Shaun was fortunate: they managed to avoid amputation but the infection damaged so much bone and tissue that he walked with a limp and could no longer ride a bicycle. His football career was over. One would think that having a very important mother on your side would lead to immediate discovery of what caused this tragedy. The staff tested every object and every person in the operating room and never did find the source of the bacteria. The clinical best guess was that a dye injection for an x-ray the day before surgery may have been the problem.

Shaun suffered with a very stiff knee with very little range of motion for six more years. In 1989 he found a US ski team doctor who cleaned up the damaged bone and scar tissue enough that he could jog and ride a bike. In 2005 he was letting his kids ride his ankle like a horse when the weakened knee fell apart. This time repairs were out of the question and a full artificial knee was installed. Shaun knew what I had gone through the year before and elected to have full decolonization therapy before his knee replacement to reduce the risk of another infection. It may have been one of the factors in his successful knee replacement, but sadly he developed a staph lesion on his nose after the operation that required more IV antibiotics.

Two years later, his good left knee developed a cyst that required surgery to remove. Again Shaun prepared for surgery by going through two weeks of decolonization therapy. This time the surgeon avoided an infection but nicked the bursa in his knee which required yet another surgery in an ambulatory surgery center to repair. This minor repair caused Shaun’s third staph infection. Unfortunately, the PICC line that was installed to administer antibiotics caused a blood clot which put him back in the hospital. The damage to his left knee from his third infection led to a partial left knee replacement in late 2007.

Shaun’s right knee now has a plastic button that has come loose and is putting pressure on his nerve. Like me, Shaun is very fearful of going back into operating rooms of any kind until the problems associated with infection prevention are brought under control. Perhaps Irish guys like Shaun and me should be contraindicated from having surgery.

1. Attended a Colorado Patient Safety Coalition meeting in hopes of finding comparative infection rates for Hospitals.  Result: No information was available.
2. Read all the current guidelines from SHEA, APIC, and CDC.  Result: Good knowledge and considerable increase in fear.
3. Met with my surgeon and demanded a prescription for decolonization therapy.  Result: Surgeon recommended an infectious disease doctor who put me on a decolonization program two weeks prior to surgery. I used chlorhexidine shampoo, mupirocine in my nose, and oral antibiotics.
4. Took vitamin E for three months prior to surgery.  Result: ??
5. Requested an 8:00 AM surgery time.  Result: Ignored.
6. Got a really short haircut and shaved my upper body with clippers two weeks prior to surgery.
7. Increased sleep from 7 hours/night to 9 hours/night.  Result: Got very hard to sleep the night before.
8. Prayed constantly.  Result: Worked.
9. Negotiated with surgeon to include vancomycin as the prophylactic antibiotic, full air-supplied suits for the surgical team, no shaving, double gloves.  Result: Doctor did all but the suits.
10. Wrote, “Please, please, don’t infect me,” across the doctor’s informed consent form.  Result: Surgery team chanted, “Let’s get it right this time,” on the way to the OR.
11. Post-op doctor put me in a private room (probably to keep me from talking to other patients).  Result: Big bill ($900) to fight about.
12. Continued taking vitamins and avoided taking showers until stitches were removed.

But the ultimate question remains. If a patient insists on treatment that his doctor disagrees with, is he guilty of practicing medicine on himself? If something still goes wrong, who is the responsible: the doctor or the patient?

There is a very interesting medical term called “conservative treatment,” generally defined as the plan that uses the very least amount of medicine to create the highest probability of a good outcome. Doctors don’t always choose the conservative approach. Sometimes they choose the most expedient plan, the most profitable plan, or the really new high-tech plan that they are dying to try out. One question a patient should always ask multiple doctors is, “What is the most conservative treatment plan for this condition?” They may not agree with each other but you will gain a great deal of knowledge on the range of options available.

Kerry O’Connell

In the past two decades we have witnessed the corporate takeover of healthcare. Interestingly, corporations are very much like bacteria. Both exist for the sole purpose of growth and survival. The means for corporate survival has always been and will always be profitability. While some will deny this fact, and others will spend their lives trying to get corporations to act morally, the truth is that profits will always take precedence over quality of care. Consider the two things that you will never hear come out of a healthcare CEO’s mouth:

1. We made too much money this year!
2. We lost money this year but that is acceptable because we didn’t harm any patients!

