Sheri Denkensohn lives and works in America. She explains how pressure ulcers almost cost her her livelihood – and her life.
As a C4 quadriplegic woman, now 37 years post-injury, I have battled pressure ulcers for most of my life. Over the years, pressure ulcer episodes and their related health conditions, have sidelined me professionally. More than once, they have nearly cost me my life.
The impact of pressure ulcers is emotionally draining and physically debilitating. “Fixes” for the problem were elusive and deeply frustrating. In recent years, technology and improved treatment have lessened the impact of pressure ulcers. I have found that relying on some basic longstanding techniques, coupled with new developments in medical equipment and treatments, I can often avoid this serious and potentially life-threatening condition, and more effectively address ulcers when they do occur.
The not so good old days
You can usually figure out how long an individual has lived with a spinal cord injury by examining their experiences with different types of wheelchairs and cushions – and associated pressure ulcers. For those like me, injured more than 30 years ago, wheelchairs resembled the dinosaur age. Seat cushions had all the quality and flexibility of an old mattress.
My first power chair did not have the ability to tilt and recline. As a tetraplegic without trunk support, I did the “left-arm hook” with my arm wound tightly around the left back handle of the chair. I spent approximately 14 to 16 hours a day driving with my right hand while straining to hold my body upright with my left arm. In rehab we were taught to look for red pressure areas and instructed to change position every 15 minutes. Seriously? How do you switch positions as with quadriplegia? How do you a pressure release when the wheelchair is unable to do it for you? And this is all further exacerbated by the fact that as a quad, you can’t feel uncomfortable spots as they develop. At the time of my injury, I was young (just 16), and my skin was still “fresh.” But this changed.
Pressure ulcers emerge
I experienced minor pressure areas in college. I still did not have a chair that tilted and reclined, but I had graduated to a Roho cushion and the pressure areas did not open. When I got a new chair and cushion from a reputable durable medical equipment provider, there was no such thing as pressure mapping – just try it as you go and watch. But I was young and more interested in having fun than thinking about the impact on my skin. Making sure my chair didn’t break down or get a flat tire was more of a concern than a possible wound. With this laser focus on keeping my wheelchair running, I developed a close friendship with my wheelchair provider and his wife. I had his personal cell phone number, and he would even rescue me on weekends if needed. I was scared to leave Albany, New York, for fear that I would not find another wheelchair provider who understood the concept of independence and my absolute dependence on a working wheelchair. So, before leaving New York to attend law school in Washington DC, I purchased a new wheelchair from Kenny. I left for my new adventure with a new power chair that tilted and reclined. No more hooking! I also purchased a higher quality Roho cushion that better fit my small body structure. But, again, pressure mapping was not a component of getting a new chair, so seating was done blindly. My focus remained on mobility and not preventing pressure ulcers.
My first serious pressure ulcer occurred during my first year of law school. I had a series of certified nursing assistants, and one phenomenal, registered nurse. She noticed the pressure ulcer right away. Time is critical; pressure ulcers appear quickly and get bad even faster. At that time, wound clinics were not readily available, even in the nation’s capital. So, with the advice of friends who were also spinal cord injured (SCI), I chose the homeopathic route and used gel from inside an aloe plant. To promote healing, I had my night attendant use a blow dryer to seal the aloe. One morning not long after the wound appeared, when my registered nurse arrived to take over, she screamed out loud when she pulled back the covers. I had a massive blister that overtook the wound. Obviously, the blow dryer was too hot. A nightmare I will never forget. I had to be completely down for four months during my first year of law school. I was listening to lectures on tape and trying to read my huge casebooks on a tilt table. You can imagine how incredibly stressful this was.
The impact of injured skin
This started the era of my struggle with pressure ulcers. This cycle of pressure ulcers and healing weakened my skin further and made it harder to address the ulcers. I had a busy schedule, with a full-time job and lots of fun to have. I did not tilt every 15 minutes as advised. I was unwilling to put life on hold and stay in bed to heal a pressure ulcer, in part, out of fear that I would not keep up at work. Additionally, my body did not react well to being down for long periods of time. I had multiple bowel obstructions over the course of 6 years, some life-threatening. When I was bedridden, I couldn’t eat realistic size portions of food, or I would wind up with an obstruction. It was a Catch 22.
The situation worsened. At one point, approximately 15 years post-injury, my life revolved around pressure ulcers. I visited the wound clinic every Friday to have a major pressure ulcer on my sacrum examined. I was using the tilt and recline function. I scheduled my first pressure mapping, after which I switched to a Jay cushion. Now we could see the bright red shining spot on the screen confirming the pressure area! Even with the different types of wound healing regimens, (and insurance was not the eager to approve some of the newer treatments), my wound doctor ultimately determined that I needed flap surgery.
