Hello, my story is long and I hope it doesn’t bore too many of you.

In Feb of 1993 I was 22 years old. I went out with a friend of mine for a night of drinking away the end of a long bad relationship. We ended up in Pioneer Square of Seattle for Fat Tuesday celebrations at the end of the evening. I remember parking the car, and nothing else significant till 2 and a half months later.

This is what I was told. We left the bars around 1:30 am when they were clearing everyone out for the night. We started across the street. My friend and another person we were with, ahead of me. A truck hit me. I got caught in his undercarriage and was drug up the street 50ft till people forced him to stop. No one recalls whether we were crossing with or against the light, no one, meaning hundreds of people. The truck driver says he never saw me in the crosswalk. He thought the sound of my body, thumping the ground, was his muffler coming loose.

I arrived at the hospital with multiple fractures in my neck, broken femur, fractured ribs, and a head injury. Probably something I forgot, but I forget a lot of things. My heart and breathing had stopped at the scene and I had been given CPR by my friend. In the ambulance I was given an adrenaline shot to get my heart going again. My body wasn’t cooperating. They stabilized me at the hospital finally and everyone thought I would be ok. Not so. I developed ARDS, gained over a hundred pounds in water weight, and had to have my brain drained, due to fluid from a subdural hematoma. I spent about 2 months in an induced coma. I spent over 2 months on a ventilator. Another month and a half on a trach and two more on the rehab floor. I spent just a couple days short of 5 months in the hospital. I went in Feb 23, 1993 I believe and left about on the 21^st of July. That may be backwards or mixed up a bit, but first week of the 20’s in each month either way.

The ARDS
But what about the ARDS you say? Well, it nearly killed me many times. I had over 20 chest tubes placed into my chest. I was one of the worst ARDS patients they had ever had at that time. My pulmonary team tried new things on me, that they had only theorized over before, because the likelihood of my living wasn’t what they considered a reality. My family was called in time and time again to say goodbye to me. I was given my last rites. It is because of some of the things they tried with me, that many of You are here today. If the one thing I have remembered about my life, is that what happened to me, helped others to live, this will be enough. I can thank Dr Steinberg and Dr Hudson for that.

My lungs were extremely damaged from scarring. I functioned on what equaled to less than one lung. But I functioned. I didn’t enjoy walking up hills, stairs were a pain, and I could never go scuba diving. I left the hospital on no oxygen, a walker and my life. That was the best gift I ever received. Till the birth of my son. Also in a sense, given to me by Dr Steinberg and his help.

I recall weird things during the first couple months here and there. I knew I was in the hospital. I didn’t know why. I vaguely recalled people visiting me, though I didn’t always know who they were, just was pretty sure I knew them somehow. I was in such horrible pain. They had me on paralyzing drugs, but I kept moving. They had me on tons of morphine, but I swear I felt everything.

I dreamed and dreamed and dreamed. I was on a rotating bed, so fluids wouldn’t collect in my lungs and hopefully I wouldn’t get bed sores. I dreamed that I was strapped to the side of an amusement park horse going up and down in a display window in the hospital for all to view, and talk about.

I dreamed I was on a wooden ship that was falling apart in the ocean, and was being cared for by Swedish nurses who hated me and poked at me, and cut me. None of them spoke English.

When I was slightly more stable they talked of moving me to a new room next to the large pool of dying people in ICU to a smaller room for just two people dying in ICU. I dreamed an outrageous tale of this also. Too demented to try to even explain.

I recall the tube down my throat all to vividly. I remember a respiratory tech redoing the tapes on my mouth and in the middle of it, walking away and leaving me with the tube trying to force its way back up my throat. I was like this for what seemed like hours, crying, before someone noticed. Im sure it was only 15 mins tops in reality though.

When I was getting better, my parents put a of a painting on the ceiling for me. I stared endlessly at the ceiling. It was the only thing I could look at. I had braces on my neck and could not turn to look at anything. I do not say brace, I say braces. There were more than one. At one time I had apparently 3 braces on my neck, and another time had a halo drilled in my head, I am told anyway. Ick. Glad I wasn’t aware of that at least. Or the tube stuck in the back of my head to my brain. Well the print was a lovely print I was familiar with of a local marina and boats. But my morphined brain kept hallucinating the boats turning into creatures and diving at my face. I knew this wasn’t real, but it wasn’t very pleasant either. I was happy when it fell off the ceiling onto my head, and they couldn’t get it to stick back up. Of course that left the huge blood stain on the ceiling to view again. Another plus of ICU living.