The plan to win the war is simple. Make infection prevention highly profitable. Currently this nation spends about $4 billion dollars a year treating two million infections which at 7% profit equates to about $280 million dollars a year in healthcare profits. Most experts would agree that if we spent that same $4 billion a year on prevention measures, infections would be nearly extinct. The problem is that neither insurance companies nor CMS would pay for $4 billion in prevention measures; thus the resulting $8 billion dollar swing from revenue to overhead would bankrupt a lot of providers.

My solution is to quit paying providers an average of $2,000 per patient to treat the unlucky souls that get infected, and instead give them a $25 bonus for every patient they don’t infect. They then get $5 billion in revenue but now it is distributed to the providers with the best rates instead of going to the facilities with the worst rates. Infections will become extremely hazardous to the bottom line. Corporate healthcare, like bacteria, will quickly adapt, morph, and change into mean, clean, bacteria-killing machines. The providers that I have proposed this to have an interesting response: “But would we have to share the bonus with the doctors?” Again the profit-centered culture. The right answer is “Yes, of course,” as doctors (especially surgeons) are integral to stopping infections.

No one will argue that hospitals are grossly understaffed in infection control, that screening takes money, and that isolation wings cost big money. Give them the funds to fight the war effectively and quit rewarding them for failures!

Kerry O’Connell   4/14/08

Added revenue from additional treatment $25,000 to $250,000
Added profit from additional treatment $1,750 to $17,500
Patient census goes up five to 20 patient days
Added work for infectious disease doctors and lab specialists
Slim chance of a hit on a public report in 27 states for a few procedures
Greatly added revenue for pharmacy
Might cause a move from a two-patient room to a private room (usually compensated)

Staff:

Possible guilt feelings for an individual or team
Usually don’t know who caused infection
Usually don’t know which patients received an infection
Not recorded in any performance reviews
No change in compensation
Major headache for infection control professionals

Patient:

Significant chance of death
Significant chance of permanent disability
Full emotional burden
Full physical burden
Full financial cost (sometimes bankruptcy)
Highly likely loss of workdays
Haunted by fear of recurrence
Greatly increased chance of infection in future surgeries

Consequences are one of the few events in life that, depending on context, will produce either action or apathy. Healthcare is learning that one of the side effects of infections is an ever growing, extremely passionate family of infection victims and survivors who will no longer accept infections as an inevitable cost of treatment.

Kerry O’Connell, 2011

It took Doctor Number 1 and three nurses in Halloween clown costumes every bit of strength they had to pull my arm apart so the dislocated elbow would slide back into place. Once reduced, the arm really did not feel bad at all. They took me home and I cleaned up the painting gear and went to bed. Sunday morning I felt great and managed to take the back door off, change the hardware, and rehang it with my arm in a sling. Late Monday morning I went the big ortho clinic in Golden that the initial doctor had recommended. The doctor looked at my x-rays, then said I needed to see their hand specialist the next day. Seemed odd that a shoulder specialist could not fix an elbow but a hand guy could. The hand specialist (Doctor Number 2) said my radial head was cracked and might need to be cut off and a titanium implant installed. Didn’t sound too bad:  six weeks of recovery time meant I could still ski this winter, though house painting would have to wait until spring. On Friday, November 12, as they wheeled me into the operating room I wasn’t the least bit worried. I woke up a nanosecond later in a dark patient room with tubes everywhere, a metal fixator contraption on my arm, and massive pain throughout my arm and head. Doctor Number 2 came in looking extremely ill. I asked him how it went. He said, “Okay.” I told him it looked like they put the maximum amount of hardware on me; he said, “Yeah, we had to.” Then he left without another word. The next morning I discovered my wrist and fingers were totally limp. Four and a half months later my third doctor would discover that the bone drill had pureed four inches of my radial nerve into mush.

