Ihave a well-worn card in my wallet. On one side, there is a bulleted list. The first item says, “I have no pancreas.”

This is the story of how I came to be without a pancreas, but it’s also a lesson about why I need a card to prove it. Unlike a medical-alert bracelet, which is designed for someone who is unconscious or otherwise incapacitated, this card is for when I am coherent but emergency room staff don’t believe I can give an accurate accounting of my internal organs.

My medical saga began in January of 2010 at three in the morning, which ironically was also the exact time I had gone into labor with both of my daughters. I woke up with severe upper abdominal pain, nausea, vomiting, and a fever. Unlike being in labor, this pain came as a surprise. Other than a gall bladder attack, I had never been seriously sick. I soon became a frequent patient at my local emergency room, where I arrived sometimes by ambulance, a few times by taxi, and several times with coworkers when I collapsed in my office and in the women’s restroom. The stabbing pain, which made labor seem like heartburn, just kept coming back.

When the blood tests at the emergency room came back with no abnormalities, I went from a patient with severe abdominal pain who was deserving of medication and a cozy heated blanket to a drug-seeking liar. This was the beginning of the opioid epidemic in my home state of New Hampshire, and in many ways, I understood why the staff were dubious about my need for pain relief. Yet in their rush to judgment, no scans were done to discover the reason for my abdominal pain, even when I became so jaundiced that one nurse practitioner warned me about the hazards of too much sunbathing. Perhaps the most distressing part was no one offered me information on treatment for my supposed addiction. Instead I was lectured many times about the risks of opioids, often while I was vomiting into a garbage can or one of those silly peanut-shaped plastic containers.

It was clear right away that something was amiss. Instead of disconnecting the intravenous line that had been inserted in my hand, a nurse offered me a wheelchair ride back to the surgeon’s office. My first thought was not fear, because I had known for a year that something was wrong; I instead felt hopeful for the first time that something could be done to end my misery.

The surgeon was blunt—like someone who doesn’t have time to mince words in an operating room. The results of the scan were obvious—so textbook that he excitedly gathered some medical students to look at the images.

“You have pancreatitis and can’t go anywhere. You need to stay right here and be admitted to the hospital. You could die.”

I rushed over to the little sink in the corner of the surgeon’s office to vomit. Within a few minutes, he had gotten me settled into one of those cushy reclining chairs, with lots of warm blankets, and had summoned a nurse to start an intravenous line so I could have pain medication. I heard him loudly telling someone on the phone that they needed to find me a bed before I threw up in his office again. I can’t recall ever feeling so taken care of in my life. He not only believed me, but he made sure that at this teaching hospital the medical students knew what I had been through, and how the diagnosis should not have been missed.

I learned that the pancreas is a finicky organ that releases proteins called enzymes to digest food, and contains insulin-producing cells called islets that control blood sugar. Pancreatitis is an inflammation of the pancreas for which there is no medication. As one doctor put it, “Starvation is the only real treatment.” A sign went up on my hospital room door saying “NPO” which stands for the Latin phrase nil per os or “nothing by mouth.” That means not even sips of water were allowed past my parched lips.

It was determined that I kept developing pancreatitis because of a birth defect called pancreas divisum. Pancreas divisum affects two percent of the population, but only a fraction of those afflicted are symptomatic. The pancreas starts as a divided organ in a developing fetus, but eventually forms one organ before birth. My pancreas had not completely merged into one organ, and the pancreatic enzymes needed to digest food were obstructed in their path out of the pancreas. This caused the pancreas to swell as it essentially digested itself. That is every bit as painful as it sounds.

I spent the next ten days in the hospital before I was well enough to go home, but I only got a short reprieve before the pain returned. Every few weeks I ended up in the hospital with pancreatitis, and often for a week at a time. I kept an overnight bag packed by the door because I got so violently ill with no warning. I puked once during the middle of a conference call, and I developed twelve cavities in my previously perfect teeth because of the stomach acid from all the vomiting. I broke bones in both of my feet just walking because I was malnourished.

The same surgeon who had originally diagnosed my pancreatitis decided it was time to attempt to repair my pancreas in March of 2012. When that failed to correct the problem, he performed a second 14-hour surgery in December of that year. My entire pancreas was removed, and the islet cells were extracted from my pancreas nearly two hours away at a hospital lab. Then those islet cells, crucial to keeping me from becoming a diabetic, were carefully transported back to me where they were injected into my liver through the portal vein. The entire procedure was called a total pancreatectomy with islet auto transplantation. The “auto” part refers to the fact that my own islet cells were used and so rejection was not an issue—a big bonus because that meant I didn’t need to take the antirejection medication that can leave a transplant patient susceptible to infections.

