Former Surgeon General C. Everett Koop, M.D., said it best: “Drugs don’t work in patients who don’t take them.” In this issue we offer two perspectives from guest contributors about following doctor’s orders.
Asking Questions of the Team, Talking It Over with Others Helps You Stay on Track
In 1985, when I received my heart transplant, the field of cardiac transplantation was still in its infancy and was considered experimental by the medical and insurance communities. To assure a successful transplant outcome, the JHH transplant team knew that certain responsibilities fell on the shoulders of the patient.
One of these responsibilities was compliance. Compliance was absolutely necessary if the transplant was to be successful. Therefore compliance was stressed so fully that it became my own personal mantra. Compliance, compliance, compliance ran through my head daily, and I came to realize that if I wanted to live a full and productive life, I would need to adhere to a very regimented medicinal routine no matter what. Once this decision was realized and internalized, the rest became easier because I desperately wanted to live—I had everything to live for.
Patient education was an important factor in the understanding of the “whys” and “wherefores” of my daily medicine routine. I educated myself as to why it was necessary to take a particular drug, what its side effects were, what its half-life was…in other words, everything I could about the drugs that I would rely on to keep me alive. I knew that if I became complacent and did not adhere to this rigorous routine, I would most likely end up in full rejection and it could even prove fatal. Since I had three small children at home and a future to look forward to, the decision whether to remain compliant was never in question. Family and the fear of dying were very strong motivators even when many of the side effects reared their ugly heads.
For instance, cyclosporine created excessive hair growth and I found myself sitting in my room at JHH sporting a very full “Foo Manchu” that was the envy of every adolescent male! The prednisone puffed out my face and body so badly that I looked extremely abnormal. And Imuran lowered my white blood count until it was almost nonexistent. It was during these times that I relied on my deep and abiding faith and worked diligently at fine-tuning my sense of humor. Since I had no control over these side effects, I placed it in the hands of the Lord and found that being able to laugh at myself really helped immensely. I also prayed for strength and patience to endure these side effects and patience as many new side effects were added. But I continued to take my medications religiously as prescribed.
Was it all worth it? Yes! As I celebrate my 18th year anniversary of my heart transplant I can honestly look back on my life and say that every minute was well worth the effort. Was it always easy? No, but with newer medications today, the expertise of our transplant teams and the support from fellow transplant patients, we can and do make it through this transplant journey that we travel together—to once again become happy, grateful, contributing members of society.
I leave you some final thoughts on compliance. They are as follows:
First, educate yourself—learn as much as you can about your medications. Second, ask questions of your physicians/transplant coordinators. There is no such thing as a stupid question. Third, seek out other transplant patients and share your thoughts, fears and concerns; then listen to what they have to say. Remember, they have been down this same road before and can offer valuable advice. Last, when in doubt always contact your transplant team. Do not hesitate to call them about your concerns.
Just Do It! Take Your Meds on Time, All the Time
Transplant recipients are faced with numerous challenges after receiving an organ. These include complex medication regimens, psycho-social, emotional, physical and financial changes. It is imperative that recipients follow the advice of the health care team to enhance the functioning of the graft and prevent complications, which include rejection and infection. In spite of educating recipients about the importance of following their medical regimen, non-adherence to the prescribed medication regimens continues to be a major barrier to the maintenance of a transplanted organ.
Many factors play a role in recipients’ non-adherence to their medical regimen. Among these factors are an individual’s beliefs about his or her health, complex regimens, unpleasant side effects from medications, and previous experiences with illness.
One of the most common areas of non-adherence is with medications. Some reports indicate the prevalence of medication misuse is as high as 50 percent. As recipients begin to feel better they may not want to take medications that have adverse side effects. In addition, they may not understand the consequences of altering the medical regimen. While all patients are susceptible to rejection following organ transplantation, the medications they must take cause side effects, which in turn require the addition of other medication to counteract or treat the side effects.
Since adherence to the medication regimen is one of the most important aspects in post-transplant care, how can patients follow their treatment regimens even when they don’t feel like it?
One of the most important things patients can do is to communicate with their health care team about the problems they are facing. In many instances recipients don’t share their concerns and may just stop medications without consulting the team. It is the goal of the transplant team to improve the quality of life for all of our patients. Managing the complex medication regimen with all its problems is one of the things we can help with. Talking with your health care provider should be a top priority for recipients. Promoting communication will assist in maintaining your organ at optimal functioning while minimizing the unwanted adverse effects.
—Debra J. Carter, R.N., C.R.N.P., Transplant Nurse Coordinator
