“Stay Off Your Feet!” A Patient’s Struggle to Adhere to Doctor’s Orders

Editor’s Note: The following article was written by the patient and lightly edited for style and structure.

  In 2011, I was diagnosed with type 2 diabetes at age 65. My diagnosis required me to change my life — from modifying my eating habits to beginning an exercise program and taking daily medication.   Like many people who live with diabetes, I developed an ulcer on my forefoot that became infected. A surgeon who had performed debridement of the ulcer, which was measured at 3 cm in 2011, recommended transverse resection, but I refused because I was afraid to have part of my foot amputated. After several weeks of debridements with minimal success, during which time I was urged to stay off of my feet as much as possible in order to improve my chances, I received little in terms of real education or clear answers to questions like, “How can I avoid amputation?” and “How will medications possibly help me?” Feeling desolate, I walked into a local outpatient wound clinic near my home in Meridian, MS, where I’d undergo bandage and dressing changes every two weeks for about two months. Like my surgeon, the wound specialists at this clinic told me that amputation was inevitable.

  Now very fearful, I decided to search online for a new wound care provider. I took a chance last October and decided to visit the wound clinic at the University of Mississippi Medical Center (UMMC), a 180-mile round trip. At the time, Dr. Harriet Jones, MD, BSN, FAPWCA, was not taking new patients. Determined to be seen there from what I had read about the facility online, I decided to contact Dr. Jones personally to ask her to help save my foot.

Different Approach to Care

  During my first visit, Dr. Jones thoroughly explained to me all of her concerns and expectations regarding my wound, as well as my prognosis. I would have to stay off my foot for at least 45 minutes per hour, could not get my foot wet at all (a stark contrast to a previous suggestion that it would be “ok to visit the beach to dip my feet in salt water”), had to control my diet, and would need to attend weekly office visits.

  I was astonished at the amount of time she spent with me and the detailed information I received. Before even examining my foot she asked many questions about my life, my work, my living arrangements, and my behaviors. Though it was the first time I had met her, it seemed like I was talking with a friend because she was so warm and listened intently to everything I told her. She explained to me that the success to healing was in my hands, so to speak. I thought to myself, “How hard could that be compared to losing my foot?” but I underestimated just how difficult that could be. For instance, how could I be healthier via exercising without being on my feet, I wondered. I was encouraged to lift lightweight dumbbells or household items such as canned tomatoes to maintain upper-body strength. I also developed many techniques to maintain daily living, like cleaning my bathroom and bedroom in two 15-minute sessions by working my way around each room with a “clean” basket of supplies and a “dirty” basket while moving with the assistance of a wheelchair or walker. I save the actual cleaning of laundry for the next day and I’ve purchased plastic boxes that slide under my bed to place linens. When sheets need changing I do so by sitting on the bed and replacing the used sheet one corner at a time, requiring minimal standing.

Struggle to Self-Care

  For the first few weeks of my treatment I was very compliant, which enabled my wound to show signs of healing. I was granted disability at work and I began to coordinate my life around my visits to the clinic, where my provider team remained encouraging. Almost every visit consisted of debridement and application of an antimicrobial sliver dressing and a hydroconductive wound dressing. After each good report at the clinic, I would go home and add a little more activity to my schedule, such as garden work, taking my grandchildren to school, and shopping. I was so sure that I was doing so well that I would actually begin to skip appointments. Within six months of my care at UMMC I was doing just about everything I should not have been, such as staying on my feet for prolonged periods and not adhering to Dr. Jones’ orders. I eventually ended up with another infection, which sent me to the hospital for one week and required another debridement. I was devastated, unhappy with myself, and felt that I had let down my doctor and wound care team. I have to admit that I was not receptive or respectful to their insistence that I undergo hospitalization at first, but to their credit they didn’t necessarily take “no” for an answer. Today, I thank them for that.

Reaching Recovery

  Following my hospital stay I returned to Dr. Jones for a clinic visit. This time around, her demeanor and disposition were not so inviting. In fact, she scared me very much. Here was a doctor who was now explaining that a metatarsal amputation was essentially next for me and how I would be able to walk with specially designed shoes — but that I had to face the facts and accept what my disease and my behaviors had led me to: There was simply not enough tissue on my foot for a surgeon to stitch the wound back together and there would probably not be another debridement in my future. I did not like Dr. Jones that day. She was telling me I could not heal my wound. But she also insisted that she and my wound care team were not giving up on me and that they would continue to treat me until that time. That was very comforting and encouraging.

  After a few visits, a severe storm forced me to miss an appointment, which prompted the clinic staff to call me at home and to urge me that I reschedule for the following day. I did, knowing full well by that point that I needed to follow any orders given.

  Today, my wound continues to heal and is less than 1 cm in width. I’m back to my weekly visits, and staying off my feet is again proving good results. I am proud to say I’m doing better and honest enough to admit that I’m lucky to be where I am with my wound and my health, even if things are not at times easy. I’m using an offloading boot, crutches, a wheel chair, and a walker as necessary. I’ve learned that going to work or a social function, spending time with my grandchildren, and even cooking a meal has to take second place to taking care of my wound. I am strictly adhering to 15 minutes of “up time” per hour. My wound is my priority. I understand that while many people deal with the same problem that I am, everyone’s self-care is unique. Every morning I remind myself that my wound is still here. I’m not experiencing any pain anymore and I’ve taken measures to help me stay healthy. I’ve purchased 12 pairs of reading glasses so that I now have a pair at every chair and bed in my house, which saves me from having to get up multiple times per day for something avoidable. My garden now only receives only 15 minutes of attention per day and my daughter cooks for me. At times I feel somewhat unhappy, lazy, or helpless, but I always remind myself that I would be more helpless as an amputee.

Staying Healthy

  I have been living on my own for about 25 years, raising two children with a strong support of family and friends. But even that is not enough to heal my wound. It’s knowing that I have to report to Dr. Jones and the clinic each week that helps make everything easier. I am not a clinician, but I realize the way healthcare is changing — appointments are tougher to get and visits are getting shorter and shorter as providers are stressed with time management. These challenges did not initially help me remain compliant. I needed someone to really talk to me. I needed someone to take the time to share tips on how to stay off my feet. I needed someone to make me accountable for my visits and self-care. I needed someone who would talk with me about everything from personal relationships to everyday life in order to help motivate me. Just receiving a phone call for an appointment reminder during a stressful week has helped. With each visit that I make to the wound clinic at UMMC, I know that I’m that much closer to healing.