punkwalrus (punkwalrus) wrote,

The biggest misdiagnosis

When I was 18, I had a doctor that was pretty bad. He was a really old guy, and was my mom's doctor after my pediatrician had to explain to her, "Your boy is 15. I usually don't see anyone past age 12. Find a grown up doctor, ma'am." So I saw her doctor. This guy moved like he was afraid he'd fall at any moment. Mostly bald with a little bit of white hair accenting his age spots on his skull, he spoke like he was very, very tired. I didn't like him because he was one of the two doctors that had prescribed what I considered "virtually unlimited tranquilizers" for my mother, which she used when she drank. By age 12 or 13, I realized my mother was a drug addict as well as an alcoholic. I always found her pill bottles lying about when she was passed out with his name on them.

It was January 6th, a Tuesday, and I had just gotten back from EveCon 4, where I was a guest artist. I had some medical tests done in December after a lot of begging and pleading. I wanted to know what was wrong with me. For the last few years, I had trouble with randomly passing out, sudden and rapid heartbeats, irregular heart patterns, and gasping for air for no good reason in the middle of calm activity, like reading a book. Sometimes I felt like a bear was sitting on my chest, squeezing my esophagus and hammering it with a solid rapid thumping. I hadn't been to gym or PE in years, but when I was, after about age 13 or so, once in a while, I would get these massive PANGS in my chest that spread down my arms. In some cases, it would hit so hard, it would knock me down like I had been hit with a hammer. But I was told it was in my mind, get up, stop faking and being dramatic, and so on...

The doctor took my mother and I into his a small examining area and said, "I have looked at the test results. And... ah..." he looked very uncomfortable. "There's never any easy way to say this, but your son's heart is in pretty bad shape."

The symptoms seemed to get better when I was in my junior year of high school. Maybe I was allergic to gym. But when the senior year started, the problems started to affect my day-to-day life. I found it hard to walk up stairs. I often spaced out or got dizzy. I'd lose chunks of my time, sometimes for hours. My face would swell up or get hot for no reason, and I felt like something was straining inside of me, like it was going, "GNNNNRRRRRRNNNGGGGGG..." and making it hard to concentrate. I had constant chages of heart rates. I wasn't fat, either, I was about 180, which was good for my height.

"I knew it," I thought. "My heart is bad." I felt vindicated. But I was not prepared for the rest of the explanation.

"He's got a congenital heart defect. He was most likely born with a lump on his left ventricle. As his heart grew, the affected area did not grow with the rest of his heart. Thus, he almost has a 3-chambered heart, and blood flow is understandably strained. He's got very high blood pressure, in fact, it's extremely dangerous. I am going to put him on medication right away."

Oh crap. Tranquilizers?

"Starting right now, we're going to put him on a donor list."

"For what?" my mother asked.

"For a new heart. The list is pretty long, so I am not sure how long the wait will be. Months at best, possibly a year or more. But he's got to have that heart replaced, and replaced soon."

"A heart transplant?" my mother asked. The shock was in her voice and suddenly, I got this "Alice in Wonderland Syndrome" I get when I am facing shocking news. Not sure why that happens, but everything seems to get really small and like I am looking through the wrong end of a telescope. If I shake my head, it clears sometimes, but often it will zoom in and out. It was definitely one of those moment that you remember exactly where you were. As I type this, I can feel the smooth leather on the examining table, the contrasting crinkle of the paper that covered it, the bumpy texture of the wallpaper, and the hum of the lights above me. This was... wait, what? My heart is THAT bad?

"I won't lead you on with false promises. There's only a 35% chance he'll make it, but those odds are good because of his age. I am not sure what the stain has done to his other organs like his kidneys and such but..." and his voice faded out.

Holy crap. My heart needed replaced. My HEART. The most important organ of the body. I was stunned. I didn't know it was that bad. This can't be happening.

The end result was that I needed a lot of medication to keep my pressure down. No strenuous activity. And things did not look good. People who had my heart defect rarely lived past age 10. The fact it went undiagnosed for so long was even more shocking, and probably reduced my chance of recovery because of the prolonged damage to the rest of my system. Of course, I complained about these problems for years, but I was told I was being dramatic and making it up.

