Elective Amputation Part III - The Physician and Saving Lives

I have written a couple of blog posts about elective amputation. The first is here and the follow-up is here. This will be the third in the series, and one that I find disheartening and disturbing to write. It concerns physicians who only see amputation as dismal failure. Additionally, if it must be undertaken, then as much limb as possible must be saved, even if it means taking half a foot and rendering the patient barely able to ambulate, much less enjoy life again. Let me say here and now that partial foot amputation is pure butchery, simple as that.

I want to mention there are physicians who know amputation is often the best choice for their patient. For a person who first faces limb loss this can be a traumatic experience and the word "amputation" tough to hear. Since they have not had time to process the situation or arm themselves with knowledge about the procedure, they often make a choice they may later regret. I recall an article about Dr. Tom White, a national class runner and physician himself, when faced amputation after an accident exclaimed: "Doc, I'm a runner!...Save my foot. Please save my foot!"

Dr. White would go through many years of pain and suffering to come to the conclusion that amputation was the best possible outcome for him. He simply did not know, or was able to understand, that loss of limb does not mean loss of life, it preserves and can enhance life far beyond anything one can imagine.

My surgeon, Dr. Blake Ohlson, never made me feel like the doofus I can be on occasion. The fact that I thoroughly researched the history of the Ertl procedure, knew that with a prosthetic foot I could run again, and, I think, my outlook was positive with an intense desire for success, made us know this needed to be done. I did not want it, but not having it was a far worse alternative.

I know my decision has helped others struggling with this choice - for some it may seem like a no-win situation. Far from it, this is NOT true and there are many stories of miraculous success that stand as solid proof. The typical story is not that a person regrets having the amputation, only that they regret not having it sooner.

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Kelly Luckett, multiple Boston finisher, ultramarathoner, mentor

For once in my life I feel I have made a real difference not only in my own life but in others. Although I knew failure - or worse - could befall me, I don't think I ever dwelled on the negative. There is no place to go but down doing that, and I found myself pleasantly amazed how a positive outlook bred more positive results. No matter how bad things may get, gazing into the darkness holds no hope of coming into the light.

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Scott Rigsby undergoing reconstructive foot surgery

Scott Rigsby lost one foot at the time of his accident, then chose elective amputation when a reconstructed foot proved to be nothing but a painful remainder of the accident and loss of his athletic ability. Many surgeries and recoveries racked with infections had no end in sight; he then chose what some surgeons would consider unthinkable, to have the foot removed.

Scott then did the unthinkable, becoming the first bilateral amputee finisher of the Hawaiian Ironman competition.

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The driving force behind this post are people who have contacted me through this blog who are researching and deciding on elective amputation. In most cases these folks have far worse injuries than mine; they are in excruciating pain and on high levels of painkillers/narcotics just to get through the day. Some are unable to work or enjoy any semblance of a normal life and personal relationships are under pressure. Several have had many surgeries only to face more and more that will not ease their pain and possibly/likely increase their discomfort. Every surgery is another chance for complications to set in from infections to more tragic results. I know suicide has an appeal to some, to end the pain and suffering at the hands of...yes, the one who has sworn an oath to do no harm.

The absolute tragedy and inexplicable behavior by some - not all - physicians is telling a patient that they are crazy to want amputation, in fact they need to have a psychological evaluation for suggesting such a thing. The patient should want 10, 15, 25 or more surgeries to "fix" the condition that will never be corrected, never mind each surgery brings risks as well as trauma to the body and spirit. Ask these surgeons if they can "fix" the patient and you will get sidesteps and indeterminate answers at best. They cannot promise on any level that anything approaching normal mobility will be possible when dealing with crushed feet, missing heels, mangled limbs.

Certainly an able-bodied person without any injury who wants amputation as some sick form of mutilation needs to be evaluated and possibly committed, but hopeful anyone with an ounce of common sense can differentiate this from a person in an aircraft crash and a damaged leg, or suffering from a nerve condition where they feel nothing so they unintentionally destroy their legs as their feet flop about.

The patient is to be satisfied to live a life in wheelchair or scooter, on crutches or a walker, in unwieldy braces or orthoses, all to save a useless and painful limb because the physician believes this is the best possible outcome. It is the doctor's implicit belief that being on high level of pain medication is the best protocol, the side affects and addiction are acceptable results, and that loss of a limb is the same as a lost life.

