Ben Zuniga was attracted to nursing by a rare diagnosis—his own. Passionate about his job, he developed a first-hand knowledge of life as a chronic wound patient—a nightmare that almost pushed him over the edge. After many failed treatments over more than a decade, and ready to give up and face a leg amputation just to get rid of his wounds, he, almost by accident, found Enluxtra. The treatment saved him from loss of his leg and helped him return to normal life.
What happens when the nurse becomes the patient? Does all the schooling and experience in the trenches prepare you to deal with your own health crisis? Can you maintain that same spirit of hope you try and bestow on your patients even when your wounds aren’t healing after a dozen years?
Having been diagnosed at 18 with Dysprothrombinemia, a blood clotting disorder, I had been overwhelmed by medical jargon and a feeling of confusion and hopelessness. A trip to the Mayo Clinic for further lab studies compounded my fear. I decided go into nursing, to study and work hard to be able to help patients through whatever challenges they faced. I eventually became a nurse practitioner.
I love my work, from those early days in an ICU to the hectic pace of a busy ER. But having a clotting disorder and not knowing when the next bleed episode will occur was always in the back of my mind. I tend to bleed into the tissue which turns into a big hematoma and is resolved in 3 - 4 days after receiving two units of fresh frozen plasma. It’s something I have learned to accept.
In 2000, I experienced a fall resulting in what appeared to be a simple abrasion. Although it was properly treated, the wound kept getting worse. My primary physician referred me to a plastic surgeon. A cardiovascular surgeons were added to my medical team. Veins were closed down in my lower leg partially to deal with the edema. In several years between two cardio docs, I had 2-3 procedures each.
As one small wound grew into two large ones, my treatment went from unna boots and compression stockings to hyperbarics and skin grafts. Wearing the unna boots or stockings was like wearing a tourniquet, causing a continuous throbbing in my ears throughout my shifts. At day’s end, I rushed home to remove them and elevate my leg. My doctors tried everything. The hyperbarics weren’t effective. Multiple skin grafts didn’t take. The discomfort, inconvenience and pain grew to be a constant in my life.
The wounds’ size and amount of drainage continued to increased. I became more uncomfortable while working, although I never let my condition compromise my patient care despite the pain. Not only did the dressings tug and pull as I moved, my shoes often became saturated and I had to replace them more often due to embarrassing odor. Even after the most grueling 12 hour shift, I dreaded more going home to attend to my wound, knowing the pain of removing the saturated dressing would be severe.
I found attending my son’s high school activities almost impossible. I withdrew from most family activities outside the house. I took Tylenol and would have my son bring me an ice pack just to change dressings. The pain became worse, but I steered clear of narcotics or opioids because I never wanted to be sedated or impaired while making clinical judgments.
I was a good wound patient. I did everything I was supposed to. I cleaned my wounds out. I changed the dressings. I did the debridements. There’s nothing I didn’t do to keep it as healthy as possible to try and heal this wound. My doctors knew me and my work, but were still surprised I didn’t end up with something like osteomyelitis having a chronic wound for such a long time.
After 12 years of this, I was desperate, now seriously discussing amputation as an alternative to a lifetime of pain, discomfort and embarrassment.
I searched the internet (as we all do) to see if anything new might offer at least some relief and a little hope. When I found a new class of self-adaptive dressings on Facebook, I ordered a sample of “Any Wound” Enluxtra. I had tried everything else. I had nothing to lose except perhaps my leg. With the help of a online videos and nurse who had worked with the dressing, the wound bed began to heal, the drainage began to be managed and the pain of changing the dressing was no longer a concern. Dressing changes went from daily to weekly. After $80-90,000 in medical expenses over a period of twelve years, I was finally beginning to heal.
Amputation is no longer on my radar. I now believe I can be healed and have rededicated myself to not only being a better father and husband, but also a better caregiver and teacher to my patients. I can exercise again. I have attended high school sporting events. And I took my younger son, for the first time, on a family outing to Sea World.
I learned, through my own trials, that just when you feel like giving up or giving in, your situation can turn for the better. There are new advancements in medicine almost every day. And we need to remain steadfast and take ownership of our own health, even with the best doctors and nurses working with you. This is something I want to share with my patients, my family and friends. Never give up.
There is always hope.
Ben Zuniga, a Nurse Practitioner at Spohn Memorial Hospital, is planning to take his family to the beach for the first time in more than a dozen years.
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*All stories and photos are published with expressed agreement of the patients.