Six weeks post major robotic heart surgery is a big mark in the timeline of healing. It is halfway there in the orthopedic surgery terms with which I am so familiar. At 12 weeks, the body is considered to be 80% healed after a major surgical procedure. So it was fitting this week, albeit surprising late in the day of the 6 week mark when I finally recognized that it was indeed THAT day. Life has moved on, restored itself to normal. As a single mom with three kids and a business to run and patients to see, there’s little time for reflection.
However, my mind is busy processing nonetheless. It could care less if my ironing pile is growing and dust bunnies are visible on my end table. When major things happen in life like say, medical crisis, family betrayal, separation from children, business struggles, medical errors, end of life decisions, all condensed inside three weeks, at some point, you have to do some mental unpacking.
Processing is like filing all those loose papers floating around in your brain. It starts by taking single papers and sorting into piles. Most papers are easy to categorize and place on the correct pile. But then there are a few odd papers that you’re just not sure to which pile they belong. Thus begins the process I call rumination. You know, like what cows do to digest their food. Chewing their cud to further break down already regurgitated food. It might sound gross, but you know you do it. Deliberating the issue. Re-playing conversations in your mind. Rehashing the past. But doing so over and over again without successfully filing it away results in more angst instead of resolution. So I commit to thoroughly evaluating the issue, considering it from all angles and perspectives to get a fresh take on it that assists my mind in finding which box to tidily pack it away for good, so my mind can be occupied instead by living my life in the moment untethered from my past.
Anyone who knows me can vouch that I have a deep spiritual way of thinking, but turn that coin over, and I am very realistic, pragmatic to the core. It’s the blend of each that has contributed to my success in life so far. The issue at hand this week required both of those parts to blend in a unique way to arrive at a solution my mind could accept.
For the past several years, after having so many heart issues and surgeries, at some point if you have children, a business, and overall finances to consider, the issue of life expectancy arises. Early on when I researched inappropriate sinus tachycardia, everything I read made it seem like it was nothing but a fluff diagnosis for which there were no long term ramifications. I have since learned through life experience how gravely false that is. But, that’s a topic for yet another blog post. Moving on.
Several years later, when I realized without a doubt that I had constrictive pericarditis, the numbers were everywhere and were largely in agreement. For surgical causes such as mine, the numbers were 50% live for 10 years if the patient gets the pericardiectomy. It was a year after this first procedure when I learned how those numbers play out in real life. You get denied any new life insurance policies. But I don’t blame them at all. I get it. Insurance companies aren’t in the business of losing money, so they definitely aren’t going to sign on to take a bet with those kinds of odds. But I was young, and really had no other serious co-morbidities, so I knew I should be on the better side of 50%. I could live with that.
A year ago, I was able to get a robotic completion pericardiectomy. Surprising to me, since I hadn’t researched recurrent constrictive pericarditis prior to my first surgery since I had never heard of it and no one had informed me this could even occur, the numbers actually improved in the handful of studies I found. Up to 75% survive for 10 years or more, because now all of the pericardium was removed from around my heart. Things were looking up. Very encouraging. I was ecstatic. I could live with that, joyfully!
The surgery I had six weeks ago? This week I’ve been searching. And searching. Found some not very specific things. Still searching. I own a business. When faced with any kind of decision-making, I have to find the numbers so I have hard data informing my actions moving forward. But all I found is one line of reasoning. If 8 or 9 in 1 million get constrictive pericarditis (now mind you, constrictive pericarditis is one of the most commonly missed diagnoses that end up causing deaths per autopsy studies, so these numbers are definitely understating the actual population who get this disease process- but if all of the rest of the cases are missed and now dead, I guess that can’t technically count those cases in my numbers), and about 2 cases in 100 will need a second procedure called a completion pericardiectomy, that would put me in the one in 10-20 million cases bucket. To that I added the evidence from conversations with the doctors who I met 6 weeks ago. My surgeon had never seen a case like mine, despite doing pericardiectomies on 10 previous patients. Apparently neither had my cardiologist who basically gave me a death sentence, saying my case was not even worth surgery. So if my math is correct, my case is likely in the 1 in 100-200 million bucket. There are 331 million people living in the US. Got it. I'm not going to find any research stating life expectancy on cases such as mine given so few subjects.
