the story

I suppose in some ways I have lived my life backwards, from a literal end point rewound to the beginning. Instead I started at the end, the point where lifelines are faded, my memories are groggy, and metaphorical mortality became a blood-stained reality. The pictures of my youth are a montage of IV tubes and stapled skin, tar-colored Betadyne-stained bed sheets and the X-ray tech carting around a portable machine, slipping the cold slab under my back, and walking far enough out so that I was the only one aside from my roommate radiated, it is of 4 am bed checks and blood draws, skin so purple and veins so busted that my fingers often were the only openings to the well. It is a picture of a mind so lost inside itself that all I could do was not only cry in pain for what I hadn’t done, but also what I had chosen to do, an assuaging of guilt that I hadn’t used my time so effectively.

My whole adventure with cardiac issues started 2 weeks before I turned 19 when the earthquake finally hit, knocking me breathless on my back. The quake started morphing into a very acute stabbing pain that left me breathless in the bathroom, numbness spreading from my toes up to my hips, screaming because I could not walk nor feel my legs at all. I’d had similar moments of that kind of pain before, and I thought I could breathe it off. So my boyfriend called 911, and when the paramedics arrived, they told me there was some flu going around everyone was getting and that I might get sick, but for now I was just hyperventilating. They gave me the old school paper bag as a solution to my “heavy breathing problem.” Sure enough, within a few hours I was vomiting, but it was blood that I did not recognize, not understanding that blood turns brown once it hits bile.

The next day I was in the Emergency room, my neck having swollen up with blood to the point where I resembled more of a woman with Down’s syndrome than a teenager with the flu. The same stabbing pain was there, and it remained there even after the procedure to drain it for a good 11 days. My neck, though now shrunken, betrayed a deeper issue. When my visitors saw me, they could see that my heart was beating so hard, my gown would jerk with a strong tug. With a blood pressure of 280/210 one would understand its new visibility, but it never seemed to click with the doctors that something beyond controlling my blood pressure was wrong—The final test, the echocardiogram, betrayed my body’s secret. An aneurysm, later coined “dissection,” had appeared on my thoracic descending aorta, and had not only caused the chest pain and blood pool, but had always spread downwards to the abdominal aorta. If you don’t know what an aorta is, it provides the blood to all of your limbs and extremities branching to the head, arms and legs and is located just behind and protected by your spine. My left kidney had been compromised, causing the increase in my blood pressure, and explained the pulse in the gown people had been seeing for eleven days (your blood pressure is controlled in your kidneys). I was in the hospital some 40 days before I was let out, again to gain back the muscle mass I had lost, to heal.

The diagnosis came in post surgically, made with a tape-measure, and through what they saw inside on my aorta, a virtual mine field of bubbles, all needing repair at some point, a little disease called Marfan’s Syndrome, a diagnosis they were wrong to officially diagnose me with–I had only one symptom, aortic dissection. Most recently we have discovered it was not that at all but a defect in the ACTA2 gene. It’s similar to having a run in pantyhose, the muscle fibers split apart and balloon up and eventually burst.

Some two weeks later, after I reported one of my symptoms,  I was told I needed to go back, so I returned back to my little  prison. I went into this surgery with some “how to” knowledge and realistic expectations. They told me what they were doing this time around, and had some time to plan. The first time I went it, it was just a swoosh of frantic confusion–IVs being shoved into every limb, doctors and nurses everywhere, the oxygen mask deftly slipped over my face before I woke up. This time I had time to think about it, staying up late into the night to consider what would happen. They told me there were risks. They would be waking me up in the middle of surgery to check on blood flow to my legs by asking me to move my toes. And of course, other than the normal concerns of death, they said “we might not have such good luck with that kidney of yours.”

But I did wake up, and  easily moved my toes when they woke me up. Though, the kidney hadn’t fared as well, but its game was a little more painful. Dialysis every day for a few days, then three times a week thereafter, and because I had not been adequately broken in, my pancreas decided to stop producing the enzymes due to its little infection, which meant even water was violently thrown up for a few days.

