Organ recipients need strong partnerships with their doctors

I am a cystic fibrosis (CF) patient with a complex medical history that either intrigues or intimidates medical providers. At 40, I’ve dealt with a lifetime of progressive lung disease, gastrointestinal complications and other later onset issues from CF such as osteopenia, diabetes and bowel cancer. I often joke that the recessive CF gene that my identical twin sister and I inherited from our Japanese mother and German father is the “gift that keeps on giving.”

Throughout my childhood, I only saw specialists, and was under the impression that primary care pediatricians were only for “normal” kids.  Not until adulthood and a change of insurance requiring a primary care gatekeeper did I meet my first “normal” person’s doctor- my primary care provider. After two double lung transplants by the age of 35, and progressive CF gut disease, I honestly thought, “What could a primary care physician offer me?”

After years of being followed by many specialists – endocrine, pulmonary, infectious disease, dermatology, GI, oncology, ophthalmology -I’ve witnessed how easily a fragmented specialty approach can result in a lack of communication between providers. I then realized the incredible value of my primary care physician. They served as the birds-eye view of my health and looked down the lens of the bigger picture, to views that specialists often overlooked. For example, during a 2-year bout with severe gastrointestinal distress supposedly the result of CF, my primary care physician noticed I was extremely anemic. Fifteen years earlier, my mother’s colon cancer was detected due to a low hematocrit. This helped raise my suspicions and insist on further investigation and exploratory surgery, which led to a diagnosis of small bowel adenocarcinoma. By offering routine evaluations such as vaccines, pap/pelvic exams, and evaluations for my newest chief complaint- sports injuries as a result of new lungs! – I have gained more respect and gratitude for primary care’s role.  At my doctor’s office, I have a sense of satisfaction and pride that I am at the doctor for something “normal.”

Fortunately, my doctor is open to a mutual collaborative learning experience, respects my experiences and knowledge base as a “professional patient,” and acknowledges her limitations in being able to treat something as complex as cystic fibrosis, lung transplants and bowel cancer. She partners with me as a patient for care that is truly patient-centered.  I appreciate the breadth of knowledge that all physicians must have, and recognize the inability for any health care provider to know everything. I’ve learned this first hand myself, working as genetic counselor for over 15 years.

Discovering my appreciation of primary care physicians, I have been particularly impressed by those who have knowledge about organ donation and transplantation. Recently, the non-profit transplant advocacy group, Transplant Recipients International Organization (TRIO), featured in their October 2012 newsletter, an article about the “grassroots” approach of educating primary care providers called the “TRIO PCP Process.” This encourages transplant recipients, living donors, and donor families to dialogue with their primary doctors about organ donation, sharing their stories and asking their doctors if they talk to patients about being organ donors.

Studies have shown that most physicians support organ donation and see it as part of their responsibility to bring up that topic. Almost everyone can potentially be impacted by organ donation and transplantation – no one is immune to illnesses that may potentially cause the need for a transplant or tragic events that may cause a family to consider organ donation due to brain death. Primary care clinicians have a vital role in educating and planting a seed about this important topic to their many diverse patients.

As a result of successful lung transplants, my twin sister and I have both been able to compete in the USA Transplant Games, hike Half Dome, run half marathons, work, marry, and volunteer for charity. Transplantation has truly been the best gift of our lives. More importantly, we have become very involved in the organ donation cause, cystic fibrosis awareness and patient advocacy. We published a family memoir called The Power of Two (Univ of Missouri Press, 2007), which influenced the making of a documentary film of the same title. The film brings to light the spirit of advocacy that can arise from a lifetime of illness as well as the complex cultural influences on coping with illness and the acceptance of organ donation. Many fears and myths about organ donation exist within minority populations in the United States, and primary care providers can help dispel them.

I appreciate being cared for by a primary care doctor, so I could learn the value and importance of primary care. Her role in caring for chronic conditions as well as routine issues for complex patients like me is vital.  My physician’s patient-centered approach and her openness to both teaching and learning from patients gives me hope that there are many others like her. Through doctor-patient partnerships, organ recipients can share their stories with doctors who can pass the good news along to their other patients.

Anabel Stenzel is a genetic counselor. She blogs at Primary Care Progress.

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