Tag: what to do

An analysis of sin, our fallen world, and Biblical truth is critical to understanding what to do when things go wrong in the life of a born-again believer in Jesus Christ. We are all human and will make mistakes, some with dire consequences in our own life or the lives of others. Such philosophical gymnastics is not my strong suit but heeding the discernment of the Holy Spirit is mine for sure. And the Lord’s leading was clear recently. When faced with a recent dilemma of how to handle a potential case of medical malpractice, I turned to the ears of a Christian friend, God’s Word, writers smarter than me, journaling and prayer. Here’s the life-changing story.

A thyroid condition very likely was mismanaged for twenty-nine years of my adult life.

There were at least five Medical Doctors involved in the management of my thyroid condition over the course of my adult life. The Doctor completing a routine physical for my first job out of college made the diagnosis of hypothyroidism when he palpated nodules on my thyroid. I was a young woman, horrified and scared! I was told (in those days of the Merck Manual and before the internet) that thyroid nodules were relatively common, benign, and needed to be treated with medication. After all, hypothyroidism runs in my family! The drugs that each Doctor gave me changed over the years but the basic treatment plan never did: suppress the thyroid with synthetic hormones and “monitor” the nodules. This process was difficult at times when they switched me to more natural preparations or when a Doc suspected that there was an interaction going on between female hormone and thyroid hormone levels. However, nothing would be as “difficult” as the daily convulsive episodes that very likely were related to this issue decades after the original diagnosis.

Enter here 8 years of a serious illness portrayed by dozens of disabling symptoms, the worst of which was seizures every single day that began late that first year. At times they were so violent that screams erupted from deep within me often followed an inability to breathe and sometimes passing out in bed shortly thereafter. The head-banging and severity of high-velocity, involuntary movements created significant orthopedic injuries, taking me in-and-out of various manual therapies because (of course) I could not tolerate pain medication. My activities of daily living were strained and altered beyond belief; any noxious sensory stimuli, the time of day, and seemingly unrelated triggers set off the episodes often for hours per day. I awakened with them and a headache, body aches every day. I fell asleep with them. I tried to live around them as best I could after hours of recovery. I was up all night after the worst episodes and when trying to avoid them. 5:00 a.m. found me crashing into bed only to serve my 30-60 minutes of penance before passing out into fitful sleep. It was a living hell.

Only by the grace of God did I survive this time in my life. Sometimes I would have to wait for hours before my limbs would work right to drag myself to the bathroom. Other days if these waking seizures occurred when my gracious husband was home, he had to carry me to the bathroom, feed me, or drive me to the emergency room. Our life was hell much of the time and it tested our marriage in every way possible. Steve never knew what state he would find me in when he returned home from work . . .

Significant testing, research, treatments, expense, extreme avoidance strategies, travel to one specialist or another, sleep deprivation, and more characterized those eight years always hoping for some level of recovery. I didn’t only try CBD oil but SIX BRANDS of pharmaceutical-grade CBD oil at two different stages of this illness. One summer I plastered a hallway wall with dozens of sheets of paper including: a daily calendar, symptom and extensive treatment record, functional medicine charts, genetic testing results, and anything else I could think in a search for trends or clues. I was largely bed-bound in 2015 and spent 2016 receiving IV infusions of antibiotics through costly home health nursing care. Treatments would ease my worst symptom for a limited time then stop working with exception of oral Prednisone. The only problem with using steroids is that they are contraindicated in osteoporosis (which came along as part of this journey as well). I had to reserve PRN Prednisone for only the worst episodes each month because my primary Doctor would not order it more frequently.

Three years ago, a Naturopathic Physician came the closest to finding the “root cause” of the serious illness when he tested for and diagnosed an autoimmune thyroid condition. Bio-homeopathic injections (among other treatments) brought most of the labs within normal range but there was no appreciable change in my symptoms. I continued the injections just the same at a considerable out-of-pocket expense. Eventually I learned to give myself the injection, saving me an additional $20 per shot. It was pretty incredible that I was able to administer the subcutaneous medication when needle sticks of any kind generally triggered violent convulsive episodes! Somehow I got it done.

So this year when I finally made it to the Mayo Clinic in Rochester, Minnesota, and after pleading with the neurologists to let me see one of their endocrinologists, a friendly, Indian Doctor NAILED IT. I didn’t have an autoimmune disease. He said I was on too much thyroid medication! I have hyperthyroidism not hypothyroidism. A quick review of the literature found that it is hyperthyroidism that coincides with multi-nodule goiters in addition to half a dozen of the other symptoms that I was experiencing. The treatment is vastly different from anything I had ever been prescribed for 29 years! He immediately cut my medication in half while I waited for the new prescription to arrive in the mail. And within days, over six symptoms began to improve with the most significant being reduced convulsive episodes. It is now 4 weeks later and the trend continues. I have had several days free of seizures and dozens with barely a little zip of a tic!