I have lots of memories of the twelve days I spent in the hospital after the transplant— both good and bad. My first inkling I was going to be all right was when the surgeon said that I looked like the Michelin Man because of all the swelling. I figured no one would say that to a person who was dying. The scariest moment was when I was still in the intensive care unit and I overheard a conversation between the many doctors in charge of my care. The conversation came in brief snippets as I drifted in and out because of the painkillers.

“I think we should do a blood transfusion now.”

My heart raced and I remember wanting to scream from my bed, “Yes, just give me the blood!” It was a strange feeling being too weak to yell. Didn’t they know I could hear them talking about me?

“That number can’t be right. We should recheck it. It couldn’t have dropped that much overnight.”

What number? Yes, it could! I thought. You want to take more blood out of me to see if I need a blood transfusion? Don’t you know how crazy that sounds from here?

“I think we should do the transfusion and not wait.”

I liked this one, this voice without a body that was advocating for me. He was the one I wanted to make this decision. I fell asleep again, fitfully, worrying if more blood was coming my way. When I woke up later, I saw one of the bags hanging from my IV pole contained a red fluid. I breathed a sigh of relief.

On the twelfth day after my surgery, on Christmas Eve, I was well enough to go home with my new accessory: a feeding tube. My stomach was damaged from the swelling of the adjacent pancreas, and I needed several months before my digestion returned to the point where I could eat solid food. I tried to concentrate when the nurses showed me how to do my tube feeding, but as soon as I got home, I had forgotten everything. My first attempt at tube feeding found me pumping yellow liquid all over the kitchen rug while sobbing.

I spent three months at home recovering, which involved sleeping a lot and weaning off the narcotics. The feeding tube was removed after two months, but my first attempts at eating solid food resulted in vomiting. I slowly figured out what I could eat, and how much, since my stomach was much smaller now. By May, I was feeling well enough to fly from New Hampshire to South Carolina for my daughter’s graduation from college. I ate steak for the first time in several years.

A common complication after the transplant is slow emptying of the stomach, and seven years out this is still a persistent problem. I also developed scar tissue that was removed twice by the same surgeon who did my transplant. Although I was off all painkillers several times since the surgery, some pain has returned due to nerve damage. It is not unlike the phantom pain experienced by patients who lose a limb. In my case I experience pancreatitis-like pain that sometimes becomes severe. This complication is more common in patients like me who were older when their pancreas was removed. I try not to dwell on how my diagnosis and subsequent surgeries were delayed because of the stigma and bias I experienced as a pain sufferer during an opioid epidemic. I have met many other patients with chronic pancreatitis, and we all share the same stories of having our pain dismissed and being accused of drug-seeking behavior.

The biggest challenge postsurgery has been the lack of knowledge about islet cell transplants by health care professionals. Whenever I have an episode of severe pain that takes me to a hospital, I must pull out my card to prove I don’t have a pancreas. This often has no impact. Recently I was at the emergency room because of an episode of severe pain and vomiting and a surgeon was paged to my bedside. Despite showing the card to the nurse and the emergency room physician, the surgeon began by stating he was there to see if he needed to do surgery on my pancreas.

“I don’t have a pancreas. It was removed.”

“Well that is not possible. You can’t live without a pancreas.”

“I had an islet cell transplant.”

I reached for the card again and after a dismissive glance at it he said, “You didn’t have your pancreas removed at that hospital. They don’t do that there.”

“We’re done here,” I said, thinking I wouldn’t trust this doctor to clip my cat’s claws.

During another hospitalization, thinking that the nurses were clear on what organs I had after four days as an inpatient, I overheard my nurse briefing the incoming nurse at a shift change.

“Ms. Phillips, age fifty-four, had part of her pancreas removed, she’s on a….”

“Hold on,” I interrupted, “I don’t have any part of my pancreas.”

“Yes, well, I know you said that, but they never take out the whole thing.”

“Yes, they do,” I wearily replied, as once again I removed the tattered card from my wallet. I think I should get it laminated.

Shirley Phillips is a former airline pilot and instructor on the Airbus A320. She was a professor of aviation sciences at Daniel Webster College and worked most recently as a researcher on airborne collision avoidance systems. Her work has appeared in The Atlantic, Pulse: Voices from the Heart of Medicine, Doctor T.J. Eckleburg Review, and other publications. She completed a Master of Arts in science writing at Johns Hopkins University and lives in New Hampshire near her two daughters.