Surgery Number 2 in April was a futile attempt to splice three parallel pieces of the spaghetti-size sural nerve from my left calf into the four-inch void in my radial nerve. We knew it had less than a five percent chance of working, but prayed for the best. After seven months of physical therapy from the most amazing therapist in the world, I became impatient and considered elbow capsulectomy surgery to restore range of motion in my very stiff elbow. In the early morning of August 17^th I spent two hours on top of Shrine Pass discussing with God my medical options. I had a strong feeling that I should not go ahead with this procedure, but somehow my faith in doctors was still stronger than my faith in God and I went full steam ahead. Not surprisingly, Surgery Number 3 resulted in a very serious MRSE Staph infection. It took two months, four more surgeries, and many gallons of vancomycin to kill the bacteria in my arm. He had to take out my titanium implant but at least I still had my stiff arm and limp hand.

By December, we were confident that the MRSE was gone and the nerve graft was not going to work. I read two textbooks and everything on the Internet on tendon transfers and negotiated which tendons to move with Doctor Number 3. By now, I was a highly informed but quite paranoid patient. On December 9th, I lay in the pre-op center so terrified that I could not speak. The physician’s assistant and Doctor Number 3 could not quite remember which tendons we had agreed to move. I handed them my spreadsheet, pointed excitedly, and prayed. God had finally tested me enough and allowed this surgery to work. I spent another four months in physical therapy and wound up with a 70% elbow and a 60% hand, which works pretty well considering that 10 of the 40 muscles in my arm will never work again.

I had drilled enough things in my life to fully comprehend how bone drills could slip and destroy nerves. Similarly, I had fought enough battles with mold in buildings to understand how difficult it is to control bacteria. Yet what completely astounded me was the medical community’s reaction when things go wrong. Taking responsibility is out of the question. The best they could muster was to weakly blame the fixator manufacturer and hospital staff while sending me truly outrageous bills. It appears that this profession, which was founded on love, has been totally consumed by fear and greed. In response, I started writing letters, giving speeches, and supporting legislation to try to remind physicians how to love their patients when things go wrong.

Kerry O’Connell   9/6/06

A laptop with WIFI is the patient’s best friend. After a week of every-other-day debridement surgeries, the doctors told me that they were going to insert a Groshong catheter into my chest the next day because vancomycin would eventually destroy the vein in my arm. That night I went to Groshong’s website and carefully studied the surgical technique manual. Bright and early the next morning the general surgeon came into my room and asked me if I knew what a Groshong catheter was. I said, “Yes, sir, I do!” then opened up my laptop and read him the list of 10 known complications and asked what he was going to do to prevent each one of them. Two of the complications he had never heard of, which would indicate that he may have never read the surgical technique manual.

The procedure went well, although when they took the catheter out a month later a felt ring slid off of the tube and remained in my chest. He said that it would eventually be absorbed by my body but three years later it remains a cute bump. That complication was not in Groshong’s manual.

By being a bit paranoid I forced the surgeon to slow down, think, and review the procedure in his head. I probably also made him worry a bit about what I might do if his surgical technique was less than perfect.

Kerry O’Connell, 2009

Then I awoke from dark dreamless Anesthesia sleep

Then the loud voices came back calling

Then the blurred images started floating by

Then I slipped in and out this new world

Then I could sense but could not feel

Then the pain returned

Then the muscles fired

Then the hunger consumed me

What world is this that I awoke to

Tis a world without trust

Tis a world without faith

Tis a world without honor

A world bankrupted by consent forms

A world of hungry superbugs that feast on my shattered arm

I thought they had a conscience but I was wrong

I thought they had a soul but how could they

A Corporation is merely a man made virus

A Virus bent on survival at any cost

Even if the cost is those who trusted them

My Nightmare continues 24/7

Lord how I wish I could dream again

But those unconscious hours are gone forever

But that was 2005 and this is Ten

The world has changed a bit since then

Today is filled with reports and initiatives

Today is talk of stimulus and recovery

Tis a world in search of hope

Yet hope lies not in Institutions

Hope lies not in Corporations

Hope lies not in Regulations

Hope lies in caring Nurses and Physicians

Who care enough to do it right

It took some time but I dream at night

I dream of a day not far from now

When infections only live in ancient poems

Kerry O’Connell, 2010

*****

Surgical Sex

Where else do strangers invade your body protected by mere millimeters of latex

Great is the hope that the brief intercourse will relieve the inner pain

But Surgery and Sex always have a price

The minimum price is a scar

The customary price is an infection

The maximum price is your life

So don’t engage in either lightly

One must always be willing to live with or die by the “unexpected outcomes”

Kerry O’Connell, 2006

I live in a jungle of pine trees at 8,500 feet above sea level, 40 miles southwest of Denver.

