Porphyria, A Lyon's Share of Trouble

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The Beginning

I was only seventeen years old when I suffered my first attack of Porphyria. The attack commenced with mild pain in my lower abdomen and quickly intensified to the unbearable point. When my parents realized that this was no normal illness, they rushed me to the nearest emergency room. By the time we arrived, I was so ill that I had to be helped from the car into the clinic and was placed ahead of the other patients as the number one patient on their triage list.

The physician and several nurses immediately came to my cubicle and initiated an emergency examination. After the doctor determined that I was not dying, he began taking the perfunctory medical history. I tearfully whispered that I was in far too much pain to respond to his lengthy list of questions. He was quite sympathetic and asked if I could at least describe my symptoms. I was embarrassed to sound like a melodramatic teenager, but I proceeded by telling him that my pain felt as if someone had pierced me with a thousand flaming swords and had left them deeply imbedded in my abdomen. I continued by explaining that I was ALSO experiencing such weakness that it was difficult to breath or lift my arms and legs.

Despite what others would have thought were youthful histrionics, the emergency room doctor did not dismiss my seemingly exaggerated complaints. Instead, he listened intently and continued with a more thorough physical examination.

The only outward evidence of my agonizing inward state was that my abdomen was extremely distended and hard as granite. After the doctor felt my huge abdomen, he advised me that I might require emergency surgery. The pain was so severe that I cried out that I was ready and hoped a surgeon could operate right away.

As soon as he finished my examination, he explained that he would have to leave for a few minutes to order a few more tests. True to his benevolent nature, he reassuringly added that he was requesting that the reports be returned to him immediately so that he might quickly diagnose my condition. Before he left my cubicle, he gave me one of those pats on the arm that are supposed to signify that everything will be fine soon. His gesture was kind and sincere, but I was so overwrought with pain that I knew then that whatever ailed me was serious business and that the compassionate doctor would find out soon enough.

The doctor had just returned to my curtained off cubicle when the technician brought him my lab results. He reviewed them and appeared perplexed by what he read. He showed me the report and pointed out that the results of the tests were normal in every category and, therefore, did not provide information that could help him determine what was causing me to suffer such severe symptoms.

I gasped in desperation, terrified that he and his colleagues would not be able to relieve my horrendous pain. Seeing my anguish, he reassured me that he would handle my pain and then admit me into the hospital to seek an answer to its cause. In the meantime, he promised that he would contact the best gastroenterologist on the hospital staff, who would surely shed some light on my ailment. He also promised to advise the physicians in charge of my case that I would need adequate pain medication and adequate meant more than a hefty dose. Astonishingly, he did not mention exploratory surgery again and neither did I.

Before finding myself in this new health predicament, I had never experienced a sickness that required much more than aspirin, antibiotics and mother’s cold rags. At that point, those measures would have been like using a tricycle to go around the world. They were far from what I needed to relieve the horrendous pain. Nothing took precedence over pain relief. I was more than insistent about needing the pain medication to the point of begging every person in a white uniform for help. Having never been one to use pain medicines, I was shocked at my insistance.

Fortunately, I was admitted into the hospital promptly. As I was being wheeled to my hospital room, the reality of my situation hit me full force, and I started crying uncontrollably. I was convinced that I was going to die from an undiagnosed ailment before I ever experienced life on my own as a “grown up.”

The nurse stopped pushing the stretcher and leaned over me to ask if she could help. “I’m sure it’s not possible for a human being to suffer this kind of horrific pain and live through it,” I sobbed. She offered the same assurances as the emergency room doctor. “Don’t worry,” she said, “We’ll find out what is wrong with you, but until then, the shot I am going to give you in a few minutes will take over, and you’ll feel much better.”

One big hypodermic later, I was no longer writhing in pain, but I was still conscious of it. The horrendous agony clung relentlessly to my lower abdomen like an imaginary demon hanging on for dear life and wrecking havoc in the process. The rest of my body ached much like a bad case of the flu. Although the weakness continued for weeks, the fierce pain and feeling that I had influenza, abated within the next few days.

Interestingly, my strength began to improve and the pain began slowly to dissipate without any specific treatment. Unfortunately, because the physicians were unable to find a biochemical explanation for my condition and that I was recovering without treatment, they viewed my symptoms with an air of disbelief.

Read how you can become a member of the American Porphyria Foundation here.

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