I had the surgery. While I was still recovering in the hospital, my care team decided that I needed a body support to sit up straighter to avoid future pressure ulcers. But the outcome was dismal. Being fitted for body support requires close coordination between orthotics and physical therapy. The orthotics personnel and physical therapy were so busy that by the time I was discharged, the support was leaving marks on my ribs that turned into wounds. The situation was exacerbated by (unusually) lax nursing care — such that as an inpatient, I was not turned as frequently as required to heal. After multiple fittings, the orthotic team determined that my body was not big enough to get the right orthotic to keep me erect without leaving wounds. The game plan became one of working with physical therapy on appropriate seating to ensure that the flap remained intact.
After returning home, though, the flap opened, and I couldn’t get an appointment for over a month for another pressure mapping. Once again, I was living with a wound that was moving quickly from Stage One to a place of no return.
Due to quadriplegia, I couldn’t “feel “the pain of the wounds, at least not as someone without an SCI would. Instead, my body reacted to the wounds with sweating, discomfort, and anger. I did not want to be down. I knew it was in my best interest to remain flat, but I was afraid of another bowel obstruction. I tried to keep my diet as healthy as possible, but no amount of protein would heal the wound.
SCI specialists needed
I was rightfully frightened and so made the decision to go to the Shepherd Center, in Atlanta, Georgia. This facility is one of the best in the U.S. for SCI. I needed surgery on both of my ischial tuberosities. The first surgery was completed, and I was flat down. Shepherd had a strict protocol, and they knew exactly what to do. I got through it as best I could — a lot of visitors kept my spirits high. I then had the second surgery and again remained down. Hindsight is 20-20, but I should have realised that my body could not handle being prone for so long. I developed gangrenous bowel and was rushed into surgery. I barely made it. I remained hospitalised for half of the next year during which I was on a ventilator for months. I know how lucky I am to be here to talk about it. Those pressure ulcers nearly got me. I left Shepherd in April, after arrival in October. When I got home, I was weak, on oxygen, and had resigned myself that I would never make it back to work as an attorney again.
Finding the wound avoidance formula
Slowly, I gained my strength back. This time, I was determined to get it right. I got a full evaluation of my chair by a seating specialist and a custom-made Roho. The Roho has an area that is open under my right ischial tuberosity to create a floating effect and therefore avoiding any pressure. My chair has trunk supports and tilt and recline. As I got stronger, I was able to return to some level of normalcy, but I continued to watch my wounds like a hawk. There were ups and downs; at one point I developed a major wound, but it miraculously healed with my new nutritional regime and willingness to take breaks during the day. I finally had access to a fantastic wound clinic with a skilled nurse practitioner and staff. The right supports were around me and I was able to stave off serious pressure ulcers. But they were always on my mind and never completely gone.
So, what can you learn from my experience? Here is my advice.
- Get a pressure mapping yearly, your body changes.
- Continually check the air in your cushion (unless you have a use a motorised pressure changing cushion or other technology that alerts you when the air pressure is not sufficient).
- Routinely tilt and recline, to reduce the number of hours that you are upright. Alternatively, take a nap/break during the day. Your need to “stay down” for some part of the day is also affected by your age. Also, while I am not a candidate, some with SCI may use a standing frame to release pressure.
- Stay current on the latest technology for pressure ulcer prevention and the surgery/treatments available if an ulcer begins to develop. For instance, I met with a plastic surgeon who does stem cell surgery on pressure ulcers; if my old skin starts to act up that is where I’m headed. It is covered by insurance.
- Act quickly! In my case, anytime I have even a tiny skin issue, I rush to the wound clinic. In my experience, they are always aware of the latest treatment regimens. After 37 years, I need cutting edge, early interventions.
- Eat a diet rich with protein and be open to taking vitamins and other supplements. The body is a machine and as someone with SCI ages, it’s really hard to eat enough of anything to get the right amount of protein and other skin related supports. Use supplements as needed (and advised by a good nutritional specialist). As an example, I put collagen and protein powder in almost everything I eat or drink. Again, this should be done under the guidance of a doctor. My primary care doctor is trained in functional medicine and uses a mixture of Western and Eastern treatments. In many cases, especially in the US, the supplements are expensive and not covered by insurance. This can pose constraints on individuals with limited income. On the flipside, they are often less expensive than a wound treatment.
There is no surefire way to look back and say, “If I had done this, I could have avoided pressure ulcers completely.” Much depends on each individual and the supports available. There are logistical problems, too. Many centers are booked up for weeks before you can schedule a pressure mapping. Other newer technologies for pressure ulcer relief may or may not be covered by insurance. Regardless, vigilance is a must. A pressure ulcer can be a ticket to a long dark road. It is wisest to do whatever you can to avoid skin damage and in the event that you get a pressure ulcer, make sure you move swiftly to attack it with everything you’ve got.