It is a very beautiful place, but every resident’s worst fear  is forest fires that can destroy your home and your view before you can lift a finger to stop them. This is a story of two radically different approaches to the problem of forest fires.

Joe was an engineer who built his dream home in a valley southwest of Pine, Colorado.

He fully recognized the danger of forest fires and applied his best engineering to the problem. For starters, he built his house out of concrete instead of wood. He roofed it with concrete tiles. As extra security he installed fire sprinklers on the roof in addition to inside the rooms. To feed the fire protection system, he installed a 10,000-gallon cistern and electric fire pump. Knowing that pumps are worthless when the power goes out, he installed a diesel-powered emergency generator. Joe’s insurance company loved him and gave him their lowest rate.  In the summer of 2000, the High Meadow Fire roared through Joe’s valley. Unfortunately the fire was so intense that it sucked most of the oxygen out of the air and Joe’s fire pump wouldn’t start. The intense heat radiated through his windows, setting the drapes and furnishings on fire. Joe’s dream house burned from the inside out.

My friend Rodney was a Cajun surveyor who worked for us back then, who also built his dream house in the little town of Westcreek. Now Rodney had spent a little time in engineering school but never quite graduated. He was a very clever, very likeable Cajun who was positive no matter what crisis was brewing. In 2004, the Hayman Fire came roaring through the Platte Valley. Rodney rushed home as soon as the fire broke out. For the first two days he ran bulldozers for the county, building fire lines. On day 3 the federal firefighters showed up in force to try to save the day. They immediately shut down all the county operations. Rodney was dejected but not beat. His wood frame house sat high on a hill with a great view of the entire valley, so Rodney volunteered the use of his home as a federal fire command center. For the next three days Rodney fed the firefighters all the steaks and beer they could eat. On day 7, the wind turned towards Rodney and he was ordered to evacuate for the third time that week. On his way down the mountain with his valuables and animals in his truck he met a large crew of federal firefighters. They stopped briefly and said, “Don’t worry, Rodney. We will save your place!” When they got to Rodney’s house they set a backfire on the uphill side and circled the downhill side with their trucks. Rodney only lost 13 trees. His neighbors weren’t so lucky.

After three years of medical research I have come to believe that a patient’s best tool for receiving high-quality care is to treat your medical providers as my friend Rodney did. Get to know them before you go in for surgery, treat them with kindness and respect, put yourself in their Crocs, and watch out for their needs. Imagine how difficult it must be to face a steady stream of complete strangers every day with a bewildering number of serious health problems, knowing that your simplest mistakes can cripple or kill them. When you see something they might be doing wrong, gently remind them in a kind way. Much of what separates good care from poor care is how much time the staff is willing to give you. Being human, they will naturally spend more time with the fun, kind patients than with the angry, bitter ones.

One of the benefits of working on Colorado’s infection reporting committee is that I get to know the top infection prevention professionals in all the major hospitals. I cannot think of any better friends to have when you are rolling into an operating room. Patient safety is far more than systems, slogans, procedures, and checklists. It really comes down to two people putting aside their own interests and finding the courage to help cure each other.

Kerry O’Connell, June 2008

“Compassion is something I have a lot of, because I’ve been through a lot of pain in my life. Anybody who has suffered a lot of pain has a lot of compassion.”

                                                                                                                – Johnny Cash

Over the course of history our societies and religions have sought to abolish human suffering. But without pain and suffering, would compassion exist?

When you think about it, suffering comes from four primary sources:

1. Our fellow humans                          Crime, war, neglect, poverty, starvation.                       (the largest category)

2. Our physical limitations                 Accidents, illness, and the inevitable                                                                                                  deaths of those we cherish.

3. Nature                                                Natural disasters, extreme weather, an                                                                                            ever-changing planet.

