The agony of being a patient

F106B43D-6B68-4562-BE00-B8A0307F4CB0

We have all heard that old saying “doctors make the worst patients”. It always uncomfortable and humbling to give up control and be a patient. I’ve been a patient in various capacities throughout my medical training. With my primary care doctor, who knows to reign in my gut reaction for always thinking the worse-case zebra diagnosis scenario. With several trips to the ER for such human ailments as severe dehydration causing fainting or intractable migraine… where the ER staff was always polite, efficient, and preserved my dignity. And in Mexico where I spoke little of the language and spent 12 hours in a hyperbaric chamber with a lovely man named Juan watching Miss Congeniality during a frightful episode of the bends.
My biggest trial as a patient began one innocent night playing indoor soccer. I recently had been getting back into shape so I thought our residency soccer team would be a great way to elevate my fitness level. Alas, a mere 5 minutes into the game I collided with the ball at the same time as a player on the other team. In a split second I was on the ground. I heard a loud “pop” and felt a sudden excruciating pain in my right knee. Instantly, I knew I had torn my ACL, maybe done even more damage. There was a constant string of profanities coming from my mouth as my husband and friends helped me off the floor. I sat in shock icing my knee for the rest of the game. Stunned, I hobbled to the car and made a call to get in the next day with a sports medicine doctor I knew and trusted.
In my sports medicine doctor’s office I sat numbly waiting for a few minutes. He couldn’t do all the components of a standard knee exam due to the significant swelling and my pain. He tried to reassure me that perhaps I only tore my MCL, but we needed the MRI to know. Of course the MRI showed the more difficult to treat scenario of a torn ACL, torn lateral meniscus, and tibial plateau fracture. Quickly resigned to my new reality, I went to see an orthopedic surgeon. This was a physician I had spent time rotating with during my medical school. I didn’t know him well personally, but he had a good reputation with other doctors I knew. At my appointment he reiterated the diagnoses and then we discussed surgical options. His recommendation was for a patellar tendon graft from my “good leg” to repair my torn ACL. The surgery would be scheduled in a month due to the severe edema still present from my initial insult.
At the time of my injury, I was in my second year of residency training in family medicine. Instantly I was back in the clinic seeing patients on crutches until my surgery date. The day of surgery, I was fairly nonplussed and told my husband to go home and take care of our dogs and tidy up the house while I was in the OR. The last thing I remember was transferring from the gurney to the freezing operating table. I was mortified that the doctors and staff would see my underwear more than anything. I woke up in the PACU with my husband by my side. The meds were still in full effect from the surgery, so the pain was tolerable. A physical therapist got me set up with my ice machine and quad exercises to start at home and I was wheeled to our car. Somehow we got me home and into the house before I collapsed onto the guest bed and slept till the next day.
The first 2-3 days after surgery were excruciating. I awoke on the guest bed only to find I couldn’t stand up. I tried and tried, each time screaming out in pain. Finally, with my husband’s help I propelled myself upwards so I could go pee and move to the couch. As I had surgery on both my legs, due to the graft harvest site, I no longer had a “good leg” and was struggling to maneuver with each step. I spent those first few days on the couch with my paralyzed beagle-basset Beau faithfully by my side for company. Spinning in a Percocet induced haze, I forced myself to get up and move and do my exercises.
After a week, I was ready to start my rehab in earnest. I was getting around better and the pain had manageably subsided. I only needed the Percocet before therapy sessions and at bedtime, preferring ibuprofen instead. I was excited to get going with my physical therapy, to get back to normal. Everything went well for the first month, and I was diligent and worked hard. Then one day after my therapy session, I noticed my knee felt very stiff. The next morning I couldn’t straighten my knee all the way, it’s like something was blocking its path.
Frustrated, I went back to my orthopedic surgeon. He examined me and said that I just needed to keep working through it and I would regain my range of motion. So that’s what I did. For weeks, with no improvement, I worked and worked to get better. After some time my surgeon decided that we needed to force my leg into full extension or I would lose my range of motion permanently and always have a limp. This process involved what is called extension casting. Basically, this form of treatment involved a resident or my surgeon and nurse standing above me and pushing down as hard as they could in my leg until it straightened while another resident put a cast on the straight leg. I cannot fully summon the memories of those casting sessions. I remember only screaming and swearing at the doctors and nurses and thinking that I may pass out from the pain. It felt like a form of medieval torture, not treatment.

