Yet, as impossible as it seemed to all of us involved, the brief discharge summary went on to read: “Condition on Hospital Discharge: Good.”
There should have at least been an exclamation point!
Date of event: December 1990
A Limp Dish Rag
Adrienne Weiss-Harrison, MD
One aspect of doctoring that is rarely discussed, and about which little is written, is the “worry factor” for physicians caring for a sick patient. In pediatrics, in particular, although we must be candid and forthright with parents regarding their children’s conditions, we often mask the extent of our own worry, especially if we are worriers by nature. I fall into this category, so I am conscious about trying not to let my level of concern increase parents’ anxiety over their sick child. Physicians carry this “burden of worry” internally, and it is intensified by our training, which steers us toward considering the worst possible scenario when evaluating our patients and deciding upon a course of action.
It was December 1990, and a teenage patient was on my schedule one afternoon. The simple complaint on her office chart was “fever,” which didn’t at all prepare me for the situation that confronted me when I entered the exam room. This adolescent female appeared acutely ill with a fever over 104 degrees Fahrenheit, an extremely high body temperature for a child this age.
Based on the history given to me by the mother, my physical examination, and an X-ray, I made the diagnosis of pneumonia. To quote a phrase doctors sometimes use for the sickest kids, this young lady looked like “a limp dish rag.” Many worst-case scenarios entered my mind, and I considered admitting her to the hospital directly from my office. But, since I knew the family was reliable and would return immediately if the child was not improving at home, I elected instead to give her a dose of a strong antibiotic IV (intravenously, directly into a vein) in the office, the same antibiotic she would have received in the hospital. I gave the girl’s mom specific instructions about hydration, fever management, and what developments would require contacting the on-call physician and/or an emergency room (ER) visit that night. We sched-
uled her to come in the next day for follow-up, or sooner as needed.
As poor luck would have it, I had an appointment in New York City that evening and had to leave my suburban office right after inserting the IV line, but before the antibiotic was started. This was well before we all had cell phones to easily check in with our patients wherever we or they went.
My colleague who was on call for our practice that evening assured me he would be on top of the situation. So, I “signed my patient out” to him and drove the thirty-plus miles into lower Manhattan, thinking and worrying about this patient the whole way, reviewing the worst (and I hoped highly unlikely) outcomes, and second-guessing myself for letting this child out of my sight. The rest of the night was a blur for me. Was my patient able to take adequate fluids? Were her parents able to keep the fever down? Did she develop other symptoms? Would she need to access care in the hospital ER during the evening or night? Let’s just say it was not an evening I would want to relive.
The next morning in the office, I immediately checked in with my colleague who had been on call; he had not heard from this family. I hoped for the best as I prepared to call the child’s home. Just then, the nurse who had worked with me and administered the antibiotic the previous afternoon dashed in and exclaimed, “Dr. Weiss, you will not believe this! As the antibiotic was infusing, that teenage girl you saw came to life, perked up, and felt and looked much better!”
“Kathy, that’s impossible,” I said. “It takes an antibiotic at least twenty-four to forty-eight hours to bring a serious infection under control.”
She nodded and said, “I know, but that’s what happened. Really!”
The patient and her mom came in to the office that afternoon for our scheduled recheck and the next dose of antibiotic. As soon as I entered the exam room, the mother blurted out, “Wow, Dr. Weiss, that medication you gave my daughter was powerful and amazing! Before all of it even went into her arm, she improved almost 100 percent. She came back to life!”
I checked the young lady. She looked like she was ready to go out dancing, a total turnaround from the limp and listless, ill-looking teen who had been in my office just a day earlier. She was animated, dressed nicely, wore makeup, and said she felt much better. I was incredulous. Her chest sounded much clearer, too.
I told the girl’s mom and our nurse that had I not seen the girl with my own eyes yesterday and then again today, I would not have believed that degree of improvement was possible in twenty-four hours, much less within moments of receiving the first drops of antibiotic. I had no scientific basis for explaining what happened.
To this day, I think about that case, and truth be told, I still cannot account for how a patient’s serious infection responded so instantaneously to treatment. I was pleased that I had not shared the extent of my worry with the girl’s mom, but because I hadn’t, she’ll probably never know that I believe a small miracle occurred that night. I learned two important lessons from this patient and what happened on those two days. Firstly, although we do sometimes face crises with our patients, thankfully, most of the time our worries about worst-case scenarios don’t play out. Maybe if the worry keeps us diligent in our efforts, it’s worth the toll it takes on us. And, secondly, not everything in medicine (or in life) can be explained on a logical or scientific basis.
Date of event: Summer 2000
Whatever the Outcome, It Will Be Okay
David Kimberlin, MD
At the time, Casey was four years old and just starting chemotherapy for leukemia. One of the unavoidable complications of the disease and its therapy is suppression of the body’s immune system, which can result in unusual and severe infections. When Casey developed eye pain and redness, along with some changes in her neurological examination, we did X-rays that showed completely congested sinuses and damage to the sinus bones. Fearing a severe sinus infection, we sent Casey for surgery to clean out her sinuses and test the contents to determine the nature of the infection.