4. Ourselves                                          Desires, fears, doubt, selfishness.

Buddhists believe that through devout Buddhist practice one can eliminate suffering. Imagine a world where we all grew to that level and wiped out our evil deeds and inner demons. It would be a peaceful, amazing place but we would still have suffering from our physical limitations and nature. Suffering is an integral, unavoidable part of life. Evaluating our lives (or God) based on freedom from suffering is very similar to evaluating our children’s schools based on the quality of their recess periods. The most important, most unforgettable lessons in life are a direct result of suffering.

Dr. Viktor Frankl developed his theory of logotherapy while suffering in a concentration camp. His profound belief was that we can achieve true meaning in life in three ways: through great love, through great work, or through great suffering. Personally, I believe that great suffering creates great love/compassion which in turn produces great work. Thus some are blessed to experience all three in their short time on this earth.

Both Christianity and Buddhism share the concept of renunciation: that to advance to a higher spiritual state and eliminate self-inflicted suffering, we must renounce our earthly desires, possessions, and ways. What they don’t mention is that in the aftermath of great suffering your old desires and life become quite meaningless all by themselves and you become obsessed with a need to help others, an all-consuming compassion. It is a great gift from God that allows us to heal ourselves and a very small part of the world around us. Thus a champion, an activist, or an occasional fanatic is born. It is a very meaningful vocation, but being the change you wish to see is not easy. Changing established norms is frustrating and often depressing when progress is ever so slow. Witnessing cruelty and indifference is much harder for a compassionate being. Well-meaning friends and relatives advise you to just get over it and return to your old life, not realizing that God has sent you down a new one-way path and U-turns are not allowed. Yet infrequent rewards do come at the most unexpected times, from the most unexpected people.

To confirm my thoughts I drafted a simple “test question” and sent it to some people I have met who have profoundly suffered in a wide variety of ways. The question was, “What differentiates the inspired wounded from the bitter wounded?” These are their amazing responses:

Helen from North Carolina:

“Interesting, I don’t think of anyone I have met as bitter.  Some of them are very cynical, however.  Almost always, that is based on experiences of being lied to and deceived in a manner that is quite calculating.  Some of them are profoundly disabled and waiting to die from a system that seems indifferent to their injuries and refuses to give them meaningful medical treatment.

That’s what I see.  It’s very frightening.  And yet I don’t see anyone who has given up on the hope – however faint – that someday things may be better.”

“It would be hard to do anything else,” says Helen of her ongoing patient activism. “You’re sort of driven by the Furies.”

Kathy from New Zealand:

“What differentiates the Inspired Wounded from the Bitter Wounded?…For me it was self love – the decision that this did NOT have to be a tragedy, that I could create something positive out of it. From that it simply followed that bitterness would eat ME alive and would be certain to make it a tragedy.”

Kim from Minnesota:

“I loved the inspired wounded vs. bitter wounded.  I often ask myself this too. What makes someone bitter as is evident by my mother-in-law.

For me, it’s my strong faith.  I remember sitting on the floor after Woody died grabbing my heart crying over and over, ‘God take my pain and use it.  It does me no good.’   Never did I imagine this was the course that it would take, but it has helped me tremendously make peace with my husband’s tragic death.

Also, when we were throwing Woody’s ashes out overLake Michigan, a red bible with gold letters, ‘The Holy Bible’ floated right as my brother-in-law and I were standing at edge of the boat wondering how we got here.  Ever since then, I have to believe there is a greater purpose for my life (and Woody’s death).”

Neil from Colorado:

“Here is my best shot on this question. The inspired wounded have a reason for living.  They have found a context for their suffering which gives their lives meaning.  Their suffering is not in vain.”

Nicole from Colorado:

“Personally I believe that both the inspired wounded and the bitter wounded share the same amount of mental and emotional intensity, however I think that this intensity originates from two very different sources.

It seems the inspired wounded go through a mental and emotional process that helps create an attitude where they no longer view their selves as a useless victim and now see their selves as a representative of suffering who has overcome such pain.  With the strength and sense of fullness and I emphasize fullness because they elicit an understanding of nobility which allows them to motivate change in others who have faced tragedy.  They can guide people to a path of reverent emotions.  Whereas, the bitter wounded draw from a mental and emotional state of emptiness that essentially impairs personal growth.  They feed such perceptions that they lose sight of self worth and become unaware of how valuable they could be to others.  While remaining in this state of selfishness they slowly self destruct.