The change in my life is nothing short of shocking. I discuss the other findings from my work-up at the Mayo Clinic HERE and the beginning of this entire saga HERE. There are videos of the episodes HERE with my hope to share my faith in Christ Who alone has helped Steve and I endure the worst of days. I would have died without Him! This blog came about to help me cope with this serious illness. The Lord carried me to hundreds of appointments over the years, helped me make dinner or my husband’s lunch when my head was pounding, or even walked with me to simply open up the back door to let out our pup out each day with thousands of seizures going on and on.

Then this week I wondered what I should do about the oversight, even incompetency of those five Doctors whom I trusted but gave me the wrong diagnosis and the wrong treatment? Maybe the “best practice” for the management of multi-nodule goiter and hypothyroidism have changed since they went to medical school/over the past few decades or maybe it’s just that they forgot the basic standards of care? Why didn’t they refer me to an endocrinologist for more comprehensive care? A second opinion? I never thought to ask to see a specialist as they all made it seem that ordering and reading the lab results were routine parts of my diagnosis. I researched my condition extensively but never even thought to search out an endocrine diagnosis that they did not give me. Repeat thyroid scans and testing were ordered somewhat irregularly and only tiny changes were ever made to compounded prescriptions because I was so “sensitive.” No one ever questioned the original diagnosis, why my lab values never stabilized and continued to worsen this past year, or why I could not tolerate medication changes. I needed a completely new treatment plan.

Each of my current two Doctors asked about the findings of my consults at Mayo Clinic. Both of them minimized the change in diagnosis! They minimized the need for a drastic reduction in medication, a potential complete change in treatment plan, and the impact of hyperthyroidism on the hellish illness that eluded both of them. Neither apologized nor assumed any responsibility for missing the mark. So as my mind has become clearer, my thoughts have turned to the topic of medical malpractice. After all both of them were negligent. As I considered this I became increasingly angry, hurt, betrayed, hot! A Christian friend suggested that I spend some time in prayer and Bible study, seeking wisdom; it didn’t take long to find 1 Corinthians 6 and multiple Christian writers discouraging the believer from lawsuits against fellow believers. Yes, both Doctors profess to be Christians. But what about their professional accountability? What about what happened to me? How do I ever see them for a medical visit again? Wow, Lord, settle my soul . . .

I’ll share here a part of what I found to be the best advice and perspective for persons who are believers that considering a medical malpractice intervention. It comes from James Druckenbrod in the November 1991 issue of The Linacre Quarterly (a publication of the Catholic Medical Association and the denomination from which I found the most extensive writing on the topic of the Christian response to medical malpractice).

. . . from a Christian ethical perspective, it becomes apparent that something basic is wrong with a society that so easily, and more frequently, can blame its “helping” professions for errors, and receive restitution in unlike kind (money rather than health or life). Either the “helping” medical profession falls short of its professed ethics to heal the sick, or society falls short of its understanding of what healing in modern times is all about. Or as this paper will suggest, both groups fall short of the gospel imperative of charity that becomes the way that the Christian communities display the vision of the Kingdom of God to a modern, pluralistic, and secular society. An underlying thesis is that medical malpractice has resulted from the secularization of the vocation of medicine. In the process of secularization, the basic social unit of the doctor-patient relationship, the spiritual union of God, doctor, and patient has been severely disrupted. The doctor as well as the patient and society have all contributed to this disruption by each taking their own advantage of the changes. A possible solution to medical malpractice for the Christian patients and doctors can be found in a return to gospel imperatives of trust in God, and obedience to God’s commandments.

I could fill many pages with all of the secular and Christian angles on the topic of medical malpractice with regards to what happened to me. And yet somehow through the past 8 years I always knew two things that: 1) someday the Lord would allow me to heal and 2) there was purpose and meaning in even the worst days of my suffering. It would not be wasted! Today I am going to choose to go with the mandate of 1 Corinthians 6 and the concept suggested above of charity; I will decline a medical malpractice lawsuit or taking my issue before “the church” in favor of lying it all at the throne of grace of my Lord, Jesus Christ. He is the Great Physician after all!

I do intend to approach each Doctor again about my care then write each of them a short letter on the matter. These actions will require much prayer and preparation. In the meantime, I still need their care in other areas of my health. But they aren’t touching my thyroid! For now I will reserve endocrinology issues for the Specialist at the Mayo Clinic who is helping to turn my life around. I just don’t trust anyone else with the new diagnosis of hyperthyroidism. Gentle Reader, perhaps you understand and agree? JJ