What we found was our worst fear—a fungus infection called Absidia, which is uniquely seen in patients with suppressed immunity. Absidia burrows deeply into the tissues it infects, and it is almost never treatable unless the immunosuppression can be rapidly reversed—and you can’t reverse the immunosuppression caused by chemotherapy on a dime the way you can with treatments for other diseases without risking worsening of the cancer. Despite the “clean-out” surgery, the fungus continued to extend into her eye socket and then her brain. Because of its location and the way it wrapped around blood vessels, we were not able to do any additional surgeries to help get the infection under control. All we were left with was antifungal medicines that usually have very harsh side effects, and we used every medical resource available to us. We even doubled the maximum dosage recommended for the antifungal medicines because her cancer was at a stage where we couldn’t risk stopping her chemotherapy and we knew her immunity would continue to be suppressed for a long time. When the scans continued to show progression of the fungus deeper into her brain, with obvious destruction of brain tissue, we truly believed this was a disease she could not possibly survive. Yet she did, and to this day there is not a viable medical explanation for that miracle.
Casey lost vision in an eye and the fungus burrowed over seven inches back into her brain. Given the extent of the damage, she should have died or at the very least been severely brain-damaged. Instead we watched her course with amazement and awe. Each time I saw her in follow-up I was moved to tears because of the remarkable recovery she was making. She not only survived, but grew into a bright, interactive young woman. Her leukemia went into remission, her immune system recovered, and her fungus disappeared. Disappeared!
I always saw this as God’s hand at work here on Earth, both in healing Casey and in guiding the family a
nd the medical team, including me. This case occurred just after I had passed through a very difficult time in my personal life. Watching the family cope with Casey’s illness was an epiphany for me, helping to strengthen my own developing faith and to teach me how to discuss God with families in the midst of crisis. Casey’s parents were Christians with strong convictions; they prayed openly and frequently in Casey’s room. That was not what moved me the most, though. Instead, it was the family’s deep, heartfelt belief that however this turned out for their beloved daughter, it would be okay. They weren’t praying for a single outcome—although, of course, Casey’s recovery was their greatest hope. But, should Casey not recover, they knew, absolutely knew, their child would be in God’s hands in heaven if not here on Earth. They were eternally optimistic that whatever the outcome, the outcome would be what God intended for their baby and for them.
I hadn’t witnessed this degree of faith before, and it changed me forever. As the years have passed and I have reflected back on those miraculous events, I have learned that we usually cannot control as much as we would like to believe we can. We can, and should, do our part, but there is something bigger at work around us. Since that time, I have tried to apply my experience with Casey’s parents to my professional life. I have never “preached” or imposed any belief system on the patients and families I work with, but I have become more aware of where they may be on their journey. When that includes a belief in God, I am less hesitant to acknowledge this in my conversations with them. This in turn can lead to an open discussion of faith, if the family takes the conversation in that direction. I believe that for some families this makes a true and lasting difference. Of course those families want medical treatments and cures, but they also want medical caregivers who recognize God’s work in this world. I, too, benefit greatly from these deeper, more real interactions, gaining strength and wisdom from my patients and their families, and hopefully giving more of myself to them as well—not in a religious way, but in a deeper, more empathic way than ever before. My experience with my patients now is very much a shared one.
There is something bigger going on in healing than just doctors and their treatments. As caregivers, it’s important to be aware that there are things out there we simply don’t understand and will never fully comprehend; we must be awake and ready to listen and notice. And, sometimes, we just have to get out of the way and accept that if we’ve given our best effort, whatever happens will be good and right.
Casey’s family never stumbled in that belief, and I have tried not to as well.
Date of event: August 2012
The Self-Healing Heart
Eugenia Raichlin, MD
It had already been a busy evening when I received a call from a local hospital that was treating a twenty-three-year-old man who had suddenly collapsed at home. Michael was a second-year pharmacy student here at the University of Nebraska and had been entirely well until the past few days when he developed what he and his family thought were flu symptoms. He was desperately ill and the hospital had asked for emergency transfer to our university facility. When Michael arrived here he was pale and cold with a low blood pressure. His family was scared to death.
We did an echocardiogram (“echo”) on his heart. An echo is an ultrasound test that allows us to see the pumping of the heart and the flow of blood through it. It’s the same kind of test doctors do on pregnant women to visualize the growing fetus. The echo study shocked us: there was very impaired heart activity, minimal and ineffective contractions with minimal blood flow. The heart has four compartments, or “chambers.” The lower two chambers are the ventricles, which do the pumping of blood; the right ventricle pumps blood to the lungs to receive oxygen, and the left ventricle pumps oxygen-rich blood to the rest of the body. Neither ventricle was working well—almost no blood was going to the lungs or the rest of the body.
