When the alarm went off at six-thirty I thought my head was going to explode. Not that I had never expected that to happen someday. That the veins in my brain would just erupt, like some sort of sleeping, devious volcano, waiting for the right moment to leap into action and whisk me away, from my bed to a coma, and from the coma to another astral plane, once and for all. But in reality, it was just a pounding headache. What scared me was that this was no simple and pure case of cephalalgia. If it had been a migraine, two aspirins and I would be good as new. But, this was different. My stomach was thrashing about from side to side, like a washing machine with only soap and water, no clothes, going back and forth, up and down, leaving me with a feeling that needed no medical genius or specialist to diagnose as nausea.
I stayed in bed no more than five minutes, carefully analyzing all the symptoms, a total of four, to be absolutely certain my liver was a rotten mess. That’s because the night before I had spent just three short hours having a few drinks with friends at a new bar that opened on the corner of 83rd and 3rd. Cool place, with good music and beautiful people. But, a little dark for my eyes, which we all know could destroy my sight. Well, you might as well know right from the get-go that although I panic every morning after thinking I have cirrhosis or cancer of the liver and pancreas – just so you have an idea of how vivid my imagination can get – I go right on drinking. I must confess that I also enjoy a cigarette after a good cup of coffee or a meal fit for a king. It is this combination that gives me a month full of reasons to believe that one day I am bound to have serious throat problems or lung cancer.
Back to my liver. I woke up and decided to make a checklist of the symptoms before my thoughts short-circuited and I fell into despair. The indisposition alone was enough for me to not want to get out of bed. I had every sign of a liver problem. I also felt a pain in my stomach, right there on the right side, under my ribs, lots of nausea, and I even threw up (three times I had counted so far) I could feel my liver pounding in my chest, alongside my heart, and they both gleefully skipped about and danced in perfect harmony in my rib cage. And that made me very, very nauseous. Although I knew precisely what the doctors were going to tell me, since this was not the first nor will it be the last time I thought I have cirrhosis, I went and called one. Actually, I called many of them.
I opened my phone book, which my friends call DD (dial a disease). I have an updated A to Z list in there with the best doctors in town and their specialties. There are also other possible health care professionals and entities to which I may need to resort to. Such as hospitals and customer service centers of more than 50 reliable laboratories I was able to catalog. Drugstores, all of which are open 24 hours a day and within a 20-mile radius of my apartment. Under the letter H, I had all my hepatologists.
I tried talking to Dr. Richard Ember – with whom I have the most contact with and one of the few who still answers my desperate phone calls – over the phone. But he wasn’t in, so I left a message on his answering machine.
“Dr. Ember, this is Amanda Loeb. I need to talk to you urgently. I have cirrhosis. I’m sure of it, but I need you to confirm the diagnosis. Please, get back to me as soon as you can. It’s really urgent. Thank you.”
With those I didn't know as well, I tried to set an appointment for that same day, early, before they even began working at their office. After all, it was Friday, and it doesn’t look good at all to miss work, especially on a Friday. I confess I find this sort of “veiled” protocol pretty stupid. After all, it isn’t as if we can choose the most appropriate day to get sick. I was only able to get squeezed in at one of them. I had to practically beg the secretary to find me a little opening in the doctor’s extremely tight schedule, according to her.
“Brenda, your name is Brenda, right?” I asked trying to win her over.
“That’s right. Amanda, unfortunately Dr. White’s schedule is booked for the day. I’m certain he would love to see you, but it just won’t be possible.”
“Brenda, please! Take another look. Check if someone hasn’t confirmed an appointment? I’m having a liver crisis. If my diagnosis is correct, I only have a few months to live. In that case, waiting one week for an appointment is out of the question. Please understand, I don’t have much time,” I begged.
“Look Amanda, what I can do is schedule you as his first patient since I can’t squeeze you in anywhere. I’ll tell Dr. White to arrive 15 minutes earlier than usual, but if he can’t, you may have to wait to be seen if the other scheduled patients arrive on time. Is that all right for you? That’s the best I can do.”
“That’s great for me. I’ll get there before Dr. White starts seeing his patients. Thanks a lot, Brenda. You’re an angel.” I said, clearly trying to flatter her. Many people in Manhattan hate that type of buttering up, but I could tell she liked it.
That’s when I paused to reflect. I had never stopped to think about so many people, who like myself, suffer from silent cirrhosis and have their symptoms masked by a Thursday night of drinking with their friends.
After insisting I truly had all the symptoms of cirrhosis in its critical stages, and that perhaps I would be dead by next week, Brenda reluctantly agreed to give me the first appointment of that morning. And so, I went.
First, of course, I needed to study my case so I would be ready with technical terms and arguments when it came time to give my report to the doctor. I have to feel confident about my own diagnosis. So, I went to my personal library, my collection of health care books that range from: YOU: The Smart Patient to Merck Manual of Medical Information (the updated version!) and including The Complete Manual of Things that Might Kill You: A Guide to Self- Diagnosis for Hypochondriacs, where I saw my disease as crystal clear as mineral water. I had now completed my diagnosis and knew precisely what I had. It was a lesion in my liver cells, the hepatocytes, which results in the formation of fibrosis. There was no cure and it could EVEN lead to cancer. There you go. CANCER. That was just the word to drive me completely insane! I have cancer!
I called my mom. Actually, I do that every time I go into a crisis. After all, being a mother goes beyond giving birth. It is necessary to participate.
“Help, help... You’re not going to believe it (I think she thought: I bet I won’t!), but I’m going to die.
“Good morning to you too, Amanda.” She answered calmly, before hearing me out.
And after one of my nosophobic speeches, I made the poor thing go to the doctor with me. I swore this time it was true. She would hear right from the mouth of a specialist that I have the worst of all diseases found in humankind (a malignant tumor had taken over my liver!) and I only have a few months to live.
How it all began...
I really can’t pinpoint when this all began. Can anyone tell me when depression sets in? Precisely when someone becomes an alcoholic or drug addict? When anorexia takes over a healthy creature’s body and soul, transforming it into something pale and corpse-like and full of vanity? Which was the first drink or first drunken stupor that led to an alcoholic existence until the person realized he had to go to AA meetings? Can anyone do that? I can’t either.
When it hit me, I was already refusing to greet people with kisses on their cheeks, claiming I had a horrible cold. I would place my hand over my mouth and simulate a cough and hoarseness. And that was just to avoid contact with anyone's dirty skin. Who knows what sort of virus people are carrying! Who knows what their habits are in terms of hygiene, if they have any at all? Carrying around my own viruses is more than enough, and Interferon is an extremely expensive medication! Besides, in my research I have already read that a person’s mouth is a source of countless forms of contamination. That a bite from a human being (how ironic) can even kill. I am an intelligent person and as such I have decided to not run any unnecessary risks. When I understood I needed help, it was already too late and I was walking around with my antibacterial hand sanitizing gel in my handbag, disinfecting my hands after opening each and every one of the thousand doorknobs between the ground floor of the building and the room where I work in a nonprofit company.
My mother tells me that when I was about five years old, I would watch her carefully take care of my grandfather who was suffering from a serious case of pneumonia. It was so strong he didn’t make it. She often diminished her functions as a housewife and mother to a maid. She dedicated herself exclusively to grandpa. I remember how that bothered me. I loved him too, but I didn’t understand his pain. I was just a child, and as such, I couldn’t understand why she, of three children, had to abandon her husband and daughters to dedicate herself full-time to this task. Obviously, today I understand.
Months later, she says, I had already demonstrated my first signs of insanity. I would feel feverish and get the chills just to get her and my father’s attention. While my youngest sister, beautiful and so talented, only had to smile, I had to succumb to pharyngitis or, in extreme cases, tuberculosis. And all I had to do was cough twice and the world would begin spinning all around me. Now you can begin to fathom why my little sister “hates” me to this day.
However, as only natural, I disagree with this version of my sickness saga. I can’t accept the fact that the truth could be so simplistic: A girl develops a very serious mental disorder just to call her parents’attention. Just to get ice cream and toys or to miss a few days of school.
What I do remember is that at the age of 14 I was already walking about with a clinical medicine book under my arm. I loved reading works like The Pill Book or The Johns Hopkins Complete Home Guide to Symptoms and Remedies, while my friends read those sugar sweet novels by Nancy Drew or books that were in like Christiane F. I watched every episode of Mysteries of Medicine, and I’m still obsessed with every medical-based TV series. I would discuss the most whimsical syndromes with my doctors to the point of driving them and my mother insane. My friends thought I was going to study medicine. But, people could never understand that reading about medicine was not my hobby nor something that gave me pleasure. It was downright despair. By the way, that is how, ready to begin a brilliant medical career, I went to study Law at Yale Law School in New Haven, Connecticut. And during the time I wasn’t going nuts because of every pore in my body that was functioning improperly, I was studying to be the best in my graduating class.
In other words, I have no idea how my paranoia began. What I do know is that I am far from well and my panic attacks are getting more and more frequent. I’ve been able to make totally insane associations. I can transform a simple toothache into maxillary cancer. An itchy elbow becomes an urticarial eruption, and a simple sneeze, pneumonia. That’s why I have already thought about joining a help group, like HA – Hypochondriacs Anonymous - to give vent to my “many probable diseases,” neuroses and eccentricities. And who knows, maybe I can find a boyfriend who can put up with me for another three crises. The other probable hypothesis, speaking rationally, is to surrender to my mother's constant pleading and finally seek help from a psychiatrist. Which I absolutely refuse to do!
Just as I was walking out the door, the phone rang. It was Dr. Ember. He had heard the brief report about the case, gave me a short list of exams, which I carefully took note of, and promised to take on my case. Now a little calmer, I went for my appointment with Dr. White.
I met my mother in the lobby of the building. As soon as we got to the right floor, we could see Brenda. She was sitting behind a counter organizing medical charts in a file. As soon as she saw me, she blurted, “You must be Amanda?” She most certainly detected the despair in my eyes. “Yes, I am.” I answered a little uneasily. “Dr. White hasn’t arrived yet, but he shouldn’t be long. Please sit and wait,” she said.
Of course, I’ll sit and wait. Where does she think I can go with my liver in this state? Does she think I have somewhere better to be? Perhaps a party? Or that I have the physical disposition to run a marathon?
When Dr. White arrived, my mother and I were still the only ones in the spacious waiting room. So, as soon as he settled in, he came right out to call us in.
Both of the doctors I consulted asked me for the same things (I think there is some sort of medical conspiracy against my person and I need to reorganize my phone book, perhaps including doctors from New Jersey to break up this cartel).
Blood tests, an assessment of hepatic enzymes, an ultrasound, and a few others. "And the biopsy?" I shouted before the visit finished as he had yet to ask for that exam, crucial in my opinion.
“Isn’t anyone going to examine a piece of my liver?” I would not calm down until someone came in with at least minimal knowledge of our language—as we all know, that is not a strong point for doctors—to explain my problem, or lack thereof, in details.
“Amanda, calm down and let Dr. White do his job.” My mother was visibly embarrassed.
“Amanda, what you have cannot be cirrhosis, don’t worry,” said Dr. White.
Don’t worry? I thought. How could I not worry if the only thing I do is worry. Day and night studying and thinking about the next perfidious illness that was going to attack me and leave me in a bed for the rest of my days. While I was fighting my thoughts, he continued explaining my case to my mother, who listened attentively.
I ran all the required tests and waited for the results. Two hours later, without further delay, the visit continued more or less from the same point it had stopped earlier.
“The exams we’ve already analyzed are sufficient to ensure us that what Amanda has is no more than a heavy hangover." He said that almost smiling. I could feel my mother’s eyes burning into me, wanting to exterminate me. Meanwhile, he went on.
“A patient with real cirrhosis (and he looked at me) will have redness in the hands, red blotches on their stomach, enlarged liver, edema (swelling) in some parts of the body and a series of altered results in lab exams.” He spoke slowly. Besides my dizziness, nausea, vomiting, and pain, which by that time were already affecting my soul, I had nothing that could be considered a symptom of cirrhosis.
I paid for the appointment up front because Dr. White is one of the best in his area, and as such, he does not accept health insurance plans. I paid in cash, while my mother watched, bewildered by yet another blow to my finances. This time nearly six hundred dollars between the visit and exams. I will uselessly try to get my health care plan to reimburse me, and, as always, I can already see the rejection letter.
“We are sorry to inform you, but these expenses are not reimbursable, blah blah blah blah...” And I’ll just have to deal with the health costs on my own.
I walked back to the office, just fifteen blocks from Dr. White’s. My mother angrily abandoned me at the subway station on 77th and Lexington. On the way, I stopped at Crumbs Bake Shop to get a large decaf coffee with “plenty of sweetener” and a large slice of cake with “plenty of fat and sugar.” I know how absurd that seems, but what can you expect from someone who swears a hangover is actually cirrhosis? To be sensible? After all, I had to take advantage of the fact that my liver was in such good shape. I continued towards the office on 72nd and 3rd. In my hands, I held my snack and a prescription for two medications: an analgesic and an antacid, and the recommendation to drink plenty of water.
I was still unconvinced my illness was not something to be taken seriously. I arrived at the office and went directly to the chapter on liver diseases in my clinical medicine bible (I keep a compendium at home and one of those pocket books in the drawer at my office). If I don’t have cirrhosis yet I am at least going to begin preventing it! I need to give my liver a vacation! Tomorrow (if there is one), I will become a teetotaler. I will not drink anything with an alcohol content greater than 1%. I will begin a diet (tomorrow!), with little protein, little salt and little sugar, so my liver can rest. Since there is no shortage of medications for the liver, thank God, I will leave conventional treatment for when the disease stops being so stubborn and shows the doctors, especially Dr. White, that it isthere, hiding, silently, waiting for the right moment to leap out and attack. And I truly hope that day comes quickly, otherwise, it may be just too late for me.