Do you remember when you were a teenager and learning to drive? Did you grip the wheel with sweaty palms? Did you look 15 times before proceeding through a four way stop sign? Did your instructor chastise you if you crossed the double yellow line, went even slightly over the speed limit or moved your hands from the "10:00 and 2:00" position? There were so many rules, protocols, to follow. It all seemed so strict and unyielding. We were taught that to ignore one of these many protocols would surely result in a horrible car accident.
So now how do you drive? Do you still keep your hands at ten and two or do you drink your morning coffee with one hand and hold the steering wheel safely with the other? Have you ever crossed the yellow line to avoid and obstacle or because the road was completely deserted and it just didn't matter? Have you ever gotten lost and went the wrong way on a one way street, just for a second, to avoid an unwanted highway or traffic jam? Do you still concentrate on driving like you used to or is it now second nature?
Whenever we are practicing something new and important, we must pay attention to the rules, abide by the protocols and allow the techniques we are learning to become ingrained within us. Once we have enough practice, once we can trust ourselves and our experience, some of the vigilance will relax and will we be able to move outside of the rules safely. This is true of driving and this is true of navigating the healthcare maze.
The Vigilant Stickler
After transplant, patients are given literally lists of things they should not do. That can range from eating salad to not missing a dose of immuno-suppresant medication. The farther out a person is from their transplant some of those rules no longer apply and there are some rules that never waver. Each center has their own set of rules and each patient evolves in their belief of which protocols can be relaxed and which ones must remain steadfast. It is personal discretion in many cases and there are some professionals who understand this and others who won't tolerate it. Those who are unable to see the fluidity of certain protocols, I call "sticklers."
Our lung transplant clinic is held on Friday mornings. I was considering the pros and cons of the Nissen Fundoplication and my physician and nurse practitioner invited me to meet with them on a non-clinic day to discuss the surgery. When I went to clinic, there were no patients there. The only people in the area were administrative staff and my nurse. I checked in at the front desk and the head receptionist handed me a mask. Wearing a mask in clinic is normal protocol but we are free to take them off when we are alone in our exam room, for example. The method behind the mask is primarily to prevent immune-suppressed patients from transmitting any bacteria or viruses to eachother while waiting to be seen.
I took the mask from her with no intention of wearing it. I was alone in the waiting area! At one point, before my nurse had come to talk with me, the head receptionist came over and snapped at me, telling me to put the mask on right now or leave. I felt the anger boiling inside but had no real desire to fight this woman. I recognized her immediately--she was a stickler.
I put my mask on, deciding this was not a battle worth fighting. Soon after my nurse practitioner walked in, sat next to me, and we began a lively discussion. Partly because I felt protected by her presence and partly because it's difficult to be heard under the mask, I pulled the mask down for our conversation. Outraged, the stickler came running over to us and yelled, I mean yelled, at my nurse.
"Vicky, if she does not put that mask on right now she has to leave!!"
Vicky looked shocked and replied, "But we're alone. There are no patients here."
"I don't care, Vicky. Those are the rules. She has to wear her mask in the waiting room!"
"Um. Ok." Vicky was stunned.
What we were witnessing was the most vigilant species of Sticklers, the kind that obey and enforce the rules even when the experts tell them it's not necessary. This receptionist was so entrenched in her firey dedication to protocol that she had no hesitation chewing out her superior in an effort defend the rules and get her way.
I put my mask on and Vicky and I exchanged bewildered glances. Vicky mumbled "That was so unprofessional. She just doesn't get it." So true. She didn't get it. She was so busy being a stickler that she had not taken the time to understand why the rules were in place nor had she given any thought to when it may be appropriate to relax those rules.
I suppose intellectually that I understand her position. She had been told to enforce certain healthcare etiquette and she didn't need to know anything else. However, her demeanor and her lack of common sense made me feel both humiliated and furious. Haven't I been vulnerable enough throughout this process without the receptionist yelling at me like a small child? How dare this person assume that she understand the finer points of post-transplant life, and ignore both my experiences and the expertise of my nurse? When it was time for the meeting, I was still shaking from the experience. Happily, I never saw this particular stickler again.
When I am being treated by interns, residents and sometimes even fellows, I affectionately (and privately) refer to them as Baby Docs. It may sound like a condescending term but I (usually) mean it purely as a term of endearment. I feel affection for Baby Docs because:
1. Many of them are close to me in age
2. Their demeanor can range from anxious to scared out of their minds
3. The newness of all they are learning and practicing is usually overwhelming
4. They work harder and more hours than any human should
In general Baby Docs seem to fear, above all else, "missing something." This of course makes perfect sense. Without experience as your guide, it is your responsibility to leave no stone left unturned. Some young healthcare professionals appear to have so much medical information crammed in their brains that they disregard the patient's input and focus only on the long list of possible (and obscure) illnesses the symptoms match. For those who cling to every detail, order every test and make mountains out of mole hills, I lovingly crown them Baby Sticklers.
Baby Sticklers, unlike Vigilant Sticklers, have the potential to be very helpful. One example of this happened to me a few years after my second transplant. I went to the emergency room because I had a very high fever and aching in the joints. Normally, I am familiar with my body's aches, upsets and fevers. This day, however, I was at a loss because I had never felt quite like this before.