We explained to Michael’s family that we believed this was acute myocarditis, an inflammation of the heart muscle often caused by a virus. August was the middle of the summer flu season, and the symptoms he had earlier in the week were consistent with a virus infection that had now severely compromised his heart. No one knows why most people infected with these viruses just get a cold or “the flu,” while a few develop much more serious illnesses like myocarditis. Without the heart pumping, the body cannot put oxygen in the blood or circulate the blood to the rest of the body. That explained his cold extremities and dangerously low blood pressure.
The surgeons and anesthesiologists urgently put Michael under anesthesia, put a tube into his windpipe, and connected it to a breathing machine to help him to breathe. They then connected his blood vessels to an ECMO machine. ECMO stands for extra-corporeal membrane oxygenator. This is a pump machine that circulates blood throughout the body without the use of the heart. ECMO can be used to bypass the patient’s heart when it isn’t functioning normally. To stay on the breathing and ECMO machines, we had to put Michael into a “medical coma,” meaning he would have to be unconscious as long as he was on the artificial life support we were giving him. This was a temporary solution at best, but it was all we had. Before the ECMO machine was available, many patients with this aggressive type of heart inflammation died within hours or days.
With the family’s consent, we put Michael on the heart transplant list, not knowing how long we could keep him alive on the ECMO machine. ECMO has its own potentially serious complications, including clots, stroke, infection, and bleeding. We repeated the echo imaging tests frequently to view and assess the status of his heart. What little heart function Michael had when he arrived was now almost entirely gone; blood was now stagnating in his heart! His lungs began to fill with fluid, the result of the backup of blood from his non-functioning heart. The family prayed to receive a heart for transplant before it was too late and the ECMO machine could no longer sustain Michael. Although not in front of the family, I, too, prayed to receive a donor heart to save this young man.
I was on call again over the next weekend when we received the wonderful news at night that a suitable donor heart had become available. The family was overjoyed, as were we. But by the next morning our jubilation turned to anguish—Michael had developed a fever and bacteria were growing in his blood. He had sepsis (sometimes called blood poisoning), a severe and potentially life-threatening infection. A heart transplant would be far too dangerous in a patient with sepsis.
Michael’s family was devastated, as was I. We all believed the transplant was his last best hope. Now we were faced with a potentially tragic situation—a heart was available, but the patient was too sick to receive it. What happened next stunned us. Michael’s blood pressure remained stable and even increased a bit, on its own. The heart monitors started to show signs of what looked like a slight pulse, which could not have come from the ECMO machine and therefore might reflect resumed heart activity. We hurriedly ordered another echo study and found, to our amazement, that one of Michael’s ventricle chambers was now pumping. Although not yet normal, it was a dramatic improvement from the completely stagnant heart of just a couple of days ago.
We spoke with the family and advised them that we must decline the donor heart for several reasons: first, transplantation was too dangerous in the face of sepsis; second, it appeared Michael’s heart was starting to “wake up”; and, finally, there was a long list of patients awaiting transplant for whom the chances of success would be greater than for Michael since the development of his sepsis. This was very difficult news for me to deliver and for the family to accept. How could we turn away a potentially lifesaving heart even if it would be a risky procedure—wasn’t risky better than sure death without a transplant?
Finally, we did all agree that it was best not to put Michael through the transplant, but rather see what would happen if we gave his heart a little more time to heal itself—a concept that was not part of our thinking at all until the first signs of his ventricle contracting and pumping b
lood. Over the next few days his blood pressure steadily improved until we were able to take him off both the ECMO and breathing machines. His heart was now functioning well! None of us could quite believe what we had seen, but a special heart-imaging study showed only a very small and insignificant area of cardiac muscle damage in an otherwise normal heart.
If a donor heart had become available a week earlier we would have accepted it without hesitation and transplanted it into his body, removing his own severely diseased heart without giving it enough time to recover. In retrospect, that would have been a big mistake. Transplanted hearts come with great challenges—nothing is better than the organs we were born with if we can keep them working well. Ironically, his development of sepsis prevented us from making that big mistake. Now, Michael has an absolutely normal heart, his own heart, and didn’t have to undergo the lifetime risks and challenges that go along with being a heart-transplant recipient.
Michael was the first patient at our institution to be sustained on an ECMO machine long enough to heal acute myocarditis. His experience, and that of others since from elsewhere, have now taught us to be more hopeful about the outcome in patients needing the bypass machine, and less anxious to rush to transplant no matter how dire the heart failure appears to be. This heart healed itself before we had a chance to remove it.
I was privileged to be just one of Michael’s medical caregivers to witness this remarkable recovery. I am forever indebted to the fine team at the University of Nebraska who partnered in his care—his surgeons, anesthesiologists, respiratory therapists, nurses, technicians, laboratory workers, and everyone else who was committed to caring for Michael and his family. At the time, I called his recovery a miracle, and I still believe it was. Thanks to Michael and others like him since, we now have a better understanding of the potential for inflamed hearts to heal themselves. Still, the timing of Michael’s sepsis event, forcing us to decline the donor heart waiting in the wings and allowing his heart just enough time to heal itself, was miraculous.
Miracles We Have Seen Page 12