Placing the patient in a brace or orthosis will cause the body to compensate, putting inbalances in place that can and will cause additional problems to the "good side" in a unilateral patient. As the "bad side" atrophies it may take years to recover from the losses. Then even if amputation were to occur the patient might have problems caused by the efforts to stave it off in the interest of protocol. Note I am not talking about minor injuries, but patients who have had significant trauma or other condition that has caused them to seek amputation as relief. My initial accident was not a cause for amputation at the time, it was the effect of arthritis destroying my joint that ultimately lead to my decision.

As living, breathing truth, I am here to tell you it is wrong and borders on incompetence for a physician to insinuate that someone with a damaged limb is crazy to want to discuss and have amputation. A loss limb is not a loss of life, far from it. Done under the skilled hands of a talented surgeon, an amputated limb is often the best possible outcome, for it ends the life racked by pain. Narcotics and their destructive properties to organs are terminated. Finally, with a modern prosthesis, there is little to nothing a person cannot do. Mow the lawn again? Check? Play in an orchestra? Check. Go snowing boarding or skiing? Yep! Golf, scuba dive, drive the car? Check, check, and check.

Run a marathon? Become an Ironman? Climb Mt. Everest? All true.

Cadie Jessup (center) in mountain climbing training

So who is the madman, the physician who would sentence - and I mean that literally - their patient to a life of surgeries, to pain, to narcotics, to lack of mobility? Or is it the patient who wants an end to this madness and to have their lives back, to live again? Who indeed.

Physician, check your premises. If you are unable to help your patient, refer them to someone who can. It may be ironic, but losing a limb may be gaining a life. This is particularly true for anyone who wants to be active again, who has dreams and goals as a human being, who knows every life is sacred and none are to be flippantly tossed aside into the 'good enough' trash heap of the uncaring. It is not my intention to be contentious here, but having seen and heard from people in constant pain because their doctors refuse to help them causes me to bring this into the open.

There is music to be played, races to be run, mountains to be scaled, life to be loved.

And on this Father's Day, catch to be played with a child someday.

Let them live.

The unstoppable Jason Gunter

All American 5K 2011 - The Race

All proceeds went to IFOPA

Just one week after attending the 2011 Getting2Tri National Paratriathlon Camp, which will have a separate blog post soon, we drove back to the Atlanta area for the All American 5k. This race honors local heroes, the prior year was run to benefit Dan Berschinski, and this year's race honored our dear friend Ashley Kurpiel.

We took a circuitous route to Peachtree City (PTC) for the race, through Buford Georgia to visit  my prosthetist, ProCare, for a quick checkup and to discuss a new walking prosthesis to replace my original, thermoplastic test socket. (This is the same foot I ran the Cooper River Bridge Run in 2010.) Jennifer had not seen their facility and I was anxious to show her where the magic happens. Scott Rigsby, who is a friend and mentor to me and many others, happened to be there and we got to spend a few minutes getting reacquainted before we met with Stephen Schulte and his staff to discuss our plans.

Lauri Buell, Ashley, Bob Truhe

We then made the dash around Atlanta to PTC, the first visit there for either of us. Fortunately we weren't held up too long in traffic and would be able to have dinner with Carol and Ashley. As we parked and got out of the car, we met the race director who was just leaving. She asked if we were runners and told us about the race, which made us smile to tell them we had come to PTC for this very event.

Although this was the first time we met Ashley's adoptive mom, to me it seemed we were old friends with much catching up to do. I'm always impressed with all the people Ashley knows, I am quite certain if she went on an excursion to the north pole, she would meet someone she knows there. "Mr. Claus, your friend Ashley has dropped in to see you."

PTC is perfect for Ashley, because the entire community is built to get around in golf carts. She drives like a Formula 1 racer, in fact, "some say The Stig learned to drive from Ashley." The place has a rolling terrain that would test these lowcountry runners as well as some unexpected cart tunnels we would run through. The race day weather forecast was not horrid either; although warming up it would not enter the stifling category.