I went through a lot over the next few days. Shock, self-pity, anger, and so on. What about my college? What about everything else? My mother, in her habits, started drinking right away. On Friday night, January the 9th, we had a HUGE fight. My dad was out of town, so it was "safer," I guess, to scream at one another and know he wouldn't get involved. But I felt like even though I was fucking dying, my mother was still doing the same old shit she always did: drink to avoid dealing with it, and I was so upset and alone.

Of course, now I see it a little more objectively. I wonder if my mother felt that she had wasted all this effort to raise and protect me, only to have it end with, "Ha ha, you're son's gonna die. Sucks to be you!" Like a crescendo of ultimate failure, and a reality that she could not escape. That must have sucked, big time.

Most of my close friends know what happened next. The big fight ended when she tried the angle, "Don't you love me? Don't you care about me?" And I was thinking, "You? YOU??? I am the one who has just been told I have less than 2 years to live! Goddammit, you are NEVER THERE FOR ME! I AM SICK OF TAKING CARE OF YOU, CLEANING THE HOUSE, PICKING UP AFTER YOUR MESS SO MY DAD DOESN'T BEAT THE SHIT OUT OF ME!!! AAUGGH!!! AND NOW AFTER SPENDING YEARS SUICIDAL AND GETTING OVER IT BEING TOLD I AM GOING TO DIE AND IT'S ABOUT YOU???" I might have actually said that, who knows. I do recall the last thing I said to her, though. "I can't love you. I can't love you until you learn to love yourself."

I have no idea where that line came from. Maybe I did back then. I remember feeling clever, and I ended the argument by walking away from her, leaving her there standing and saying nothing. I slammed my bedroom door, and cried for a while until I fell asleep.

I woke up the next morning, she was dead. This story is long and covered elsewhere.

After THAT shock wore off, I remember the week after she died, thinking, "Wow. There's only two people left in this whole world who know about my heart, me and my doctor." My dad CERTAINLY doesn't give a shit about me, and I wasn't going to tell him a damn thing. I didn't tell my friends, either. I am not sure why. It was probably for the best given that... well, I am now 40, and not really dead.

Shortly thereafter, I was sent to a mental hospital because my school thought I'd be suicidal (they had had three suicides in the last four years, and were not taking any more chances), but I was released a month and a half later when it was determined that my mother's death was a "normal reason for depression" and I was "not a threat to myself." I never told anyone about my heart condition for years, even my best friend, just thinking I'd up and die and no one would care, and that's life. A few times, I wanted to die. "Bring it on! I have been waiting for you!!!"

Truthfully, I didn't want to face it. In fact, I first told someone about it when I lived with Bruce and Cheryl in 1988. I told our roommate Liska, because I had been having obvious problems she was concerned about. She was stunned. And then I don't know what she did with that info. When I got engaged, I told takayla, who didn't react one way or another, and many years later told me that she kind of went into this denial about it.

For many years, until my mid 20s, my mental mindset was this looming "I am gonna died any moment now... yep... just waitin'..." But my health improved. After years of tests and obviously not dying, it dawned on me that the doctor might have been wrong. The same doctor told me I was sterile and gave my mother unlimited tranqs, too. And over the years, it would seem that while I do have a heart defect (my son was born with it, too, but his got operated on and fixed when he was born), most of my symptoms could be attributed to other things, like asthma, high blood pressure, massive stress leading to a nervous disorder and panic attacks, and an incredible lack of proper nutrition because I used to go days without eating as a teenager and think nothing of it.

So, in many ways, I have felt a little silly. Part of me fears no one believe my tale. If I died right after I wrote this, I doubt I could even peep, "I told you so," because... wow. Twenty years? That doctor was really whack. Of course, facing my own mortality for so long has yielded enormous spiritual benefits like you wouldn't believe. The thought of dying has never scared me properly since. In fact, when my time comes, even if it's "untimely," please don't mourn my passing. I am lucky enough to get this far. I feel I have completely been running on bonus rounds for 20 years. Not that I want to die, just yet. I have stuff to do. I want to see certain favorite kids I know grow up. I want to stick around for the 2010 iPhone. Get published again.
Tags: childhood, death, mother
  • Post a new comment


    Anonymous comments are disabled in this journal

    default userpic

    Your reply will be screened

    Your IP address will be recorded