Wound care in particular has been very trying for us. We're grateful for the help we've received, but I want to believe there is someone out there -- anywhere in the US -- who's doing more advanced care in the area of pressure ulcers. If anyone can highly recommend a gifted provider or clinic in the US worth reaching out to, we would be most grateful.
For one brief moment in the not-too-distant past – one bright, shining moment – I was convinced that I had this paralysis thing figured out. The paralysis itself was here to stay, of course, but I thought I had wrestled to the ground all the nasty ramifications of this scourge. I was just wrapping up an interminable regimen of wound care treatments and would soon be wound free. I had the right low air lost mattress to sleep on, no UTI’s or nasty spills or chronic shoulder pain or prolonged spasms in ages, and all those late-night dashes to the ER were a hazy memory. All I had to do now was minimal routine maintenance -- i.e., don’t get tipsy, fall over, and break my neck -- and I’d be flying.
This was magical thinking. I had lulled myself, if even for just a moment, into a dangerous state of complacency.
Soon a new wound appeared on the outside of my small right toe, which was irritating, for sure, but nothing to fret over. Nineteen more trips to the wound doctor would take care of that. Then one Tuesday, a virulent new infection invaded the toe, seemingly out of the blue, and within hours I was back in surgery, this time to amputate that toe. The bacteria had entered the bone tissue, a first step toward the dreaded sepsis. I was lucky they had caught it so quickly.
Then the real trouble began. A CT scan of the same leg revealed a dangerous narrowing or stenosis of my femoral artery – the big one carrying blood to the whole leg – leading to a near total obstruction of blood flow. The vascular surgeon said it in clear English: “You are a prime candidate for losing your leg…” Before he could do anything about it, I had two weeks to ponder how I had ended up here.
It didn’t take a medical degree to realize the many missteps that had led up to this crisis. When I left the hospital after first becoming paralyzed 23 years before, no one sat me down and told be the brutal facts about living with paralysis. No doctor, nurse, or therapist explained the constant threat of problem wounds in my lower body. Nor did they mention the inevitability of contracture, or the permanent shortening of the knee muscles, meaning your knee is forever bent. Nor did anyone hammer home maybe the most vital lesson: unobstructed blood flow to all paralyzed regions is the greatest safeguard against wounds that won’t heal and infections invading your body.
Why did this happen? Why wasn’t I exercising my legs to avoid contracture or stimulate circulation from day one? Why wasn’t I getting CT scans to measure blood flow in my legs every six months? Was I dealing with incompetent doctors or second-rate medical facilities? Hardly. All of this took place at Cedars-Sinai Medical Center in Los Angeles, ranked by US News as the 8th best hospital in the country. The problem was not competence. It was communication.
If my internist had consulted with the neurologist who had consulted with the vascular specialist who had consulted with the infectious disease specialist who had consulted with a wound care specialist on a daily basis, in one long, unbroken conversation, even when no crisis was apparent, then none of this would have probably happened. Easy to see now; not easy to see over two plus decades.
No doctor, however skilled or experienced or caring, is thinking about your health full-time. Few internists are experts in foreseeing the problems of patients with paralysis. Specialists in, say, vascular surgery or infectious diseases don’t spend much time thinking about orthopedic problems like contracture or issues of wound care. In fact, 23 years ago, wound care itself was small potatoes, relegated to nurses who picked it up willy-nilly, without formal training, and never the concern of plastic surgeons or other skin specialists who are very much involved today.
The best sources of what might happen to you and ways of dealing with it? Other people with paralysis. The best advice, and greatest amount of solace, I received about possibly losing my leg came from a friend who had in fact lost his leg under similar circumstances. He was living proof that there was life after amputation.
In the end, a procedure called an angioplasty worked and I didn’t lose my leg. That was a joyous day, believe me.
Even in the best of current circumstances in the US – I can’t speak for Finland or Norway -- you have only one principal medical adviser you can count on at all times, and that adviser is YOU. Or in my case, me. I knew experts at Johns Hopkins in dealing with contracture two years into my paralysis but hesitated to have surgery on my knees because I would be laid up for months and had no one pushing the issue. I’ve deluded myself for years in thinking I had wound care down but still struggle nightly with eliminating pressure. Of course, I never heard the words “arterial stenosis” until a month ago, but if I had done more research or asked more questions, I probably would have.
All of that is water under the bridge now. Fear of losing a leg is a great way of focusing the mind. Hopefully it is not too late to amend my own errors in self-treatment and to learn to anticipate problems long before they are manifest. Living with paralysis demands a boatload of self-discipline and mindfulness that I have yet to achieve. It is now at the top of my to-do list.