You Must Be Present to Win

By Gigi Spicer, RN Director, Kidney Transplant Service, Henrico Doctors' Hospital, Richmond, VA

I have been reflecting on the current state of health care today. I have spent 40 years in the care of individuals with a chronic illness. When I graduated from nursing school in 1969, I could not imagine what I have seen in my professional lifetime. The ability to control many conditions that in the past had no treatment is a tribute to the research and development supported by our research dollars. We now have evidence of the effect of high blood pressure and high blood sugar on the kidney, which has placed them in the top two leading causes of kidney damage. The National Kidney Foundation has provided the leadership to identify and outline the appropriate treatment plan to slow and even halt the progression of chronic kidney disease. What is missing is the lack of understanding or unwillingness of patients to follow their treatment recommendations. This is the major barrier to successful disease management.

Understanding the required steps in the treatment plan turns out to be dependent on a patient's ability to develop a relationship/partnership with care providers. Coping with a chronic illness requires a serious reorganization of personal priorities. Patients will need to create new habits and become experts in their own self-care. This means it is necessary to learn the reasons for the specific treatment plan. Together with the transplant team, the patient can make choices and help create a plan that works for them.

This requires finding a team that you can trust. This team will take the time to help you be successful, and will allow you to feel free to discuss your needs as well as the difficulties in dealing with the treatment plan.

Taking medications is the cornerstone of the treatment plan for Chronic Kidney Disease. I have listed the typical problems I have seen in my practice along with some practical solutions that individuals have shared with me that have allowed them to be successful in managing a complicated medication program.

  1. Forgetting to get your prescription refilled. This can be especially difficult if a patient has a mail order plan and has not taken the time to learn how to use this benefit. Ask for help to get this started and you will find it does save time as well as money.
  2. Forgetting to take one or more medications. Most patients' get a pillbox to set up medications and keep the medications in a place that gives them a reminder to take them. For example, some people keep the pillbox in the bathroom and take their medications after brushing their teeth. Others have a time alert on their watch or phone.
  3. Not taking the medication at the prescribed time. Be sure to understand the reason for the timing of medication. Some medications last in the blood for 12 hours and therefore need to be taken at 12 hour intervals. Others last only 6 or 8 hours so need to be taken more frequently. The timing of the medications may be adjusted based on the patient's home routines. The transplant office may help patients in how to organize the timing of their medications.
  4. Stopping the medication or changing the frequency without consulting your team. If patients are having side effects, it is important to discuss the problems with the transplant team. Often they can make changes that will be effective over time.

Receiving social support from healthcare providers and from within the circle of family and friends is highly effective in helping patients be successful in their health management. It is a lack of understanding or unwillingness to follow medical recommendations that continues to be a major concern for patients with long-term medical conditions.

In short, there needs to be a partnership between the patient and the transplant team that allows patients to get the correct information to make informed decisions about the plan of care to achieve the maximum benefits of transplantation.