I was unaware of the "noncompliance" list until my coordinator brought it to my attention, mainly because my name was on it. To me, being "noncompliant" meant that I had failed to take my medications or do my lab work or see my doctor. I couldn’t understand why I would be on the list. I follow the clinic and blood work schedule according to what has been asked of me and I take my medications as prescribed. But this "noncompliance" list indicated that my lab results have not been submitted to the transplant office...and my name really was on it.
Although it was surprising to be on the noncompliance list, it reminded me how important it is for me to stay involved in my healthcare.
When I checked into what had happened, I found out that my blood test results were not being sent to the Transplant Follow-up office. The culprit was a simple piece of paperwork, a "standing order." I had not known that it was necessary to renew this standing order with my outside organ specialist.
There are so many different people participating in my healthcare: my lab company, my primary care physician, my nephrologist, and my transplant team. I am at the center of all of these providers and I am in the best position to know what is happening with each one of them.
Sometimes noncompliance is not an issue of missed paperwork. Often, patients want to skip medications feeling that the side effects are unpleasant. The good news is that, given time, most side effects diminish. However, if the side effects seem unbearable, speak with the transplant team about possible alternatives. On the other hand, Lung Transplant Coordinator, Terri Cook has heard from patients who wish to skip medications when they feel great.
In her experience, Ms. Cook has seen patients who sometimes feel so good that they believe that the medications or the medical office visits are unnecessary. This leads to problems with their health. "At that point, if patients have something going on, they are afraid to tell us thinking that we will admit them to the hospital so they ‘go it’ alone -- which causes even more problems," says Ms. Cook.
The easist thing to do is to abide by the appointment and labwork schedule and avoid these bigger problems. Liver Transplant Coordinator, Denise Burrell-Diggs advises patients to keep their regular labwork schedule and follow through on medication recommendations. "This can help patients avoid being readmitted to the hospital." Post-transplant medications prevent infections, of course, and labwork helps the team detect problems before they progress to more serious levels. Noncompliance may also be due to patients’ hectic schedules once they return to work or school. However, Debra Carter, Heart Transplant Coordinator warns, "The consequences of noncompliance increases their stress as well as makes their lives even more difficult."
I spoke with another transplant coordinator about being on the "noncompliant" list. Amy Hohman-Runkel, Lung Transplant Coordinator explained her view on compliance as "appreciating and taking care of the sacred ‘gift’ that one has been given, and a second chance for an enhanced life. Compliance is being good to one’s self, realizing that it is the only way to be good to others – to be to good mothers, fathers, sons, daughters, sisters, and brothers. I believe compliance is also respecting healthcare providers that are trying to improve quality of life."
"Noncompliance actually increases people’s inability to cope with their hectic lives, says Mrs. Carter, "Adherence to medical recommendations may decrease the stress and ‘craziness’ in their lives by avoiding complications that lead to hospitalization." |
I agree. I feel I owe it to my family and myself to be vigilant about my medications and follow up healthcare. I also owe it to my doctors, coordinators, and donor who helped me get this far. I want everyone to be able to see my progress for years to come.
-Kathryn Bonner, Kidney Recipient and Kidney/Pancreas Patient Services Coordinator
