Christopher Paulsen had surgery on December 7, 2001, to replace two sections of his aorta. Various complications resulted in Christopher's death on February 27, 2002.
I have Marfan's syndrome, and suffered a descending aortic dissection on April 1st of '97. I got on the net shortly after, and found great comfort in the information and camaraderie I found there. At the time, I was in almost constant communication with Angela Herbert and a host of others who gave me immeasurable amounts of support and information.
I had a kind of exciting day on 8 June, 1997, it was the first day I've felt really really good since the dissection on April 1. Between the drugs, the healing, and the boredom during my recovery, I was always tired. Not like a low blood sugar tired, a general weariness from artificially lowered blood pressure. I don't know if my body is growing immune to the lisinopril, and my pressure is rising to humane levels, or if I am actually getting much better, but it was great. I see a doctor again in two weeks and he'll probably up the dosage as a result.
I was diagnosed almost at birth. The joke is that after the doctor spanked me, he said I'd be a basketball player. The official diagnosis came when I was five or so. I have all the classic symptoms, including a pectus excavatum. That was all well and good, I didn't care because the heart problems were nowhere to be found. I had everything - bad eyes, high palate, scoliosis (minor), long limbs, the chest thing, lack of elasticity in tendons, bad feet, but no heart problems at all. So I didn't care, except that people looked at me funny at the beach and opening lines were usually, "Let me see your chest!"
When I was thirteen I had pneumonia a lot, and it was determined that my growing rib cage was pressing on my lungs and the 'hole' would have to be removed. That was fine with me, I was tired of being a freak of nature anyway. Twelve hours on the table and six weeks after the operation, I was back on the beach body surfing (my surgeon blew a gasket when I told him that) with a shiny new scar almost two feet long and lots of stories about hospital life. I was young and indestructible the way kids are. I could bounce back from anything, and I think my doctors grew excited by the rousing success and decided to try and fix my terribly flat feet. At age 15 they tried to 'lift' the bones on the top side of my feet to artificially create an arch. 8 hours on the table, three weeks in the hospital, and six months sitting on my butt. Almost fifteen years later, I still don't think that procedure was a success. I still have chronic pain, all the staples in my feet intended to keep the bones in place are broken, and now I wear an orthopedic insole that is as painful when I do wear it as when I don't. As a result of that experience, I will never go under the knife again unless its a matter o life and death.
So I've always been told to look out for heart problems, and get an echogram every year. Well, years and years went by without anything. No incident, no widening of the aorta, and no answers to my questions, "What would happen if something did happen?" No one seemed really sure about anything. My first year in college, I read an article about a star swimmer at my school who croaked immediately when he hit the water - he had IT. I knew then that that's how I'd go. I'd be standing on line at the bank, the teller would say, "Next!" and I'd hit the deck with a beatific smile on my face. I knew innately this would happen by the time I was 30. So I gave up on the echograms after a while. They were just a waste of my time because nothing ever showed up, and if something did I wouldn't want to know about it anyway.
I don't know if I'd say I was/am depressed. I think about death a lot, and I have a very nihilistic 'what's the use' attitude toward life. Food for worms. So when I felt this incredible pain on April Fools Day of my 29th year, my first thought was what an honor it will be to die on this day. I was watching television, when this small cramp in my back blossomed into "My back feels like its on fire," then into, "This is the worst pain I've ever felt," then "Oh, its much worse now!" In the space of five minutes, I knew I was going to die. My endorphins kicked in, and I was outside my body as I watched myself put items into my pockets that would identify the body. I lay down on my bed and commenced to wait. I just wished the pain would go away, and considered knocking myself out with alcohol and drugs. Well, after a minute (literally) I knew I wasn't going to cash in, and that I was just going to be miserable for quite some time so I might as well call 911. The pain started at 1:45, the ambulance arrived at 2:00, and by 2:20 I was diagnosed with a dissecting descending aorta, and they were going to operate.
My mind and body were racing. I had never been so lucid in my entire life. I think it was due to the endorphins that were racing through my system as my body went into overdrive trying to stay the pain and keep that damn heart beating. As they were explaining the logistics of the surgery to me, word came down like a 100 ton anvil in cartons, "He's unstable!" "What does that mean?" I asked between gasps. "It means your blood pressure is too high, and we have to wait until it stabilizes before we can operate. We're going to keep you in ICU on blood pressure drugs until we can operate." That was the last lucid thing I remember for ten days.
As for my condition, my pressure would be really high until the morphine took all the pain away, at which point my body would shut down and my blood pressure would drop dangerously, then my doctors freaked and tried to get it back up, and it would skyrocket again; Mr Toad's wild ride for those interested in seeing me live. As for myself, I already knew I was going to live, so I wasn't worried. Nothing worried me. They were pumping me full of morphine. I had terrible hallucinations. When you're just whacked out on opiates for days on end, everything disintegrates, and I mean everything. Time is the first to go, then reality altogether. Three months later, I am still having difficulty piecing together that period. I don't want to go too deeply into my hallucinations, suffice it to say it was very difficult for me and those around me at the time and I thank everyone involved for not stringing me up from the nearest tree!
They never did operate, thankfully. If I had been reasonable at the time of the dissection, I probably would have refused the procedure. I don't think wrapping a garden hose in duct tape is an especially good idea. So here I am. My diameter is well below 3 cm, and I don't really know what to do with myself. I have lived my life in preparation for the end, and now I've passed beyond my assigned point of departure. My friends make fun of me saying, "Mowing the lawn will never be the same again, eh Chris?" I wish it was that simple. Its not that I have always been depressed fearing to live life. Quite the opposite actually, I am known as completely care-free live life for the moment kind of guy. But big things like girlfriends and careers and life influencing choices were never a thing for me because, frankly, who gives a damn? Food for worms. Now I don't really know what to do with myself.
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