Seventeen years ago, I met Joe, to his friends and CPA clients, Joey to his family,–a man who changed my life forever. We became not only partners in life, but in advocacy, for ourselves and others who, like ourselves, had to live a normal and effective life while dodging disease, its complications and side effects of its treatments. We also had to learn to remain positive about our life’s journey, to love, learn, and do for others what we had to do for ourselves.To anyone who would question Joey as to his focus, despite his multiple challenges, he would answer saying he was on “a peaceful mission,” that mission educating and advocating for the needs of other patients. Our years together taught us many lessons, including the true love, the strength it provides during seemingly endless hours of caring for one’s beloved while, at the same time, navigating the often treacherous waters of our healthcare delivery system. This relationship assured us of a supportive advocacy partner, a trusted caregiver, one for the other, developing an almost symbiotic relationship. This would last until his death on October 19, 2007, from cancer, the second leading cause of death in renal transplant recipients.
What was it that provided him with such a strong foundation, one that would allow our relationship to flourish until his death? We both grew up with chronic medical conditions–he type 1 diabetes, me Crohn’s disease. We both learned to manage and monitor our disease, medications, diet, and the numerous co-morbidities inherent with our conditions. At the same time, we learned to understand and deal with the “stigma” that many in our society who live with “invisible” disabilities face. This allowed us to put each facet of life in its proper place leaving room for normal relationships in spite of life threatening events that would regularly find each of us periodically.
“What Made the Difference?”
What made the difference between health and illness, ability and disability, life and death in those with chronic illnesses? What attributes did I see in the lives of those who were able, like ourselves, to live a full and active life despite a chronic illness?
Twenty plus years as a health advocate allowed me to examine the differences in the lives of those who live alone with their disease despite having a “spouse” and those who live with someone who lovingly accepts the role of advocate for their partner. A supportive partner who views the “disease” of his/her partner as their own can make the difference between a full and productive life, disability and, in some instances, death.
Another very important component of a full life despite chronic illness is that of a therapeutic alliance with a physician who stays up-to-date on the underlying disease, its treatments, co-morbidities, side effects of its medications as well as the screening process available to identify complication at a stage at which intervention would save both life and its “Gift.” Joey had labs done religiously every month regularly communicating with his nephrologist by email frequently, date every new symptom and feeling. The physician, patient, and partner must all be able to communicate effectively with each other in order to implement the medical interventions necessary to protect both the patient and his/her partnner.
“Joe Was Lucky”
Joe was lucky. His parents provided him with a wonderful foundation, one on which to build a healthy life. In them he saw how an effective health partnership should function. At the age of 12, he was diagnosed with type I diabetes. His parents were told he would not live past the age of 40.
Unwilling to accept such a sentence, his parents did all within their power to provide him with the tools to enable him to prove his physician wrong. They sent him to a camp for diabetic children where he received the foundation he needed to effectively manage his disease. There he met lifelong friends, several who sadly over the years lost their lives to their disease. His mother partnered with him together learning all they needed to do to assure that he would reach adulthood in as healthy a state as possible. It was that partnership that laid the foundation for the future. It was basically his robust health that saw him through many crises.
The “Number One” Priority
Joey’s health was his number one priority. He learned all he could about managing his glucose, diet, and insulin, switching to an insulin pump that would more closely manage his blood glucose. He faced diabetic retinopathy and found an excellent retinal specialist who saved his sight. When his renal function began to deteriorate, he located a nephrologist at one of the two well-known and well-respected transplant centers in this city. Joey felt that, with him he had a great rapport as well as a physician who was current in his knowledge of renal disease and kidney transplantation, its comorbidities, its complications and the necessary screenings that could prolong life. We were both sadly mistaken, our trust misplaced.
When Joey required renal replacement therapy he continued to stay in control by doing peritoneal dialysis. Joey had labs done religiously every month regularly communicating with his nephrologist by email on every medical issue. After a cadaver kidney failed his sister donated her kidney which lasted until his death almost twelve years later. Every year on the anniversary of “their” transplant surgery Joey would buy Lori a rose for each year he had her kidney. They would share dinner and a movie together just as they shared her “Gift of Life.”
Joey served both on the Board of Directors of the MD National Kidney Foundation as well as the local Organ Procurement Organization – Transplant Resource Center not only to educate himself as to what was medically appropriate but to understand the inner workings of the “process” to be able to convey that information to patients and the general public while serving as a spokesman for NKF on numerous radio and television appearances. If there were a component or practice in place in the transplant process either pre or post transplant he would be aware of it. We were both very much in the inner circle when it came to the dialysis and/or renal transplant process.
“Partners in Life”
Joey and I met in 1990. That same year, his first wife, whom he had met at Camp Glyndon for diabetic children, died. In 1998 my husband of 31 years passed away. Shortly thereafter, Joey and I–partners in advocacy for eight years–became partners in life. From that moment on he learned all I knew about Crohn’s disease. I delved into diabetes, end-stage renal disease (ESRD), and lastly, a disease that could and should have been prevented–colorectal cancer.
