Miracles We Have Seen

by Harley Rotbart

  We arrived at the hospital with the bulk of our instruments not available to us. They were hopefully going to arrive shortly, after having been mistakenly diverted by the airline to Panama. We had salvaged some old instruments from the hospital and some basic ones that were sent to us from New Zealand to get us through the first two surgical cases. We had jerry-rigged an apparatus to allow us to use scuba equipment to run the pneumatic machine we needed to perform the operations. The money needed to make this apparatus had been donated for our trip by the grateful grandparents of the patient de-

  scribed in the “Shrapnel—I Knew He Had Lost His Eye” essay elsewhere in this book. All told, the value of the instruments we had to bring, via donations and any other means possible, totaled more than $400,000.

  After our second case, my ultrasound expert told me that a patient we had seen earlier in the week in clinic for an eye examination had returned, having lost vision in his only eye. He was a farmer, a father of five, and years before had lost one eye from problems related to diabetes. He now was only able to see a hand moving in front of his face, a consequence of blood in the back of the eye that had just occurred in the two days since his previous visit to us. There was no view to the retina and hence the need for an ultrasound, which revealed a possible torn retina. I was left with a very difficult choice—we already had a full schedule and insufficient supplies to be able to add him to the list. We were forced to cancel a less urgent case and fit him in with hopes of saving his remaining eye.

  It was miraculous that we were even able to help this patient. Of all the times he could have a torn retina, he gets it the only time a specialist team had ever been in the country, and at the exact time when we could operate on him and prevent a tragic outcome. The line between miracle and tragedy is a thin one.

  But what made it really incredible is that I should never have been in Tonga on that trip in the first place. To understand why, I need to take you back in time.

  Back to the day I died.

  * * *

  When I was thirty-five, I noticed unusual beating of my heart and was subsequently told I had cardiomyopathy (a disease confined to the heart muscle and not related to any other medical problem). By age fifty, my heart rate was around thirty beats per minute (normal resting heart rate is sixty to eighty beats per minute), which I convinced myself was consistent with being in tremendous physical condition (which, given the extent of my exercising, was impossible, but denial works even for doctors). When my feet began to swell from excessive fluid I knew things had turned for the worse.

  In the years that followed, my heart slowly, decisively, worsened. A pacemaker was inserted, and my exercise tolerance diminished steadily. In spite of this, or maybe because of this, I continued to lead my life as if nothing was wrong. Then came Athens and that fateful day.

  It was a hot spring day and my wife and I had enjoyed the sights of the ancient capital. For dinner we went to the Plaka, an area around the Acropolis that was filled with narrow, twisting streets originally constructed to allow the Athenians to retreat and fight an urban war against an enemy unfamiliar with the layout. Now it is all about quaint cobblestone streets, a tourist destination. I went up to a gelato stand and ordered a lemon-blueberry.

  I felt my heart beat very fast and irregularly. I bent over, and then heard everyone scream. Then everything went black. I would find out later that I had experienced an episode of ventricular fibrillation, a condition where the larger chambers of the heart beat irregularly and ineffectively. It is a fatal arrhythmia: brain damage can occur within minutes, death follows if it is not reversed. Somehow, my ventricular fibrillation stopped on its own. The line between miracle and tragedy is a thin one.

  Well, that is the last time I ever order a lemon-blueberry gelato.

  When I came to, there were strangers standing around me, I heard people saying my eyes stopped looking lifeless. That seemed like a good thing. I stood up, completely disoriented, confused. They called an ambulance which, like the Spartans of ancient times, was unable to find its way through the maze that is the Plaka.

  The gelato stand owner was so happy to see me alive he gave me a free gelato just like my first order. If I had known that was going to happen I would have ordered a double the first time.

  After that there were many episodes, too many close calls. I had a defibrillator permanently implanted in my heart that is designed to shock me out of dangerous rhythms like ventricular fibrillation. It’s like having the paddles you see on TV, but inside you. It went off one time after I passed out while waiting for a green light to go on the freeway. If that had happened a few minutes later when I was on the freeway the results could easily have been fatal. The line between miracle and tragedy is a thin one.

  One time I was in the hospital for observation while a new medication was being tried out to help my heart. I felt my heart race, my blood pressure fell to 80/40 (normal is 120/80), my lips and ears turned blue. I was barely holding on to consciousness when I heard “Emergency assessment team to room 7A stat” repeated several times. Stat means immediately, urgently. I thought to myself, At least I am better off than that poor bugger. Then it hit me: I am in room 7A!

  They decided to take me to the intensive care unit. I called my folks; in my mind I was saying good-bye. I asked for a priest, I had to get something off my mind. When he arrived I was in ventricular tachycardia, another potentially fatal abnormal heart rhythm. I told him if I didn’t make it out of the ICU he had to promise me he would tell my daughter, twenty-one years old at the time, to wear my wedding ring around her neck when she got married. Tell her I loved her with all my heart (and since my heart was massively enlarged to three times normal, that is a lot of love), that I was sorry I could not make it to her special day. That is what daddies do, give their daughters away, right? If I could not be there I would be watching. Right after that my ventricular tachycardia subsided.