I had a heart to heart with my electrophysiologist this week at my routine check-up for my pacemaker appointment. I love this doctor. She and I are so alike. We can actually communicate freely to each other, straight up, which is exactly the kind of person I needed to talk to with all of these numbers floating around in my head. I asked her point blank, “Can you tell me, was my cardiologist just protecting his ego saying my prognosis was so bad that I shouldn’t have even been given the life-saving surgery I had, or was he speaking truth as to my prognosis?”
The answer? You guessed it. Nobody knows. My case is so unusual at this point, there’s no way to predict what might happen. Scar tissue may grow again, but to grow in precisely the wrong locations cutting off the most important structures like they did in January? Does lightning strike the same area twice? I’m still young, and still actually fairly healthy. So my odds are… fairly good.
Now, I’m not one to be superstitious, but one has to have their eyes open to read the tea leaves around them. I mean, it was impossible to deny the emotional response doctors had to my case whenever they entered my room. For those of you outside of medicine, that’s not a good sign. Or that my surgeon called me this week, “To just see how I was doing.” Again, surgeons don’t do that. And he certainly didn’t give me a call to see how I was doing after last year’s procedure. And then I opened my mail to an advanced directives brochure sent to me by my health insurance company. And is there a particular reason that my 12-year old would request a Bible study for homeschooling on the book of Job? God, are you trying to tell me something?
So there you have it. The thinking from the right side of my brain hit a brick wall with no more data available. No more expert opinions to collect. And through the oddities of my daily experiences, something or Someone is telling me that I need to take this whole maybe-not-living-for-very-much-longer-thing seriously. My mind has examined the evidence, like a judge weighing the merits of the prosecutor and defense’s closing arguments.
I am left in the quiet of my heart and mind to come to a decision. It drives me to utilize the power of both sides of my brain, the words from my Bible, and the sum total of my life experiences to date. The only bottom line I can draw is a quote by Albert Pike: “Faith begins where reason sinks, exhausted.”
God is telling me something. It’s not a special message intended just for me. It’s the same message contained in His Word from the beginning of time. While I have the earthly responsibilities of a business, a house, and children to plan for in a practical way, how much more important it is to dwell on storing up riches in my heavenly home, no matter when that might be. I have a choice to live for today, live for myself, or live for Christ. The number of days, weeks, months, or years really doesn’t matter. Our calling and purpose for life remains the same. My recent challenges and the math that ensued only reinforces what each of us already knows, that our time here on Earth is short, a mere blip on the timeline of eternity.
As I ponder the attributes of God, I reflect in awe, wonder, and praise. But I also laugh, because God has a sense of humor. He sent Jonah to Ninevah, the last place on Jonah’s bucket list of destinations, and because of the reluctance of Jonah’s heart and refusal to go there, he was swallowed by a whale, after all. He gave Abraham and Sarah a child in their elder years, well past the normal possibilities of fertility. No doubt I will live until 102, just so God can prove a point. We humans think we have it all together and have life all figured out. But our knowledge and intellect pales so greatly in comparison to God’s omniscience, it is like a single grain of sand in volume compared to the sand of all of the lovely beaches of the world combined.
So here I am on a Saturday morning, picking up the piece of paper entitled “Life Expectancy,” and filing it away in the drawer in my mind labeled, “Who Knows.” My pondering now over, I have made the choice to rest in the words of my wise-beyond-her-years 12-year old that she randomly texted me one night while I was in the hospital, not knowing the state of my tortured mind as I had to wait overnight to hear whether my surgeon would indeed agree to do the surgery six weeks ago. She said, “I’m so glad that God is with us through all of this. It gives me peace that whatever happens He is in control.”
I have a choice to make. Will I focus on the hard road I have traveled that could lead to imminent death? The end of such a path is anxiety and bitterness. Instead, I choose faith in the One who holds the universe, peace that He knows the future, and hope that His plan and purpose is what He as my heavenly Father has determined is best for me and my children. This choice, after seeing the faithfulness of God through His work in my life, utilizing the highly technical skills of my heart surgeon not once, but twice in the past year, fills my soul with unending joy for my work yet ahead, and for the difference I can make in the lives of others.
1Therefore being justified by faith, we have peace with God through our Lord Jesus Christ:
2 By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God.
3 And not only so, but we glory in tribulations also: knowing that tribulation worketh patience;
4 And patience, experience; and experience, hope:
5 And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.
6 For when we were yet without strength, in due time Christ died for the ungodly.
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom 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 activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.