Addressing the Pain: Finding an End to the Pain – One Patient`s Experience

   Until recently, my life was filled with endless pain and suffering. A chronic vascular insufficiency has kept me on a long, difficult path paved with the grisly and somewhat gruesome consequences of recurring stasis ulcers. Although my 30-year struggle has a somewhat happy ending, the healthcare industry needs to be more aware of patients like me and do a better job of providing the clinical and financial support necessary for our care.

   My story begins when I was 16 years old. I had a severe reaction to prescription sulfa medicine that resulted in a 30-day hospital stay. After vigorous physical therapy, I was released, seemingly fully recovered. However, my good health was short-lived - several months later, I was bitten on the ankle by a fire ant. This bite caused my first stasis ulcer and the first acknowledgment that my vascular system was impaired.

   Over the last 30 years, I have experienced a multitude of treatments and complications. I have taken coumadin, endured multiple blood clots, and been hospitalized for deep vein thrombosis. Several failed skin grafts were followed by 6 months of bed rest and 2 years in a wheelchair - all unsuccessful attempts to heal my ulcers. I have been treated at two wound care centers that involved trips to Shanes Hospital and Salt Lake City Teaching Hospital. I have undergone 8 weeks of daily IV antibiotic drips for staph infections, hyperbaric treatments, and countless prescription salves and balms. Home remedies were tried as well... to no avail.

   The most painful treatment involved the Unna boot. I used this device for 12 months. The drawing effect of the Unna boots caused a painful burning from the wound site that radiated all the way up to my groin. This pain remained with me 24-7 - my only relief came when the device was changed. Each new application of the device started the whole painful burning process over again.

   One frequently used treatment I grew to fear was the painful process of invasive surgical debridement. Caregivers would scrape my wound without using any topical or analgesic pain relief. My advice to clinicians: The next time you tell a patient, "This will only hurt a little," I suggest that you tell the truth. It hurts a lot. Imagine the feeling of someone using an instrument to scrape inside a painful open wound. Each pass of the instrument would grate at every exposed, vulnerable nerve ending. The excruciating pain caused by this procedure can last up to 6 hours after the treatment. My heart goes out to the many elderly men and women I witnessed over the years struggling to endure some of these same painful treatments.

   Another menacing treatment for me was the zipper pressure stocking. The swelling in my legs caused the stocking to tighten around my calves like a vice grip and the metal zipper would become embedded into the sensitive flesh on the back of my legs. I sometimes wonder if the quality of my life was improved as intended when the treatments I withstood were far more painful than my wounds.

   Because I lacked medical insurance throughout most of my treatments, insufficient financial resources, time spent on treatment, and the pain associated with these treatments created a variety of difficulties in my job and life. At one point, going for a walk with my daughter was a daunting task. Trying to maintain a job as a florist required me to stand for long periods of time. I once was fired for coming to work using crutches. Trust me, interviewing on crutches doesn't create a great first impression. During one of the lowest points in my life, I wasn't able to work, and my daughter and I had to move in with my parents for several years until I, literally, got back on my feet.

   In my 20s, I was embarrassed by the appearance of my legs and longed to feel comfortable wearing shorts and dresses again. In my 30s, this longing was replaced by the need to maintain a quality of life for my daughter and myself. Managing the pain and finding something to heal my ulcers was always at the forefront. By the time I reached my 40s, I stopped seeking treatments and declined offers of the life-altering painful remedies: I started living. I learned to down-hill snow ski using altered ski boots and I cross-country skied and learned to scuba dive. No more, "Stay off your feet" and "Elevate your legs throughout the day and at work" for me, although I could never figure out how to work and elevate my legs at the same time. Once I reached my 50s, I virtually had given up all hope of healing the 20-year-old ulcer on the right inside of my ankle.

   Then I had another encounter with another fire ant. It took aim and bored through my support stocking, targeting an area scarred from a previous ulcer. This resulted in another ulcer on the inner side of my left ankle. I cannot describe how painful a fresh ulcer can be - with all the nerve endings exposed, it's like someone holding a blow torch to your leg. I took yet another trip to my primary care physician. To my dismay, she recommended an Unna boot treatment.

   Not willing or able to endure another painful treatment, I declined and contacted a wound care nurse. She introduced me to a whole world of new products and non-invasive treatments that address the pain issue and its effect on the patient's life. I was instructed to use Mepilex Border (Molnlycke Health Care, Newtown, Pa.), a self-adhesive soft-silicone dressing. For more than 3 months, I have experienced no pain or difficulty when changing the dressing. I can shower with it on and I find it soothing and very comfortable to wear. For the first time in years, I went Christmas shopping for 4 hours without pain or swelling in my ankles. The dressing stays comfortably in place even when I am active, unlike wet-to-dry dressing that has a sandpaper rubbing effect with any movement.

   I am grateful that wound care companies and clinicians continue to look for new ways to provide care. The last obstacle is for the insurance industry to understand and acknowledge that these products are not luxury items - they are medically necessary and should be reimbursable. For years, I have been perplexed by the fact that almost all of the products and supplies required to treat my stasis ulcers are not covered by my current insurance plan. The only way I can get reimbursed for the supplies and products to treat my legs is either to become homebound and receive home health services or to find a physician that I can see every few days for dressing changes. Either option would create problems with my job.

   To all of the medical pioneers, nurses, and physicians, I say "Thank you". I wish you continuing success in striving to find gentle care treatments for the growing community of wound care patients. For me, finally the pain is gone!

   Addressing the Pain is made possible through the support of Mölnlycke Health Care, Newtown, Pa.