I Had a Dream
Updated: Jul 7, 2020
While it is nearing the 4th of July, with red, white and blue stars and stripes waving in the breeze, my I Had a Dream story is nothing like the one you are thinking of. No, it was a random dream that came the night before a simple medical test for my diaphragm this week, to confirm that one side of the diaphragm and thus the lung is not working correctly since a phrenic nerve injury sustained from a life-saving heart surgery three months ago. Since I was living and all, and breathing decently during the day, I was going to just let things go and keep celebrating the pulse in my wrist. However, last week I began falling asleep every day during the day, so I realized the problem was more limiting than simply having to sleep on three pillows each night. Late last week I was able to sneak in a quick appointment with a pulmonology nurse practitioner at the advice of my primary physician, and she ordered the X-ray test and a sleep study.
In case this is the first blog post of mine you have ever read, this is where a bit of back story will be of benefit. You see, I have been working for the past 7 years to solve the problem of an undiagnosed heart arrhythmia, find a workable treatment, and then after that failed, pursued a heart ablation. Just this portion of the story involved travel to roughly 14 cardiologists in 10 different health systems across six different states.
Once finding the ablation, then another touch-up ablation and a pacemaker later, I had complications from the first ablation that resulted in 4 additional surgeries including open heart surgery, with complications of infection and sternum non-union. You might consider me to be quite the unlucky patient, and that might be true. But I’m still alive and have returned to work treating my own patients as a Doctor of Physical Therapy, so surely that counts for something. But addressing these complications took another crazy number of doctors to diagnose and treat the issues- like 2 dozen across a dozen hospital systems across another 7 states.
The question though is, why? Why did a bone infection that presented precisely with the symptoms of a bone infection (fever, chills, nausea, weight loss, pain, abnormal blood tests) along with a bony mal-union easily visible on X-ray and CT scan, require seeing so many doctors in so many states? Let me start with the first reason, that being the responsible surgeon refusing to take responsibility for his infection and non-union. As in complete denial. Refused to even send me to his own infectious disease department, and his intern cancelled my CT scan in his own hospital ER. You could summarize this cardiothoracic surgeon’s behavior as an odd display of appallingly low curiosity in investigating his own surgical complications.
Once the responsible surgeon denied the existence of the obvious, it took quite a few more visits to ERs and other surgeons for them to order additional tests to finally acknowledge what was clearly evident on both PET scan and CT scan. As I celebrated the objectification of my very real problem, another cardiothoracic surgeon sent yet another intern into my hospital room to tell me that I did not have any infection or mal-union to treat, despite what their very own hospitalist and infectious disease doctors had just told me and shown me earlier on my PET scan and despite the positive reading of the radiologist. I learned that day that if a surgeon says the sky is green, the sky is green. As the patient, I did not realize the cardiothoracic surgeon is the god of the hospital system. I guess the sky is now green, because he said so, but didn’t have the guts to even tell me in person. Everyone else in the hospital shrugged their shoulders and then discharged me without any treatment at all, unable to over-rule the god’s decision.
Once the sky was green, I had become the patient no one wanted- either a patient who had seen multiple doctors who in their notes wrote that I didn’t have any symptoms or findings of an infection and bony non-union, or a real infection and sternum non-union that required re-opening the chest to debride, plate, and take cultures of an already infected sternum. Not surprisingly, it took another 6 doctors to review my case in several different states to finally find a surgeon willing to help. This was partially my mistake, as few cardiothoracic surgeons know how to plate the sternum. But still, not every surgeon I asked to perform the surgery, although capable and experienced with the plating procedure, said yes. So I learned that the sky had been green, because the surgeon didn’t know how to fix the sternum, and he was unwilling to admit that he the god of surgery could not fix me. It wasn’t at all green because I didn’t actually have an infection and non-union, despite what his intern had told me and what was written in my medical record.
