now ultimately in charge of their care. With this power comes tremendous responsibility, but, with the proper tools, this empowerment can lead to a healthful and rewarding transition into the patient becoming his/herown best advocate. Coordination of Care Transitioning to an adult unit is not necessarily a matter of the quality of care patients will receive but the span of the care they will receive. One of the most noticeable differences between pediatric and adult nephrologists involves the coordination of care. Pediatric teams often care for fewer patients and are able to spend more time making sure that various specialties are communicating with one another about their common patients. Adult nephrologists focus primarily on nephrology. They obviously care how their patients are doing in other departments and take an interest in them as a whole patient, but, often, the patient is responsible for communicating to their nephrologist what is transpiring with the other doctors they see and make sure their nephrologist has access to these records. Patients need to be the coordinators of their own care. This is a big responsibility, and they have to use the tools they have learned to rely on through the years. The nephrology department is no longer the all-encompassing department store, but another specialty store. Here are some tools a patient can use for a smooth transition: Know About You Following are some suggestions on how you can know more about yourself and your disease. Know what your health problem is and how it developed. Research your disease and discuss with your doctor any advances in care. Ask questions of your renal healthcare team. Know your medical history. You will be asked about it at every visit to the doctor! Know your medicines, and keep a list with you for doctors' appointments or to have in case of an emergency. Know what doctors you see and for what reason. Be able to tell each doctor what the status of your care is with the other doctors on your team. Be sure to discuss with your doctor any problems you may be having, and ask for referrals to other doctors who may be able to help you if your nephrologist cannot.
Take Care of You Here are some tips for taking care of yourself: Be compliant. Eat right, take medications as directed, and show up for appointments. Show your doctors that you care about you and they will too. Take care of your body. Exercise. Meditate. Pray. Practice yoga. Do whatever it takes to make you feel good about yourself and to take care of yourself medically. Voice your concerns. If something doesn't feel or seem right, speak up! Educate yourself. Have a life outside kidney disease. Take time to find your passion and your dreams.
Practical Tools You will also need some practical tools in caring for yourself: Keep a record of your medical history. Carry a condensed version of your medical history with you when at doctors' appointments and traveling. Always have extra medicine handy in case of an emergency.Have contact information for your doctors readily accessible in case you need to reach them. Create a support system for yourself. People who know about you and can help in case you are sick require assistance or you may just need a friend to listen to your concerns.
A Parental Toolkit Being well prepared for a transition to the adult unit has a lot to do with how well the patients' parents have prepared them over the years to take care of themselves. Parents naturally want to take care of their children and don't want to believe that they will ever have to survive without them. Allowing children to be actively involved in their care at an early age, however, will help them to be responsible for themselves in adulthood. Here are some tools that may help parents prepare their children for their transition: Self-Care Tips Here are Some ways parents can encourage their children to participate in their own care include: Have your child be responsible for preparing and taking medications on time. If your child needs to have EPO shots, encourage him/her to self-administer them. If the child is on hemodialysis and is able to do so, encourage him/her to self-insert the needles. Allow the child to make decisions about fluid and dietary restrictions without being too overbearing. Encourage healthy eating, but ultimately realize that they will choose how to manage the plan on their own.
Encourage Communication To encourage communication, you might consider the following: Teach your child to be comfortable talking to his/her healthcare team. Allow and encourage your child to ask questions at appointments. Once your little one is old enough, have the child phone the doctor on call with his/her concerns. This is a tool they will need to learn to utilize.
Education, Socialization, and a Hope For the Future To encourage education and socialization with an eye toward the future, you can: Make sure you child is as educated, or even more educated, on his/her health as you are. Encourage your child to take interest in and continue the formal education process. Encourage children to have a social network outside the home and allow friends to take an interest in their healthcare. Finally, encourage your child to have hope for the future. When young people believe they can have a future outside being kidney patients, they are given something to strive for and are propelled to want to take the best care of themselves.
Conclusion The transition from a pediatric to an adult dialysis unit should be one in which patients and their healthcare providers feel comfortable. Young adults must be empowered by their healthcare team and trust in themselves to be an advocate for their own best care. A large part of being responsible, self-managing patients is to be compliant with their treatment, medication, and dietary regimens. As we all know, the young adult years can be an emotional and social roller-coaster. It is important for physicians and other healthcare team members to be in tune with their patients' needs. Conversely, it is of the utmost importance for patients to be in tune with their own needs. The best way for young patients to thrive is to take control of their own health in body, mind, and soul! About the Author Malia Langen has lived with kidney disease for more than 17 years. After spending her teenage years on dialysis, she received a successful kidney transplant from her mother in 1995. She is a native Southern Californian who resides in Los Angeles.
Last Updated March 2007
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