As healthcare advocates for ourselves and others, we were aware that immuno-suppressed individuals were at a higher risk for cancer than the general population. We were also aware of the American Cancer Society’s (ACS) screening guidelines, which recommended a colonoscopy starting at age 50 and every 10 years after that if no polyp(s) are found. In fact shortly after it was ruled that tobacco dollars would be apportioned to states to allow them to recoup dollars lost to medical care for the uninsured afflicted with smoking related disease, I spoke at a meeting to decide what would be done with my state’s (Maryland) tobacco funds. I encouraged earlier and more frequent screenings for transplant recipients. Unfortunately, my words fell on deaf ears.
What Happened and Why?
Based on my knowledge of digestive diseases and complications, we felt Joey was safe from colon cancer. In 1999, he developed C diff, a gastrointestinal infection, and had a colonoscopy which was completely clear of polyps, precursers of colon cancer. He was then 45, 5 years younger than the age (50) at which the ACS recommended having the first screening. Five years later at age 50 he had another. Unfortunately it was then that he was diagnosed with stage 3 colon cancer, a death sentence with only a 6% chance of survival over a five-year period.
“What Happened… and Why?”
During the many months of chemotherapy, I accessed nearly every journal article on cancer and cancer screening guidelines in renal transplant recipients written and published in both renal and transplant journals beginning in the late 1950s. What did I find?
Since the late 1950s, it was recognized that all transplant recipients had a higher incidence of cancer than the general population. Most, if not all transplant programs included information and screening on cancer in pre-transplant patients but NOT POST TRANSPLANT RECIPIENTS. Joey’s transplant center had screened patients on the transplant waiting list but NOT once they were transplanted. Why not?
WHY NOT? Was Joey’s nephrologist aware of these articles addressing PRE and POST TRANSPLANT PATIENTS? While I have no idea which one of these articles he specifically read, I did find that he authored several of them himself beginning in 1982 and ending in 2006.
The Big Questions
If you are a transplant patient, following are some questions you should ask and know the answers to:
Question: Since cancer is the second leading cause of death in renal transplant recipients, was it’s risk on the radar screen of Joey’s transplant center?
Answer: In transplant ‘recipients,’ skin cancer is the most common form of cancer followed by non-Hodgkins lymphoma, virally mediated cancer such as hepatitis B & C which can lead to cancer of the liver. Cancers are more common in tissues that turn over rapidly such as in the colon and the tissue of the urogenital tract.
How Often? I would never recommend following the ACS guidelines for transplant recipients. My research has found reports of cancers beginning as early as the first post transplant year. Dr. Israel Penn, founder of the Israel Penn Internationsl Tranplant Recipients Tumor Registry, said that cancer in transplant recipients appears 20-30 years earlier than in the general population thus obviously AGE is NOT criteriea touse when beginning cancer screening in transplant recipients OR anyone who is immunosuppressed.
Q: What did Joey’s nephrologist say about his particular cancer situation?
A: There are “no formal cancer screening guidelines,” and “there are no funds to do what the primary care physicians should do.” There are existing guidelines for screening those on the transplant waiting list as well as post transplant. It doesn’t take much to make patients aware of their risk and to introduce the subject of post transplant cancer screening.
Q: Are the current screening guidelines for transplant recipients adequate to change this reality?
A: Yes and No. As the mother of a renal transplant recipient I would not feel safe recommending the current post transplant guidelines to my daughter. There are colon cancer guidelines but they are no different than those for the general population. They are AGE based and, in my opinion as well as the opinions of many renal transplant professionals, transplant recipients screening guidelines should be based on individual criteria and NOT age such as immunosupression, race, sex and family history. Suggestions: Mark your transplant BIRTHDAY the beginning of your life as a transplant recipient; on that day each year schedule the screening tests that apply to you.
Q: What did the Society for Surgery of the Alimentary Tract recommend?
A: The Society for Surgery of the Alimentary Tract (SSAT), a major professional digestive disease organization, performed a 30-year prospective study on colorectal cancer in the renal transplant population. they found that current guidelines MISS 25% of colon cancers in transplant recipients and recommend screening early and often – every 2-3 years. The American College of Gastroenterology recommends screening African American males beginning at 45.
Q: Would this make a difference?
A: Because colorectal cancer, the 2nd leading cause of cancer deaths behind lung cancer in this country, is the one cancer that can be prevented by removing the polyp that has the potential of eventually becoming a malignant tumor, it would certainly make a difference. Screening early and often would identify the polyp and remove it thus preventing its growth into a malignant lesion.
Individual Screening Guidelines Needed
Joey lived to 52 and should have lived well beyond that age. It was not the failure of my role or Joey’s to usurp the role of the renal transplant professional. Every transplant center should have had in place a cancer-screening program for every one of its post transplant patients OR, notify the recipient’s primary care physician or renal professional in the recipient’s hometown.
Together – in a therapeutic alliance–patient and physician should have developed individualized screening guidelines – as supported by several prominent members of the renal transplant community – Drs. Kiberd, Danovitz and Buell, specific to each patient’s immunosuppression first, followed by other criteia – race, sex, and family history. In the case of colorectal cancer, a patient should have the first colonoscopy before transplantation, one year post transplant, and, if found to be free of polyps, every 2-3 years thereafter, as recommended by the SSAT. In my opinion this would have saved Joey’s life.