At the ER, I was seen by the intern and the resident. They asked me the usual 10,000 questions and threw in a few more due to my unusual symptoms. CF related arthritus, a virus and rejection were all brought up as concerns. Eventually, my transplant doctor arrived and, while puzzled, decided to treat it with IV antibiotics, just as we would have a normal CF exaserbation. I was to be moved to the Pulmonary floor, get a PIC line and remain inpatient for a few days. It was all quite routine.
Shortly before I was to move upstaires (which in hospital time is a few hours) one of the Baby Docs came in with his eyes shining. He sat down next to me and said "You said you walk dogs for a living."
"Have you had any tick bites lately?"
"Actually, yes. I pulled a tick off about a week or so ago."
With that this Baby Doc stood up and, like a sceen from "House," he whispered "yes" while making the fist-elbow-to-side victory gesture. Because of the extensive history he had taken, his fresh ears and his tendancy to be a Baby Stickler, he had found the diagnosis--Rocky Mountain Spotted Fever. I went on oral antibiotics and recovered within a week.
While Baby Sticklers can be very helpful, they also have the potential to drag things out longer than needed and may have trouble letting things go. This next story is an embarassing one to tell, but it's the best example I have of the Overly Cautious Baby Stickler.
One day during the time before my second transplant when I was very sick and had only about 10% of my lung function, I was feeling uncomfortable. I felt as though I was more short of breath than usual so I turned up my oxygen. Later, I felt even more short of breath and turned it up again. This pattern continued through the morning. By the afternoon, I was practically gasping for air. I called my parents and they rushed over to be with me. I tried relaxing, changing positions and turning the oxygen up some more. I had gone from 2 liters of O2 to about 10--that's a huge jump. By mid-afternoon, we decided to take me to the ER. I couldn't walk on my own at this point.
When we got to the ER, there was a long wait and I sat in the wheelchair thinking "This is it. Today is the day I leave this earth." I was a jumble of emotions but mostly worried about my parents. When they took me to the back, I was met by a young resident, new to the transplant team. In retrospect, she knew what was happening and was very kind in the way she handled it. She simply said "Tiffany I want to try and turn the oxygen down a litttle bit and just see how you do, ok?" This made me very anxious but I agreed. Within minutes, I was no longer gasping for air and my breathing was as normal as it had been before the morning's events. Little did I know that turning the O2 up too high would cause severe shortness of breath!
As silly as I felt, I was also joyful and relieved. Today would not "be the day" and I was feeling so much better! I laughed and joked and prepared myself to be discharged. But nobody was coming in to have me sign the bye-bye papers so I could go home. The nurses kept saying that before I went home the doctor wanted to see me again. Eventually the resident who had so kindly turned down my oxygen returned. This time, she wanted to run a battery of tests, some of them pretty major. She explained that, while the episode was most likely a result of my oxygen being too high, she was uncomfortable sending me home without making very sure something else wasn't going on. She had gone down the list of possible problems in her head and landed on pulmonary embolism. Before I went home, she wanted to rule this out.
While I was certainly the dumb one who cranked up the O2 causing respitory distress, it seemed obvious to me that that was all that was going on. I told her I didn't want any more tests and I was comfortable with leaving well enough alone. She explained to me all of the reasons it could be something more serious and why she wouldn't be following proper protocol to let me go home. I was now beginning to see she was an Overly Cautious Baby Stickler. Common sense told me these tests weren't necessary so I asked if there was something I could sign to let her off the hook if I went home and dropped dead of a pulmonary embolism. In the world of Sticklers, this is how you fight fire with fire--follow protocols to relive them of their protocols. This Overly Cautious Baby Stickler felt fine letting me sign the paper and walking out the door--no stone had gone unturned and no rules had been bent. We were both happy.
What I Know Now
Even the most difficult of circumstances get easier with experience. Please note, I said easier, not easy. Living with illness may or may not bring truly easy days but there will at least be an ease with which you surf the breaking waves. When I talk to folks who are pre-transplant, it's not uncommon for them to be absolutely overwhelmed by all of the transplant medications. They say "How will we ever remember all of those meds and when to take them?" Like with most things, with time it becomes second nature and there is no anxiety or trouble remembering.
Having Vigilant or Overly Cautious Sticklers in your medical business can make these transitions a little more difficult and confusing at times. Just imagine if you had to ride in the car with your high school driver's ed teacher for the rest of your life! There would have to be some amount of negotiation about which rules you felt should be stuck by and which ones needed some slack. Just like with driving, when it comes to dealing with healthcare protocols, you must do your homework and understand why the rules were made, practice those rules until they become second nature and eventually loosen the rules in appropraite, wise and safe ways.
Sticklers are Sticklers for different reasons. Perhaps they have not spent much time in the Sick World and it makes them fearful or uneasy. Perhaps they have a personality that thrives on rules and protocols and see no reson to every stray from what they have been taught. Perhaps they are simply doing their job and have no control over relaxing or adjusting set rules--they would get in trouble if they didn't stick to being a Stickler.
So, whatever the reason, what is a patient to do when facing a Vigilant Stickler or a Baby Stickler who is being a little too careful? Fight when you have to, grin and bear it when you can and sign a release to get them off the hook when possible. Sticklers aren't bad people and they're not doing anything wrong. That doesn't mean, however, that we shouldn't continue to assert our rights to make our own healthcare decisions, preserve our own sanity and reserve the right to use common sense in the face of science!
You must understand the rules before you can break them. The most important lesson I've learned about going against a Vigilant or Overly Cautious Stickler? I better be sure I know what I'm doing because, if not, there's surely an "I told ya so" waiting if I'm wrong!!