I think it’s safe to say that when one does undergo an experience of affliction and has to endure suffering you should view it as a building block in life, a new phase of existence that is just beginning.  Not seeing it as leftover pieces of ruin from your once sound entity.”

Susan from Chicago:

“I agree with all of the comments and would like to add that I often see ‘productive’ patients as well as ‘destructive’ patients.  I believe part of the differentiation is the availability of pathways to patients to make a difference.  I have seen patients evolve from very angry to productive when given a chance to be involved in creating solutions or even when they get a chance to tell their stories.  Our system is so very closed that it breeds patients who get stuck in bitterness.  So, I am hopeful that we can all together co-create a healthcare system where patients are indeed welcome to participate.”

Mathy from Maryland:

“The Inspired Wounded takes what God has dealt him/her and moves forward. Although it is too late to change the life direction of the wounded, that person moves forward in a proactive way to ensure that others will not be subjected to the same pain. If there was no warning prior to the person’s pain or loss, then that person will go to great lengths to prevent the same wounds from happening to other innocent people by making sure that their warning is heard loud and clear by as many other people as possible. The bitter wounded take a ‘Poor Me’ approach and either do nothing, withdrawing from the world as they knew it, or get by on the sympathy of others. These people never get over being the victim and want to be pitied, accepting that change will occur because they have been wronged, but make no personal contribution to improve the atrocities. They are correct in their assumption that life is not always fair, but do nothing to bring about positive change for themselves or others. They will frequently try to jump on the coattails of those promoting positive change and expect that glory. Their bitterness creates a downward spiral for others, not only in their immediate families, but in their communities. They may end up being alienated because no one knows what to say to them.

I am happy to say that I am an ‘inspired wounded.’ Nothing will bring back my little girl, but it feels good knowing that by being a voice, I have played some small part in creating a safer, healthier outlook for children.”

 Kate from California:

“Ordinary people can accomplish the extraordinary by focusing on what they have, not what they don’t, what they want, not what they don’t want and what they can do, not what they can’t.”

Diane from South Carolina:

“1)     The difference in my mind is simply getting to the place where you want to SERVE more than you want to stay angry!

2)      What helped me, was the fact that watching Willie die, was beyond my ability to fix it so to speak, all I could do was ask God to help him thru it peacefully and have someone there to keep him company – so that he didn’t have to cross that threshold alone. Willie was one of a kind.

Bitterness eats away at the individual(s) who is bitter about anything and everything; I don’t’ have time to be bitter, I still get angry at times, I still cry at times and there are times I want to break dishes or what ever – but my place is here on my knees begging my heavenly father to please protect the patient next in line right now.”

Michael from Maryland:

“Even the ‘inspired wounded’ have a measure of bitterness. The inspired are usually more educated on the cause and are therefore more focused on how to fight. Also, while I believe that the pain is always there, time helps make it a little more manageable. But even achieving great success in the fight does not remove the pain and some, sadly, will remain in their bitterness. There is much more that could be said on this profound question.”

*****

A year ago I looked at inspiration versus bitterness as an either/or situation, but after talking to many survivors I believe it is a process much like grieving that begins with shock, moves into anger, and eventually can become inspiration. It is not a linear journey as we often get into circular patterns of bitterness and inspiration. It is a very difficult journey shared with many others.

“People are wonderfully complex and absolutely unique, and thus work through suffering and loss in a wide variety of ways. There is no one right answer for it is a personal journey on a dark uncharted path without a compass or a guide. We all wander off the path but eventually we find the light.”

                                                                                                                – Viktor Frankl

Dr. Frankl also felt that the challenge in this life is to live our thoughts instead of merely putting them on paper. I assure you that the champion/heroes above do just that every day!

“Pain provides the opportunity for heroism; the opportunity is seized with surprising frequency!”                                     

                                                                                                              – C.S. Lewis

All-consuming compassion is all that really matters in this brief experience we call life.

Kerry O’Connell  1/28/08