With me by his side, Joey fought long and hard to live. For the first time in his life, he was no longer in control; his cancer was. Together, we did everything we knew to help him stay well. If the recommendations in many of the renal and transplant journal articles supporting individualized screening based on immunosuppression had been a poster on the wall in the transplant center, a pamphlet on a table in the waiting room, the subject of a meeting by one of the many renal non-profit agencies, we–my partner, my love and I–would be here together supporting each other. We would be assuring our wellness, sharing all that we have learned to stay well. What we couldn’t do was what the medical professional could and should have done. They should have done their homework.
Cancer should have been on their radar screen, and that screen should have been front and center before not only pre transplant patients but also post transplant recipients. The transplant community should be educating community nephrologists and primary care physicians, those to whom transplant recipients return for their day to day care about the need to screen based on individualized cancer screening guidelines.
What have I learned over the years that can make the difference between life and death to the transplant recipient, to anyone with a chronic, potentially life threatening illness?
Choice of a physician should not be based solely on that person’s “rapport” with a healthcare professional. Of course, it is an important factor, but just because you may be comfortable conversing with the physician does not necessarily mean he/she is up-to-date on the latest tests, treatments, and scientific information. Some of the best clinicians are not great conversationalists, nor are they “warm and fuzzy.” Being “warm and fuzzy” doesn’t save lives.
Talk to other patients, talk to nurses. They are the best judge of who is the best physician. It is important that a physician is “published,” that he/she is respected by his peers and viewed as competent yet not devoid of the ability to listen and hear. Without basic respect and understanding of the patient within his/her environment, wellness cannot flourish.
It is very important that every renal patient, indeed anyone with a chronic disease, identify someone in his/her life who can willingly accept the role of advocate/partner/caregiver. These are the two most important decisions anyone with a chronic, life-threatening disease must make–who will be the physician and who will be a partner in fighting the illness.
Each of us lives life in our own time. We are blessed to be living in an era in which newer, more effective immunosuppressants are allowing people to live with their transplant into the second decade and beyond. However, be aware that this can be a double-edged sword requiring a delicate balance between maintaining someone’s transplant while, at the same time, allowing the immune system to continue its protective role destroying bacteria, viruses and yes, cancer cells, preventing them from taking hold and becoming malignant. When Joey was diagnosed he was on 3 immunosuppressants – Prograf, Cellcept and prednisone. Prograf and Cellcept were immediately STOPPED. For two years until his death his transplant functioned well on 10mg of prednisone alone.
Through surgery, chemotherapy and infection the transplant contiuned to function. Yes, his creatinine rose when he was fighting infection but it “fought” to live as did Joey. I am NOT recommending that anyone stop any medication their physician has prescribed. I am only suggesting discussing this issue with him/her. Until medical science identifies the “gold standard,” the optimal drug at the right dose, cancer must be put front-and-center on the radar screen of everyone in the renal community especially in those in transplant pharmaceutical research. Only then will cancer’s place as the second most frequent cause of death in renal transplant recipients decrease.
Joey was blessed by a close wonderful, loving family and friend who were by his side 24/7 during those last months. Modern medicine can keep the body going for many months, when without that intervention life would end sooner. Joey didn’t want to leave us; we didn’t want to leave him. That choice had been wrested from “our” hands when the professional community decided to focus its attention on other issues. It is time to focus on preventing that which is preventable; diagnosing early other cancers when one has the best possible chance of living on with the “Gift of Life.” Today sadly many renal transplant recipients die of cancer while their transplant functions to the very last breath.
Joey and I were blessed to have found each other. Together, we were able to lead “purpose driven” lives dedicated to making the lives of others easier to bear. Why? Because it is only in giving that we receive; it is only in loving that we are loved.
The very thing that made our lives difficult gave us the strength to expand our lives to include many others. Through them, we would learn and grow, broadening our knowledge base so we could reach heights once never thought possible. Kidney disease brought us together that December night in 1990, everything that transpired before and all that has happened since brought us even closer, providing us with the strength and compassion to face his passing together. A spouse/partner cannot play the part of physician; neither can the physician play the part of a “partner.” Only when each accepts and understands his/her specific role can wellness exist and life continue. Joey’s “peaceful mission” has been silenced, but mine continues, still supported by his strength, wisdom, and love.
About the Author
Pearl Lewis, founder of the Crohn’s and Colitis Foundation of Maryland and the Maryland Patient Advocacy Group, has been a patient advocate for nearly 25 years. As a Health Advocacy Specialist in the Office of the Maryland Attorney General, she was able to connect with government and aid in preserving and advancing the Maryland Kidney Disease Program. The mother of six, two of whom have ESRD, and now widowed twice, she used her personal experience with chronic illness to assure others of the federal and state benefits she, her children, and spouses relied upon. Working with patients and their families as well as her contacts in public and private agencies, Pearl was able to effect change for the better on all levels, thereby easing the burden of chronic illness on patients and their families. For more information, log onto: www.kidneyadvocacy.50megs.com.
Article uploaded 12-31-2007
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