Judy Weintraub transplant recipient, past peritoneal & hemodialysis patient

I feel honored and privileged to be a member of the Patient Plan Team. We have worked on developing a project that takes our life experiences with kidney disease and all that we've learned through ourselves and many others and created a guide that will address the needs of today's new and long-term patients in a thorough and meaningful way.

As an educator who has worked with special needs children and their families and who has trained other educators, I know first hand the value of early intervention, active participation to improve outcomes and the absolute necessity of positive attitudes and high expectations. I can't stress enough how important this is. I know because I have lived for over 25 years on dialysis, beginning at age 15. Through all the highs and lows, there was never a question that I would do what I needed to do in order to live. I learned about my treatment, medications and diet so I could regain some control. And there was a lot more to learn as well.

As my fellow Patient Plan Team members and I sat around the table and began brainstorming, it was not surprising at all to see how quickly the ideas flowed. Our combined experiences totaled decades of first-hand knowledge of hemodialysis, peritoneal dialysis and transplantation. We filled pages and pages of chart paper with the issues and points that we wanted to convey. I know that many times over the years when I had read educational materials written exclusively by renal professionals, I learned valuable information. However, I also know that just as often, I came away feeling that there were large areas that were simply not being addressed adequately. How to navigate the world of the dialysis unit to make your run go smoothly and get the most benefit healthwise. How to help family members, loved ones and friends adapt to the changes in your life. How to handle the emotional toll of a chronic condition. How to navigate your participation in the world-at-large.

After 25 years, I have just received a kidney transplant. The world has certainly changed since my first two attempts at transplantation and so I am approaching this as a first-time experience. Once again, I find myself on a learning curve and look forward to gaining insight in the transplant sections of the AAKP Patient Plan©. As we all know, there are many things in this life that are beyond our control. By becoming informed, we can often help to optimize our situations.  Also, we must always remember that though we may have little control over some circumstances in our lives, we always have a choice regarding our attitudes. And that can make all the difference in the world.

The AAKP Patient Plan© is an idea whose time has come. There are people who have been living with kidney disease for over 30 years. The condition is chronic and the reality is that many of us will experience more than one modality in our lives. Those of us who have been doing this for many years have also learned how to make it manageable and livable and how to continue on with our lives. We know you can too. Years ago, the field was so new and there were not many people around who had experienced kidney disease for any length of time. That has changed. It is our hope to share the information we have learned in the hope of easing the path for our fellow patients. We are grateful and thankful for the medical advances in the past decades that have enabled us to extend our lives. It is up to each of us to make the best of that unbelievable gift. Be well.

Brenda Dyson transplant recipient, past home hemodialysis patient

I've been working with renal patients for 12 years and I've been a patient myself for 13 years. I am well aware of the educational materials that are currently available for patients. Some ESRD Networks and some providers give materials to patients when they begin dialysis and much of this material is excellent. The problem arrives due to a lack of consistency among providers, Networks and corporations. What was missing was an educational program to provide the necessary information to patients when they needed it.

I believe the AAKP Patient Plan© does that. It offers information in a manner that patients will understand. The program was written from the patient perspective and provides the information to the patient when they are ready to receive it.

The fact that Phase 1 is being distributed to all new ESRD patients by the Health Care Financing Administration is a gigantic step towards overcoming the lack of consistency that I have seen across the country. I believe that this program will help patients and providers alike realize that an educated patient is a healthy patient and that all patients need to take charge of their lives.

Kris Robinson transplant patient, past peritoneal patient

I cannot believe that three years have passed since Joe White began talking to me about this idea he had for a "plan" for fellow patients. The idea seemed so clear to Joe and before I realized it, it was developing in my mind too. He envisioned an educational program that provided patients with information from other patients. He believed such a resource would give patients and family members the tools needed to achieve better quality health outcomes.

Before long a volunteer team made up of patients and professionals was set in place and we were meeting and developing all sorts of great ideas. I had never worked with a group of people who were so very committed to other patients. They were willing to put in long hours, talk to other patients, review endless pages of materials and work when they were tired, hungry and cranky. I truly grew to admire and respect Brenda Dyson, Rosa Rivera-Mizzoni, Frank Soldovere, Judy Weintraub, Bonny Wilburn and Manuel Zapata. They deeply cared about the outcome of this important project.

I will not hide the fact that three years is a long time to devote to a project. Raising the necessary funds to provide the Plan to well over 100,000 patients was no easy task. Thanks to our generous sponsors Amgen, Inc., Baxter Healthcare, Fresenius Medical Care, Kidney Care Foundation and Sigma-Tau Pharmaceuticals, we are able to deliver the AAKP Patient Plan© into the hands of any patient who wants it at no expense. The time spent editing, reviewing and working with the graphic artist was immense. But in the end, as the Plan sits on my desk, I realize it was worth every minute devoted to it.

Thank you to everyone who worked so hard on this to make it a success and to all the patients who asked for a program such as this. I know it will make a difference in the way we all take care of our health.

Bonny Wilburn hemodialysis patient

The knowledge and experience we, as patients, have gained along the way can be of great value to other patients. That's what makes the Plan so special. We've already taken the journey others are beginning and we can share it with them.

Working on the Plan was a great experience because I saw it develop in front of my eyes. I know this will help so many patients who aren't sure where to turn. It won't provide patients with all the answers, but it will give them just the start they need to take an active role in their healthcare.

Manuel Zapata transplant recipient, past hemodialysis patient

How do I tell my five year old that I have ESRD and must go on dialysis? How will ESRD affect my relationships with my family, coworkers and others? How can I best adjust to the many diet and lifestyle changes that are brought about by kidney disease? The AAKP Patient Plan© addresses these and many other important questions. Answers are provided by those who have been there. Not only does the Plan provide insights from experienced professionals who have been in the field for many years, it also contains real-life experiences shared by patients who have lived through the various aspects covered in the Plan.

A most important aspect of the AAKP Patient Plan© is that it is designed to be an educational aid for those responsible for helping patients learn how to deal with ESRD. Whether it be a professional staff person, a spouse or a parent who is helping a patient cope, the Plan will offer guidance and information for meeting that responsibility.

Frank Soldovere professional

From the perspective of a nonpatient member of the Patient Plan Team there can be no greater admiration for those patients who have shared their experiences, concerns and beliefs to make the AAKP Patient Plan© a reality. Having worked closely with the renal care community over the past 15 years, I believe that it is critical that the patient's point of view be illuminated for all those who are now or will soon become an ESRD patient.

Over the past two years, each meeting and teleconference became a learning experience and basic assumptions were transformed into carefully positioned pieces of the program. The resulting product is state of the art and as such remains a work in progress. That, to me, is the most important aspect of the AAKP Patient Plan©, its' ability to grow and accept modification as the body of knowledge and real life experiences are reflected in the way diseases of the kidneys are diagnosed, understood and managed in the future.

The original article appeared in aakpRENALIFE, Vol. 16, No. 2, Special Edition 2000.

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