Fast forward to just 5 months ago. I presented clear evidence of recurrent constrictive pericarditis to the top robotic surgeon in the country, who had detailed precisely how he performed the procedure that I needed in several research articles. Lucky me, he was located only 4 hours away! But unlucky me, because I had gone to so many facilities to get the care that I needed in the past, the surgeon came into my consult with bias against me. How do I know? He wrote it right there in my medical record. Three weeks after a reluctant yes to perform the surgery and three more trips 4 hours away to undergo pre-surgery tests and appointments at his hospital, he said no. The reason? In my medical record, it says that one of the tests showed I did not need the surgery. But if you look back to the very first visit, he clearly stated I had been to too many facilities for care. I never had a chance.
Thankfully, there are hero doctors. They are regular doctors and surgeons simply doing their job without bias, listening carefully to the patient’s problem, reviewing the records and test results, and offering the appropriate solution or surgery. And even if they did not know how to perform the procedure or surgery I needed, they referred me to one who did. To medically abused patients such as myself, they are a real God-send. And because of those doctors and a robot sales rep, I was able to find another surgeon, 19 hours away from my home, to perform exactly the same procedure six weeks later.
I tell that backstory, so you can better understand my dream. It was short and simple. In the dream I had the brief X-ray test for my diaphragm, and in the dream, the test showed that I did indeed have a problem with my diaphragm related to my last heart surgery. I looked up at a doctor in the room looking at the X-ray, and this person turned to me and said, “No, I don’t see anything. It looks completely normal.”
That was it. The entire dream. I woke up and pondered the meaning. Since I am not a psychologist or counselor of any stripe, I imagine my psyche was revealing my true feelings about healthcare. In the dream, I was not scared, shocked, or even remotely disturbed by what the doctor was telling me- looking at the abnormal test and telling me it was normal. Sadly, it was expected. All of my previous crazy, negative, and appallingly terrible treatment in healthcare had conditioned my brain to expect just that. The sky is green, because I say it’s green. And you just have to live with the consequences. And in my mind, that kind of treatment had now become a normal and usual occurrence after happening over, and over, and over again. I had been conditioned to be told the sky is green, and I no longer even batted an eyelash at the mis-truth.
It’s taken a couple of days for me to further consider this dream. How very sad it was, especially because I am a healthcare provider myself. I would never treat my patients like that. Not ever. And honestly, in the past several weeks, I’ve experienced just the opposite from physicians in several disciplines. I’ve told them my issue and symptoms, they’ve ordered appropriate testing, and I’ve received excellent treatment options. It’s as if seven years ago I entered an alternate universe. And clearly now I had returned to my own predictable and familiar universe. A universe where as a patient I was believed and taken seriously. I was respected, and my thoughts and concerns were considered and addressed appropriately. But I have to wonder, didn’t I just see dozens of physicians in dozens of health systems across multiple states, year after year? What happened to my title of “crazy patient” with a likely “psychological” diagnosis? How had this label disappeared as quickly as it routinely appeared in the first place?
I can’t explain the reaction of any physician or healthcare provider to me as the patient when I walk in the room. I’ve approached every appointment exactly the same. Here’s the problem, symptoms, pertinent records, etc. So why the different response? I’m still analyzing. I don’t have a rational answer. Which tells me, it's not me, it's them.
In the meantime, I am so thankful to have arrived back down on planet Earth, where the sky is blue, and my physicians agree, that indeed the sky is blue. The X-ray test for my diaphragm was abnormal, and the radiologist and pulmonologist agreed that it indeed was abnormal. And I have another test scheduled for next week to help find me a simple solution, so I can go on and live my life without falling asleep at any random moment. While these doctors are not heroes, each of their small, appropriate responses, actions, and diagnoses remind me of the medical field I used to know. One I used to trust; one that at one time did not routinely betray me.
As to my dream? Thankfully, it DIDN’T come true. While it will likely take many more positive one-on-one experiences with physicians to erase the trauma of seven years battling for every appointment, test, diagnosis, and treatment, I am happy to say that I’ve begun the journey toward that clear, blue, sunny sky. I am certain that one day, I will dream a new dream of an exam room where I am a patient who is believed, objective data is reported truthfully and transparently, and I am offered a reprieve for what ails me. One doctor from one healthcare system in my state. I have a dream…
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian wife and mother of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any outdoor activity with her husband Tim and three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, and coaching a middle school basketball game or two.