My parents brought in music for them to play to me. My own music but….. Upbeat and danceable and so annoying during my ordeal, it made me want to climb out of my skin. Where were my Enya tapes? Christ.

They put casts on my ankles thinking this was a good thing. I had been in bed for so long, that my ankles were holding my feet in a ballet stance. They thought, golly, she’s in excruciating pain right now, lets add to it. Let’s bend her deforming ankles in an unpleasant angle, cast them up, while her water retension jumps up and down and make her all betta. My legs swelled over the casts and the ignoramus’ waited a couple days, before they relented and took the damn things off. A week or two later, they apparently forgot what happened and tried it again. Had I been able to speak, they would have had an earful. They did get an earful a month and a half later when I could talk.

Yes, they also put me in the CHAIR. What kind of nightmarish beast thought this up? I know, I know. I did need it. But you gain 100+ lbs in water weight, go from 115lbs to 200 something, then to 70 something in less than 3 weeks and shove your butt onto a hard chair for therapy and tell me how you feel. Not to mention the horror of 3 nurses trying to wriggle your 3 months unwashed body on a thin plastic sheet onto a chair, hooked to a million IV’s tubes, catheters and other toys and not be concerned about a 10 min sitting adventure. I have a picture somewhere of me in this chair. It is not a pretty sight.

Eventually I graduated to a trach. Suction horrors plenty. Hyperventilating constantly in sheer fear. Dying for an ice chip from the Nazi water controllers. After what seemed like years, they moved me out of ICU to not so intensive care. I only spent a couple weeks there watching soap operas and the made for TV movie about the bombing of the New York building, which I had been in a coma for.

I finally got to the Rehab floor. I had to rebuild nonexistent muscles before I could walk again. But I got better fast. 2 months and I was out. Finally… I think they finally let me out because, one I could talk again, and 2, I could talk again.

I thought my head problems were brought on by the head injury. After reading other stories, I realize it was probably more the ARDS and it’s effects and lack of oxygen on the brain. I have problems with thinking in general, and interactions with people. This, I am happy to say, improves with time. By exercising your brain, it starts working a bit better. Things I may never overcome, however is language skill problems. I lose words, can’t make my mouth say words, say exactly the opposite of what I mean and am sure I said exactly what I was thinking. I say no, when I thought I said yes. I say a hamburger, when I mean horse, and am sure I said horse. This drives my husband up the wall, as you can imagine. I can’t recall the word I just said. Or I just simply can’t find any words at all to make a simple sentence. This has happened many times just today.

I forget what I was talking about the minute I said it. I black out in the middle of a conversation with my husband and have no idea what we were discussing.

For at least 3 years, I had very few emotions. I felt no love, little happiness, very rare joy. The only emotion I seemed truly capable of was anger. I had a lot of anger. Things have improved by far, but I still feel like I am just getting the residual effects of emotions.

I am writing this at 3 in the morning. I have sleeping problems. I have nightmares. The second I fall asleep, I start dreaming and wake up often, to only go back to sleep and dream some more. I rarely get any real sleep without medication and I stopped taking medication some years ago. I became aware of my addictive nature to medication at a young age, so declined pain medication a couple weeks after I started physical therapy. I still felt the pain, I just didn’t care that I felt it. It didn’t seem worth the possibility of getting hooked on expensive drugs for. That knowledge didn’t stop my decline into the abyss of alcoholism however.

I am now a 4 year sober member of AA. It took till I was 26, two DUI’s and a toxic reaction to a seabreeze for me to get the picture, that it was definitely time for me to quit drinking. I wasn’t a maintenance drinker, but when I did go out drinking, I went out drinking. I was 105 lbs at my heaviest and 5ft tall. I would sit down and drink 10 double 7/7’s on a regular basis. It is amazing I would wake up in the morning at all.

More ARDS leftovers was my impulsive behavior. I no longer had a fear of death and did very stupid things. Which included a 3 month trip to Europe to get away from my family and their nagging. I decided to go and 2 weeks later was there. The only reason I didn’t take off the very second I thought it up, was I had to get a passport first and some luggage. I did make some last minute plans for 2 weeks of the trip with a travel agent, but just tooks some travel books with me and winged the rest of it.

