The good news: I don’t have urethral cancer. The bad news: My body has sprung a leak — a small stage II pressure sore erupted overnight into a complex stage IV sore. While all seemed well on the surface — even to home health nurses — undermining and tunneling had been doing its dirty work unseen. Many of you know the prognosis: months confined to bed, followed by flap surgery and more months in bed. So now, instead of worrying that cancer may kill me in less than a year, I get to watch my quality of life slip away, day by day, for several months.
Whoever came up with “bed rest” as a medical treatment? The same doctors who believed in bloodletting? Many of you know the effects of prolonged down time: loss of muscle mass and bone density, potential skin breakdown in areas other than the off-loaded sore, poor digestion, possible infection, diarrhea from IV infusion therapy, loss of income from missed work, and depression. Ironically, it’s kind of like chemo and cancer; if the disease doesn’t kill you, the treatment may.
But I am just pissed off enough to fight my way through it. Complex wound care is the neglected child in the health care family, with too few doctors practicing it, too few wound care nurses and clinics, and too few proven wound care treatments. It took me six weeks to get into a wound care clinic, another six weeks to be seen by a plastic surgeon, and I’m still fighting insurance to get an appropriate wound therapy bed. Meanwhile the threat of infection rises.
Fortunately, I have the support of colleagues on staff and a dedicated wife. With their combined experience and help, I will get through this latest health crisis. Healing a complex stage IV wound and keeping it healed is a marathon, and everyone who faces it needs a working support system, just like a marathoner needs those helpers along the 26.2-mile course who hand out water and snacks at strategic intervals.
NM’s senior editor, Ian Ruder, has been stellar in feeding me helpful info and encouragement. Richard Holicky’s article on how to survive longterm bed confinement [“Staying Positive: How to Survive Medical Complications,” April 2012] has given me hope. And United Spinal’s Resource Center put me in touch with Tricia Litzinger, wound care nurse and therapy bed expert, who is giving me an eye-opening education.
Prescribing bed confinement to heal complex stage III and IV pressure wounds can be challenging, says Litzinger, since no recognized standards currently exist for evaluating the multitude of mattresses and beds that claim to promote wound healing. The result is nurses and doctors often can’t distinguish between products that are rehab grade and others that are “pharmacy” grade — and insurance is slow to approve the most effective products, which are costly.
Currently the National Pressure Ulcer Advisory Panel is developing evaluation standards, a project that began way back in 2001. In the meantime, if you have a complex wound like mine and need help, contact the United Spinal Resource Center or send me a message. You will need all the support you can get in this marathon.