  In July 2008, only a couple months before the Tonga trip, my dad died. My hero and lifelong mentor was gone—he died from complications stemming from cardiomyopathy, the same problem I had. This shook me to my core and threw me again into multiple episodes of abnormal heart rhythms. Back to the hospital for emergency treatment with progressively more aggressive medications. By this time my Tonga team had done so much work; there were all the donations, all the expectations for the people of Tonga. I thought they were all lost, that the trip was over before it started. So did many of the people helping us. Then one of the nurses on my team came to me and said, “I know things look bad, but let’s just go ahead with what we have to do. Just another hurdle we have to overcome.”

  Inspired, I told my physician, “Patch me up, Doc. I have given these people my word. They are counting on me. Do whatever it takes to get me there.”

  In August of 2008, just three weeks before we were due to go, I experienced a shower of floaters in my eye, small particles in my field of vision. I knew right away I was bleeding and that the most likely cause was a tear in my retina. My own retinal tear; I swear doctors seem destined to get the problems they specialize in. I went to my ultrasound expert, the one who would travel with me to Tonga if we ever made the trip, and told him I had a miserable patient for him to examine. A real “dirt bag” of a patient, but try and be nice to him. Then I told him my name. He agreed with the dirt bag part, but saw me anyway.

  Sure enough I had a tear in my retina, a large one. By some miracle it did not lift off my retina and cause a detachment. The line between miracle and tragedy is a thin one. I went to a colleague who had operated next to me for years; we both agreed surgery was required. I repeated for the second time, “Patch me up, Doc. I have given these people my word, they are counting on me.”

  Somehow everything hung together. My heart, my eye, my spirit, and off we went on our great mission, our great adventure. Thousands of miles away, to a land with rudimentary hospital facilities, where a vitrectomy procedure to save
vision had never been done in their entire history. To a people we had never met, fulfilling our promise, against seemingly impossible odds we were going to meet our destiny.

  * * *

  That brings us back to Tonga and the operation to save the only eye of the patient I described at the beginning of this saga. Ironically, he had a very similar problem to mine—blood in the back of the eye from traction on a blood vessel. We cleared out the hemorrhage, treated the problem, and by the next day he was 20/25, almost completely normal vision. To the best of my knowledge he remains full-sighted in that eye to this day.

  We saw dozens of patients on that trip, helping to restore vision and, in the view of the islanders, create miracles they never dreamed possible. Such is the effect of what we see as our everyday practice of medicine in a part of the world devoid of such blessings.

  After we returned home my heart continued to deteriorate, now even quicker than before. Soon I was told that I had no better than a 50 percent chance of surviving a year unless surgery was performed—a heart transplant, no less. I was stunned, speechless.

  I was placed on a wait list; I had to wait until some young person died, in a manner that spared his heart, so I could live. And that really sucks. I should be the one to go and he should live on. When the call came I still could not believe what was about to happen.

  Heart transplants are a big deal, with special surgical and anesthesia teams in place, lots of preparation on the part of the doctors, nurses, patient, and family. When that was all done, one of the doctors came in and informed us he was going to “harvest” the donor heart. He had a Learjet at his dis-

  posal and off he went at 11:30 that night. Then, all we could do was wait. My wife and I talked of superficial things, long pauses, and no mention of the surgery now only hours away. Finally, at 3:30 am, the surgery team arrived and informed me it was time to go to the operating room. My mind quickly went to another hospital bed hundreds of miles away where the simple words, “It’s time,” meant saying good-bye to a fatally injured loved one forever as he was taken to the OR to donate his heart. To me. His trip to the OR meant death; mine meant life. The line between miracle and tragedy is a thin one.

  I kissed my wife—good-bye?—and was rolled out of the room. I was alone with nothing but my thoughts. I thought of my kids, how lucky I was to have a loving wife and to be alive in a time and place where the miracle of organ transplantation is possible. How lucky I wasn’t in Tonga, where even routine eye surgery was miraculous—what would the islanders think of replacing a diseased heart with a new one? We arrived in the OR and I looked around at all the instruments, the bypass machine that would allow the surgeon to remove my heart from my body but still maintain blood supply to my vital organs, and finally the surgeons, anesthesiologist, and OR techs assembled around the table. Ronald Reagan famously said when he went to the OR after being shot, “I hope you are all Republicans.”

  “We are today, Mr. President,” was the reply.

  Now that it was my time all I could think of was, I hope none of you are ophthalmologists. That was my last memory until I woke up.

  I was back in my room. Everything looked the same as when I left. Did I really have surgery? Was it all some sort of weird dream? Then I saw the all the blinking lights from computer readouts, lots of tubes in my body, and to my amazement a cardiogram machine showing a normal heart rhythm. My first sustained normal heart rhythm in years. I turned and there was my friend, the nurse from the Tonga trip, who had never given up hope. My family had been up all night and had seen me as I came out of the operation, but I had no memory of it. I tried to talk, but could not; there was still a breathing tube down my throat.