80734F8A-0695-4F44-BF67-53CF2A8DCA67
The next few months were a step and repeat of extension casts. I diligently followed all instructions and hoped each time the cast came off my knee would be improved. It wasn’t. It came to the point where I would start to panic before appointments with my surgeon. At this time, I had missed months of my residency training and I was falling further and further behind my peers. I worried everyday that I may be fired for being unable to complete my job. The pain continued to be nearly intolerable, but I pushed through it because I had to.
Worse than the physical pain was the emotional toil this process took. I couldn’t walk. I couldn’t walk without pain, without a limp, without crutches. Each time I would see my surgeon I‘d become more desperate. I’d beg him to consider other options, mainly arthroscopy to find out what was blocking my extension from being normal. These discussions were harder and more painful than every single cast I was put into. Each time I saw my surgeon I would start off by having a rational discussion as a doctor who also happens to be a patient. As the weeks wore on, my ability to regulate myself and be clinical about my situation lessened drastically. After a few months, I barely wanted to speak to my surgeon. When I did speak I inevitably would start to cry and lose control of my composure. I was a doctor myself, yet my surgeon was not taking my opinions seriously and was not listening to me. I felt like I was a broken record and that no matter what I said, he wouldn’t hear me.
Eventually, I had to return to my residency training. I was no better than I had been that day my knee seized up on me months before. I wore one of my extensions casts all day at work that had been cut into halves so I could remove it when needed. Part of my job as a resident on call was to respond to and run any “code blue”. I adapted to this by calling the nurse on my way across the hospital while I wheeled myself there in a wheelchair. It was very difficult to complete the physical demands of medicine with a significant physical disability. At the end of each day I was physically and emotionally exhausted. I stopped even thinking about not being and pain or walking regularly and tried to focus on just getting by. The last time I saw my orthopedic surgeon, he asked how I was doing. I was an empty shell of myself, depressed and in despair. I barely looked him in the eye and resigned myself to the forgone conclusion of his advice: “there’s nothing else we can do now. Keep doing your therapy. Your quad strength isn’t good enough. If you get stronger you should improve your extension and mobility.” I felt so insignificant, like nothing I could say or do would ever get through to him. He wasn’t listening. He didn’t see me. He talked “at” me and not to me. Most hurtfully, he placed the blame on me for my failure to get better. I wasn’t doing a good enough job with my therapy and exercises, therefore if I didn’t improve I had no one to blame but myself.
At this point it had been nearly a year since my original injury. I had not improved and remained in constant pain with a terrible limp and needed a crutch to get around. I made the decision to go to another surgeon, in a different group, for a second opinion. I sought the recommendations of another local doctor and one at Ohio State University. At my initial visit with the local doctor he listened to me, heard my concerns, and then recommended continued conservative therapy for now. We agreed on a steroid injection into my knee to see if that improved my condition. We discussed at length that another surgery may only make things even worse, but it may be the only option if the injection didn’t help. The surgeon at OSU had agreed with this plan, so we proceeded to carry it out.
The injection did help for awhile, it improved my pain and I could walk slightly better without a crutch. It’s effects lasted for about 2 months before I regressed. At that time I met back with my new surgeon and we agreed to proceed to arthroscopy. There were no guarantees made, and I understood that if no mechanical cause was found I would be left with no recourse but to hope the physical therapy and time would eventually help. I had communicated with my initial surgeon on and off via email, and with my next surgery approaching, this is the last email I wrote to him:

Dr. X,
I stopped coming in to see you when I felt the doctor/patient relationship wasn’t working any longer.  Honestly I was very frustrated, as you know, and I couldn’t hear another platitude without a contingency plan for what we would do if my knee did not improve. I felt like there was an absolute communication breakdown between us. In late summer I finally was able to wean off my crutch but still had persistent pain and limp. My physical therapist discharged me as she said there was nothing else she could do to help me, we had done it all. I saw several other physicians for their opinions and continue to see Dr. K now.  I had a steroid shot which was a helpful band aid for awhile allowing me to do my job during some busy months, but it has now worn off and I am back to limping constantly and being in pain. As such, I regrettably am going to have a scope done in the near future. I do not know why my knee is the way it is, hopefully there will be an answer in the surgery, but I am not a fool to pin my hopes to it. Thankfully I am in a residency program that supports me as I would have long ago been fired if I were a resident in many other specialties, including orthopedics. I look forward to putting this behind me so I can graduate and get a job as an attending.

In the end, my knee arthroscopy showed a “Cyclops lesion,” a small piece of scar tissue preventing my knee from extending fully. Dr. K removed the scar tissue and I went back into physical therapy. It took time, but with persistence I was able to regain nearly all the range of motion in my knee. I stopped limping and put away my crutch for good. I went on to graduate from my residency training and am a happy and successful Hospitalist physician now.
My experiences with injury, surgery, and rehabilitation changed me. I had firsthand knowledge of how it felt to be repeatedly ignored and brushed off by my doctor. I had put my trust into this man, and he had repaid me by belittling me and painting me as the quintessential weak and histrionic woman. It took me years to recover emotionally from what happened. I lived in constant fear of hurting myself again and being unable to walk. I restricted my activities to only safe and low impact exercises to protect myself.
More than that, it changed how I saw and treated my own patients. I do not pretend to be able to help or fix all of my patients. Many conditions are chronic and debilitating, and I do my best to help my patients manage them. What I can do differently is listen to my patients. Truly hear there concerns, fears, frustrations and acknowledge them. Even if I cannot fix them, I do not brush away their complaints, and I try to give them hope. Hope is a factor I was sorely lacking while I attempted to get better. I essentially gave in to my injury and pain and was resigned to it. It was not until several years later that I regained my hope. I finally stopped living in fear and started to just live. I learned to run and jump and dance again. I stopped letting my past injury hold me back, and kept pushing my physical limits. As I write this I am training to run my first half-marathon, a remarkable feat I could never have dreamed even a year ago. The difference from then to now? Hope.
As physicians, we can lose sight of the power we hold over our patients. Our recommendations and decisions can determine the course of someone’s life. When we stop hearing our patients, we lose the ability to connect with them and give them hope. Without hope there is no chance to overcome the obstacles we face in life. I will carry these experiences with me, and I am grateful they have shaped me into the physician I am today.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: