Hesitating over the publish button

Warning: this is a super long post. I’m sharing something I wrote for my writing class about a time when I was judged. I have this weird disease and I’m sick a lot. But if you were to look at me you’d think I was perfectly healthy. I reread the piece and made some edits but I’m not 100% happy with it. I almost think I should re-do it from scratch because I feel I’m leaving something out but then again I don’t think I will ever get it to what I want. These are just a few snippets of what it’s like.

“You look completely normal but you’re a freak.” I eyed the seventyish, red-faced doctor who just spoke those words to me. Who is this guy with the tufts of white hair escaping from his balding head, a white lab coat near to bursting against his portly girth and where did he leave his bedside manners? I didn’t respond other than to give him a look I’d honed over the years when people discovered my insides didn’t match my outsides. No one had called me a freak before, though. At least not to my face. I didn’t take much insult, having heard many variations of surprise like this before.

I already knew the diagnosis before he did but I let him get there on his own. His stethoscope dangled precariously over his belly as he announced it was likely pneumonia but he wanted to send me for an x-ray to be sure. I didn’t need an x-ray to confirm what had dragged me reluctantly to the Saturday walk-in-clinic of my doctor’s practice because I’d been through it many times. I collected my paperwork and made my way to the receptionist where the nurse and doctor were gathered, on what looked to be a slow walk-in day for patients, animatedly discussing my “condition”. The nurse said she had just read a book where twins had the exact thing and highly recommended it to me as if reading it I would unlock some deep mystery about myself. I joined the conversation as a casual bystander, listening as they discussed how unusual I was, etc, etc. After a few minutes, a new patient took their attention and I was on my way.  I marveled to myself that I could add such excitement to the day of a long-tenured physician who probably thought he had seen it all.

I was diagnosed with this condition from birth since my brother, who 6 years older, had been shuffled among doctors for the first five years of his life until a specialist in the disease of Cystic Fibrosis definitively gave it a name. Kartagener’s Syndrome with Situs Inverses. In layman’s terms, the cilia in my body are dormant which leads to a high incidence of lung infections and my organs are also reversed. It’s the reversed organs that amazes them every time.

My earliest memories are of our mother taking my brother and me on quarterly trips to Albany Medical Center, a two-hour drive from our small town nestled in the Adirondacks because this was the closest medical facility that understood about Kartagener’s. Here, my brother and I were subjected to lung function tests, sputum analysis and then finally a face to face consultation with our doctor who looked suspiciously like Captain Kangaroo, a guru of children’s morning television back in the seventies. I didn’t feel like this was anything unusual when I was a kid. In fact, it got me out of school, a lunch at Lum’s where I always ate a grilled hot dog on a butter toasted bun and then we were always greeted like rock stars at our doctor’s visit.

The downside, however, was I was sick a lot and hospitalized on a regular basis. It surprised my mother that I recalled a time when I was two or three and was hospitalized at Albany Med where I was in a crib covered with netting and that I was deeply unhappy about it. There have been times I have thought, this is it, the end, only to have antibiotics kick in a day or two later and then start to feel almost normal again. As I said, the hospital visits have been frequent and many times I arrive in the emergency room to unsuspecting doctors where a lot of detective work happens by hospital staff as they try to figure out how to treat me.

When I was eight, we were celebrating someone’s birthday at my grandmother’s house. My mom had made the cake, a tiered chocolate concoction with a seven-minute frosting that created fluffy, marshmallow-like frosting and I snuck copious amounts of it as she was putting the base together. Once it was frosted, I licked the bowl and spoon clean. The result, a couple hours later, was an extreme bellyache and I spent most of the party lying on the floor of my grandmother’s bathroom until finally, my mother insisted we go to the emergency room. I thought I was going to die from the cramps in my lower abdomen. We arrived at the ER of our small, local hospital and the on-call physician started his exam. He pulled out his stethoscope and began listening to my lungs and heart and was dismayed by what he heard. The rattling of my lungs was of great concern even though that’s not what I had come for at all. He promptly had me set up in a room for an overnight stay where he could set about fixing my lungs.

You might wonder why my parents didn’t step in and tell the doctor I had this condition that made my lungs not function properly and that I had a doctor in Albany who took care of me. I think they must have been hoping a new doctor could find a different way to make me well so they let him experiment with me for the week. I was unhappy at the state of being a guinea pig but I didn’t know what else to do. The doctor tried some different therapies to loosen the fluid that clogged my lungs. He asked me to lay upside down over the side of the bed until I was dizzy and then he had a nurse pound my back so the loosened fluid could come up. After a week of this, he didn’t see much improvement when he listened to my lungs and let me go home, a bit defeated he hadn’t been able to cure me.

After that, we pretty much stuck to the doctors who knew me and had been treating me since I was a baby. As I became an adult and responsible for my own health, things really got interesting. A few days before New Year’s Eve when I was a sophomore at Saint Rose in Albany, I was hospitalized with pneumonia. My doctor from childhood had long since retired so I didn’t have anyone in the area that knew my health background or how to treat me. I found myself explaining again and again about Kartagener’s and how they should be treating me: which antibiotics, how often I would need breathing treatments and that no matter what, they weren’t going to be able to fix my rattling lungs. Once I was released from the hospital, my boyfriend helped me identify a pulmonary specialist who is still my doctor 30 years later.