From left, Woody Thornton, Kate Tamblyn, Eileen Tamblyn, Brian Johnston, Ashley Kurpiel, Me (tall one), Brennan Johnston, Michael Thompson

Woody is a friend of Ashley's and a bilateral amputee; he told me his training had been minimal but ran his second fastest 5k today. At Getting2Tri camp, I was Eileen's volunteer handler. Eileen had been a marathoner before she lost her limb, and is now on her way to becoming 26.2er again. Brian and Brennan ran as a team of sorts; Brennan's prosthesis was causing him some issues so Brian hosted him on his shoulders and they finished together. Michael, also of PTC, did a run/walk.

Master of Ceremonies Ashley at starting line

There were about 400 runners and walkers for this race, the start being near "The Fred" or the Frederick Brown Junior Amphitheater. We received a choice of tee shirt or hat, I opted for the hat as I plan to make future use of it. I felt good during my warmups, Jato was responding  nicely. My only angst was how I was going to handle any steep hills; for the most part none were too bad but the tunnels were another story.

Carol, Ashley & me

After a beautiful rendition of the National Anthem and a few words about the course, we were off. One of the steeper downhills was here at the start; then a right turn and an uphill. I was running comfortably; I can usually tell what kind of race I will have by a quarter mile. This did not feel like a PR day although my training says I am ready to do that now. Mile one was 7:53 and would be my fastest. Mile two was mostly cart paths, twisting and turning with many creases in the asphalt where tree roots were trying to push through. I had to pay attention to my steps and adjust my gait often.

I don't recall exactly where the tunnels came into play, but I was not expecting them. The cart paths go under some roads, and coming from the light into the darkness made visibility difficult. I slowed to a shuffle because I could not see the footing at all, and was taking no chances on falling and injuring myself. I finished mile two in 8:11, a bit surprised it was not slower but mile 3 would fix that.

Indeed I was slowing as my body and the morning heated up. I was damn happy this was a 5k and the end was near (!). There was one short, steep uphill near the end of the mile that nearly convinced me to take a couple of walking steps, which I mightily managed to resist. Finally mile three and I had slowed down to 8:27 pace and glad we only had a tenth of a mile to go.

I ran strong up to the finish line, seeing Ashley on the left helped remove the running distress. I glance at the race clock and I see 25:31, 25:30 on my watch. The PR would have to wait for another day. Once I recover a bit I go watch other finishers with Ashley and wait for Jennifer. We see Woody finish, very strong on his dual Cheetahs a la Pistorius, and under 30 minutes. Jennifer comes in a few minutes later, a solid effort, and we head back to the start area.

What did we do before smartphones?

We enjoyed getting to talk to some of the folks we already knew and getting to know new friends too. Plans were made for the after party party, which would be a nearby restaurant for breakfast. The awards were in 10 year increments, and for us older, wiser ones this usually means an unsuccessful trip to the hardware store. Jennifer had a great showing at 11/28 in her AG, and I was 8/21 in mine.

Unbeknownst to me, there was an additional award for the "fastest inspirational runner." Yes, my throat grew tight and my eyes a bit damp when my name was announced. I did a decent good job holding it together as my dear friend and source of bright inspiration Ashley Kurpiel handed me a trophy. Well, well.

Michael Thompson and moi, 3 legged race?

We took lots more pictures and chatted until nearly everyone was gone, then we headed out for breakfast. Jennifer and I sat at the end of the table with Carol and heard more of Ashley's journey through her amazing life. In my most humble opinion, this woman's life would make for one incredible movie, although it would be a monumental task distilling it into that format.

Carol spoke with almost reverent respect for someone who has worked tirelessly and with utmost compassion for FOP kids, Dr. Fred Kaplan. His efforts may soon be bearing the fruit of clinical trials that may derail FOP in its tracks; a scientific paper is here describing the research. It is not the cure but it could stop the formation of bone growth in the individuals who have FOP.  

Wow!

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Jennifer and I also had dinner with Carol and Ashley on Saturday.  Afterward Ashley became our tour driver as we hopped in the golf cart for a ride to the lake to watch the sunset, hence generating my earlier comments about her professional driving skills. It was a beautiful evening, the sky gorgeous in the changing light, a perfect ending to a perfect day.

Sunset at Peachtree City

Time and time again I have thought...what if...what if my life had been different, on that morning so many years ago, what if I had not run after the bus, or stood in the other line. If I could go back, change my life's path, and never experience all that I have experienced? 

That long road would end here, at this sunset, with friends without equal.

I would not change a thing.