  And all at once it hit me, the operation was over. I reached out and grabbed her hand and in my mind screamed, I’m alive! I saw a tear roll down her cheek and she understood.

  They pulled the tube from my throat, letting me breathe on my own, and I fell back asleep. The biggest day of my life was over.

  The nurses told me that my first words after surgery were asking about who the donor was, over and over until they were sick of saying they could not tell me. Another memory lost to the anesthesia and pain medicines. The identity of my donor has haunted me ever since. But I do know it was a young life (someone said a twenty-three-year-old) taken far too early. My miracle was only possible because of the tragedy that befell my donor and his family. A thin line, indeed.

  I feel I have not just another’s organ; I have his spirit. I no longer refer to myself as “I” but as “we.” I made a solemn oath that first day to take my donor, my internal and eternal brother, on the great ride that is life. That we would experience all that life has to offer together, for that is what we are. I would strive every day to be worthy of the great gift I was given.

  For you see, there is a bond between us that can never be broken and a debt that can never be repaid.

  We are one.

  Date of event: Late 1980s

  Redeemed

  Bruce Reidenberg, MD

  It was the late 1980s in New York City and AIDS was a consuming concern. Young adults and a few babies were dying slow, painful, bleeding and choking deaths. I was a pediatrician training in infectious diseases at one of the few hospitals that offered a clinical research trial of the first AIDS antiviral medicine in children; it was called AZT (azidothymidine). At that time, the median survival for children born with AIDS was eighteen months. On my way to see a four-month-old boy with weight loss and worsening pneumonia, a very angry woman ran toward me and then turned down a hall-way. She was cursing the nurses. She even tried to punch a nurse before she ran down the stairs and out of the hospital. A resident physician-in-training pulled me into a conference room and quietly told me that the woman was the mother of the boy I was about to see.

  The resident said he called the infectious disease service because the resident was worried that this woman’s baby had AIDS. I looked into his crib and the baby boy was able to smile at me. He was so weak and frail-appearing, we couldn’t be sure whether he was developmentally delayed or just very sick. We did an extensive evaluation, adjusted his treatment, and confirmed that the baby had an immune deficiency, but we needed an HIV test to be sure it was AIDS. HIV is the virus that causes AIDS, and a positive test for the virus would confirm the diagnosis. For that we needed the mother’s permission, but the contact information she gave the hospital was false.

  Our wonderful social worker, with the help of local police, eventually located her. Unfortunately, she didn’t come to any of the appointments or to the hospital to visit her son. After two weeks in the hospital, the baby’s health deteriorated and he was transferred to the intensive care unit (ICU). The ICU brought him through a very severe pneumonia, requiring a very risky open lung biopsy, hourly adjustments of his ventilator (breathing machine), and frequent simultaneous dosing adjustments of several medicines.

  It took several more weeks of hospital care for the baby to start gaining weight. Then the smiles became more frequent and he achieved some developmental milestones. His mother still hadn’t visited and missed seeing him roll over for the first time. In the second month of hospitalization, she finally came to see him one night around 2 am. The resident physician and the night nurse stated that she was intoxicated and belligerent. She wanted to take her baby home right then. She again cursed the staff when they suggested she stay at his bedside and learn how to give the medications and the special feedings her baby needed. The mother’s cursing woke the other children and parents on the pediatrics floor, and there was enough chaos to require calling security. Around 3 am, she tried to punch the night nurse and then ran out of the hospital. The next day our social worker was unable to find her.

  The social worker had learned that the mother was a drug-addicted prostitute with no real address. Normally, the mother’s behavior in the hospital would have brought on a formal investigation and the beginning of a p
lacement into foster care. We were very concerned that she might return and take her son out of the hospital against medical advice and not care for him. At that time, our legal option was to have the mother charged with neglect, which would result in her losing custody of her son. The hospital would then have the legal standing to use hospital security, and even police, to keep the boy in the hospital. If we did not pursue neglect charges, we would be partially liable for any harm coming to the boy through the mother’s actions because we would have “failed to report” the danger.

  The chief of infectious diseases shocked me when he argued for the mother to keep custody. At that time the only potential treatment for AIDS was AZT and it was not yet approved for use in children. The only way for a child to get AZT would be in our clinical trial that required parental consent. The chief knew that the government agencies would never give permission for a foster child to be enrolled in a clinical trial. The chief believed AZT was the boy’s only hope for survival. I was strongly against allowing the mother to maintain custody and the right to take her son out of the hospital. I thought the mother was a more immediate threat to our patient’s life than the HIV virus. If she took him home I was afraid she would not feed him, would not give him his medications, or might even give him heroin to stop him from crying. The chief overruled me and, with the social worker, made arrangements for the mother to have emergency housing and telephone service. Eventually the social worker and the police found her and moved her into the apartment. The social worker made an official “home visit” and declared it safe.