The cycle of my disease has mostly been unpredictable. One day I can be running full steam ahead like a fast-moving train, only to find myself with chills, a fever and gasping for air a few hours later. These instances usually bought me to unscheduled appointments with a doctor who didn’t know me (it was hard to get into my pulmonologist with no notice) and I would be forced to explain all over what was going on. The waiting room at the Pulmonologists, usually brimming with elderly, oxygen connected people, was a place I never felt I fit in. My youthful, unencumbered body seemed to beg the question “what are YOU doing here?” The new doctor would then look at my chart and exclaim about my reversed organs, asking how rare it was and if everything was backward or just my heart. Once the novelty wore off, they would set to work on trying to find a new way to treat me. Something my regular pulmonologist may not have already thought of.

Emergency room visits were my least favorite activity because I had to tell multiple people the same story again and again. The check-in desk got the bare bones about my current symptoms. Once, a woman clearly suspected I had been doing drugs because I was in such rough shape and could barely speak. Next was the nurse who needed more detail and then the doctor who would have me repeat everything, often leaving to do a bit of his own research before finally sending me for an x-ray. There was an occasion in my late 20’s where a flustered x-ray technician came to visit my ER stall to tell me he had to re-take my scans because he’d put the film in backward. I gently explained that he’d likely gotten it right and that it was my organs that were backward. It took a while to convince him I was telling the truth.

That visit landed me in the hospital for a few days and I was forced to take a time off from my job. I never told my supervisor anything more than I had pneumonia because I found explaining it to lay people was just too much information for them. Rooms were scarce and I was placed in the pediatric wing in a four-bed room where I was the only occupant. I’m not sure if technicians didn’t read charts in the mid-nineties but each time they came in the room to give a treatment or take blood, they would inevitably start asking me about school, what grade I was in and if I like my teachers. It didn’t help that I had a youthful appearance and I was forced to explain over and over that I was only here because they didn’t have rooms on the adult floor and that I was 25. Finally, late in the week, a clown bearing ice-cream sandwiches stopped for a visit. I was still the only patient so he bounced over to my bedside and in an animated voice as though he were talking to a small child, he tried to “cheer me up” with his jokes and treats. Tired from my week of prodding and no sleep, I unhappily told him I was 25 and I didn’t want ice cream or cheering up. I did feel a bit sorry for him as he slunk out of the room.

A few years later, once again hospitalized with pneumonia, an intern came to check on me. He asked if he could listen to me and I’m sure he didn’t read my chart because he spent ages listening for my heartbeat until he finally settled his stethoscope on my right side.  After removing it from his ears he asked if anyone had noted that my heart beat louder on the right. With a barely contained smile, I explained my heart was on the right side and that most of my organs were flipped. His entire demeanor changed and he was lit with an enthusiasm I rarely see in doctors. He asked me if I minded if he brought in some of his fellow interns and asked me not to mention anything about my organs. He was going to ask them all to listen to me and tell him if they could detect anything unusual about me. Because he was so full of liveliness for this, I didn’t want to let him down and allowed him to bring them in. There were about six of them and one-by-one they listened to my lungs and heart. He could barely contain himself before he finally blurted out my condition and waited for the awe and amazement of the other interns.

Other times, it was the technicians who were fun to toy with as they were trying to decipher something about what they were seeing in the scans. Once, an x-ray technician asked me, with great trepidation, if anyone ever told me my heart was not on the left. I exclaimed in surprise. “What? Really? How can that be?” When he became red and flustered, I told him that, yes, I knew, I was only trying to have a bit of fun with him. It only made sense to me that if people could be repeatedly surprised by me, surely, I was entitled to a little fun myself. I never did it again though. Another instance, a technician set me up in a cat-scan, sent me into the tube only to pull me back out a few minutes later to tell me my organs were not in the proper positions. I told her I knew and let her know the name for it so she could look up more about it if she wanted. Sometimes I was tired of explaining everything myself.

These days, my health is monitored by several healthcare professionals who have known me for a long time so the occasion where I need to explain myself is infrequent. A couple of years ago, I was to have some pre-op tests done at my primary physicians and a new nurse whose first language was not English was in charge of my echocardiogram. I explained she would need to set them up mirror opposite to what she usually did because my heart was on the right but she didn’t believe me telling me “impossible” in a harried voice. Eventually I asked her to get the PA who was overseeing the day’s exam and I didn’t end up receiving the echocardiogram and haven’t seen the nurse again since.

I always have a cough so I usually tell people who don’t know me that I have a cold. With others, I tell them I have something like asthma or bronchitis not going into specifics about my disease.  I’ve had to do my own research and be my own advocate when it comes to my health. After I was unable to become pregnant after several months of trying, I found a link between Kartagener’s and infertility and could point my doctor toward IVF where I was able to become pregnant. I know what drugs make me sick and which are best in combination when I have both a lung and sinus infection. I know when I need a steroid to rejuvenate my lungs and how to taper the dose. I’m aware that most people look at me without a clue as to the intricacies of what goes on inside. I’d like to think I’m not a freak, though.