Needless to say, I was miserable, letting all of my “get well” cards pile up by my cart, unwilling to smile at anyone. I was unwilling to live like that at that time, and I realized that all of my youth-inspired anger and deprecation was absolutely nothing to having lost full control, to having lost half my deck of life, to have the whole pile of cards and chance explode in my face. I had run out of tears sometime before Christmas that year, and just stopped caring enough about anyone or anything. Future and all of that had a foreboding feeling attached to it, and it was then I decided it didn’t matter what plans I had made, because mine obviously had an expiration date.

Sometime after New Year’s of 1996 my kidney kicked in, much to everyone’s surprise. By then, I decided I hadn’t wanted to be there, I had bald spots all over my head and I had shrunken from 155 pounds and 5’10 to a 115 pound sack of bones and misery. I was beyond done in my head, and somehow, my body pushed on, releasing me in February from my hospital prison.

The whole concept of future was a painful thought, not rooted in anything I could touch. So I refused to think about it, I refused to plan. Close to a year and a half later, I was driving on the Mass Pike when that same familiar feeling came in again, a stabbing through to the heart. There I went again, on my way by ambulance to Mass General for my third surgery, and first open heart, a repair to my aortic valve and ascending aorta. At this point everything seemed to be a cakewalk. If I didn’t make it, life had its fill of me. But, I wasn’t really afraid of not surviving, as I still felt compelled to think I needed to do something important.

Six months after found me packing up for New York City to follow my dreams. I was going to be a tattoo artist and it wasn’t legal where I was. I aspired to take my art and have people live with it on them until they died. The idea of someone paying you to put your art on them was my first dream. I hadn’t counted on it costing me money; I figured it was more of a volunteer and learn experience, an even exchange, if you will. Unfortunately that wasn’t the case so my plans changed, and I got employment which supported my consistency in always having health insurance, until very recently.

I knew there were other procedures lurking, a package I referred to as my ticking time bomb. In December of 2005 it all came to a head, and these next surgeries were some of the most dangerous I had ever had because they dealt with blood flow to my brain. Luckily, I had earned health insurance 17 days before the guillotine fell, and left work. In March of 2006 I had two corrective surgeries to repair arterial aneurysms in my arm arteries, and bypass them from my carotid to vertebral arteries as well. These arteries supply the blood to your brain. The first was on my right, the second on my left. I stayed in the hospital from February 28th through March 18th, got out and prepared for my last open heart, that would repair the aortic arch, the last natural portion of my aorta without grafts or staples to keep it together. The plan entailed repairing the entire structure from aortic valve running down along the spinal column to the leg arteries. I went through this procedure on April 22nd. Complications were more severe with this procedure more than any other before it. I had a stroke, igniting some seizures that took the staff by surprise the night after my surgery was done. Calls were made to my parents and my boyfriend at the time to let them know I was not expected to make it through the night, that despite their best efforts, I was unlikely to survive in any kind of recognizable form. But, once again I woke up, ready to kick death’s ass again.

My last of those major surgeries was one to repair my vocal chords, which were almost entirely paralyzed after surgery somehow, leaving me with a very faint breathy voice. They took skin cells from a cadaver, removed the DNA and made this “zombie dust” into a paste which got injected into the vocal folds, to plump them so they would be able to then touch and vibrate normally. My voice still is limited. I cannot yell, I cannot speak loud, and people still look at me quizzically when I am speaking to them, and I often have to repeat myself.

In Denver I had an aortic stent put in 2015 after some issues—a stroke in a yoga class being one of the catalysts for the checkup–I think now the entirety of this aorta is finished–I haven’t seen the results explicitly from the last scans–the reason is medical care is impossible without money I do not have. I have insurance, mind you, just the hospital is suing me for this stent. They didn’t like the measly $90k and wanted $169k more and so–I avoid followups. I have lived with these conditions so long–I think I mostly know what I am doing.


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