Transition
Physicians advice on transition
Checklist before transition
Physicians advice on transplantation
Physicians advice on transition
ADVICE FOR A SUCCESSFUL TRANSITION
« Transitioning between being a teenager and adulthood can present some very difficult challenges. Young adults with cystinosis have some additional unique challenges to deal with.
Being knowledgeable about your condition and learning how to take control of your condition can aid you in a successful transition. Try to get involved in healthcare related discussions about your care and treatment choices.
Transitioning is a very personal and gradual process. It’s not abnormal to feel like you’re not coping or things are moving to fast. Try speaking to friends, family or a health care professional if you are not coping »
TRANSITION = TAKING RESPONSIBILITY
During your childhood and young adulthood, many people took care of you: your parents, doctors and nurses. Now that you have almost grown up, it is not that they will stop caring for you, but they will pass you over some of the responsibility to care for your disease.
- Try to keep an accurate schedule of your visits
- Keep a note of the names and contact details of your old and new doctors
- Keep a diary of all your treatments and events which seem important
- Do not hesitate to ask for help
- Advice from older patients may also be helpful, but don’t forget to also discuss it with your doctor
THE IMPORTANCE OF EARLY TRANSITION
« It is very important that transition is commenced early and that dedicated professionals are identified to lead this process. Transfer should not take place until the necessary skills to function in an adult unit have been developed and preferably not until major educational and social milestones have been completed. Times of social or medical crisis should be avoided. Once transfer has occurred, the option to participate in a young adult clinic is distinctly advantageous. »
TRANSITION AND THE IMPORTANCE OF EXERCISING
«Transitioning from adolescence to adult life can be complicated by muscle weakness. It is important to maintain a consistent exercise program to keep the muscles strong.»
TRANSITION = LEARNING
« Adolescents living with Cystinosis should take their time to adjust to this exciting stage of their lives. They are encouraged to communicate and speak up for themselves. A lot of focus should be placed on empowering adolescents to smoothly take control of their management. Learning more about medications side effects, the multisystem nature of cystinosis, and relevant transplantation issues (in a culture appropriate way) is crucial and would ultimately improve adherence to treatment and health outcomes. Being a treatable condition is a blessing, try to hold on tight to your treatment. »
Checklist before transition
- I understand my condition and can describe it to others
- I can make decisions for myself about my treatment
- I know my medications and what they are for
- I know what the adult clinic arrangements are and who will be my responsible consultant
- I know how to make my appointments
- I can make my own transport arrangements to get to hospital appointments
- I am able to talk about my worries concerning blood tests and other treatments
- I know who to call in a medical emergency
- I know the restrictions that I have to follow, including diet advice and activity
- I have sufficient knowledge about sexual health matters
- I have discussed alcohol, smoking and drug issues
Physicians advice on transplantation
TRANSPLANTATION
« Renal transplantation is the most appropriate treatment choice for the patients if end stage renal failure develops, preemptive transplantation is the best option however peritoneal dialysis or hemodialysis can be used until a suitable donor is found. Success rate of transplantation and graft survival is good and recurrence does not happen in graft kidney. Recently it is demonstrated that 5 year graft survival is better in patients with nephropathic cystinosis compare to non cystinotic patients in a large European cohort over the last 20 years. To achieve good patient and graft survival, strict compliance to immunosuppressive drugs along with continuing cystine depleting agents to prevent cystine accumulation in extrarenal organs are crucial. »
BEFORE TRANSPLANT
"The best choice of treatment for End Stage Kidney Failure is Transplantation . This has been shown to improve both quality and length of life.The End Stage Kidney Failure can be complex and its management has both medical and surgical challenges. It is, therefore, important that both medical and surgical groups are involved from the start. Careful planning before the transplant requires not only detailed blood investigations, but may need tests to investigate the bladder and blood vessels to ensure a transplant is possible and the best way to proceed further."
DURING TRANSPLANT
"If the kidney comes from a live donor, the operation can be planned and scheduled accurately. Specialist medical support helps to identify the best time to plan surgery as well as enabling the match between the donor and the recipient. The alternative option is a kidney from a deceased donor, however there is unpredictable amount of waiting until an appropriate organ from the donor for transplant is available. This can happen at anytime, day or night."
AFTER TRANSPLANT
"After surgery the patient's care will be looked after both with surgical and medical teams. Over time it will be the compliance with tablets as well as medical reviews that become the most important factors in the kidney's survival"