I treated men like disposable lighters for a long time. Most of them were cheap and were only there to light a little fire. Some were the 25 cent brand and only were good for one light. It was all just a game to me. On the outside I seemed well adjusted to all that I went through. I was really a horrible mess. Suffering Post traumatic distress in minor levels. Very little sleep through the nightmares, regretting my pathetic romantic relationships.

I slowly got better. Little by little. The best thing I ever did was to quit drinking. Through AA I actually got much of the therapy I needed. I was able to apply much of what I learned from others there to my life and make it better. I learned to shut up and to listen to others. I am not perfect and I still do very stupid things. I at least learn to see it for what it is and try to stop those behaviors when I spot them.

5 years ago I started getting sick again. It was a slow decline. I developed fibrosis of the lungs of unknown origin. It might be caused by the ARDS damage, might not, or may just be amplified by the damage. For the past 3 years I have been on oxygen 100% of the time. Usually from 4-6 liters. At times, I have to use 2 concentrators at home to generate enough oxygen to function on. I use portable tanks to go out of the home with, which I carry around in a backpack designed for bicyclers. I do allright. In the last 2 years, I got married, celebrating my second anniversary, on May 22, 2001. I gave birth to a son March 2000. He was born healthy and full of life, with the help of the UW Medical team backing me up.

The doctors want me to get a transplant. I am resisting it right now. Many people do not understand my reasoning, some even think I am selfish for not getting it. Here are my reasons.

To get a transplant, you must be on steroids to avoid rejection. The available steroids they have right now, I react very poorly to. After my son was born, they put me on a milder form of steroid at the level I would be taking for sometime with the transplant. I gained 30lbs, making it difficult to breathe, to climb stairs, which I have to do to leave my home. I grew a mustache and a beard. My stomach stuck out like I was pregnant again and I had to wear even larger pants than my weight defined, due to my weird shape. I had a hump on my back and my face swelled up. These all I could have lived with, but the drugs made me depressed, very very depressed. I looked in the mirror and couldn’t find myself and cried and cried, daily. They made me want to commit suicide. I sat regularly in the bathroom, late at night with my oxygen off and a bottle of pills in my hand fighting with myself over the impulse of wanting to die.

I yelled at my husband all the time and everything he did angered me. My son, the love of my life, was driving me insane. After a week of not sleeping more than a couple hours a night, getting up with my son every hour, and rocking him and singing to him, he fought me on the changing table with a dirty diaper making a mess everywhere and I spanked him. My husband says hard. I barely recall smacking his bottom at all. It was then, that I told my doctor no more. This has to stop. I had become violent, and I couldn’t recall the things I was doing. I feared for my son.

These are the mild steroids. Prednisone, more commonly used, makes me insane in 2 days, makes all my joints swell and I cannot function within a week. The steroid I was taking just took longer for me to get to that point.

I lived for about 8 months like this. I can’t imagine living like that again. I don’t want to live like that again. I don’t want my son to know me as that person. I don’t want my husband to get to the point, he is waiting for me to die, because he is miserable in the relationship. I don’t want to wish I were dead every day of my life. That isn’t a life.

Things are being created so quickly in medicine, if I hold out a while longer, they might find something better I can live with, or find something to keep me from needing a transplant at all.

I have been relatively stable for the past 3 years. I have gotten sick and been hospitalized, but I bounce back. I have been close to death at these times, but I do not fear death of this type. I am not in pain now. That is not the usual ending with a lung transplants.

I am still on steroids, but a very small amount. The really bad side effects have mostly gone away. I no longer wish I were dead and I do not fight with my husband. My son and I laugh all the time, and he can push all the buttons he wants to, and I never feel the instinct to lash out. I might swear a bit when he drops a heavy toy on my foot for the millionth time, but I do not get angry. I haven’t lost all the weight, but I don’t look in the mirror and cry about it. I am happy.

To me this is a matter of quality of life. I may not live as long, but then if I had a transplant when they first wanted me to, I probably would not be alive now, because all they had then was prednisone.

I want to see my son grow up with all my heart, but I want him and his father to remember me with love.