The Fire Part 3: Most Things Medical continued...

Ok, here is the rest of the medical stuff. It's not nearly as gory as the last post.

So my hands were sewn into my hips and the next three and a half weeks were the longest of my life. Keep in mind that I was in a back brace. I couldn't move my head, back, arms, legs and certainly not my hands. The only part of my body that I could move was my feet. At this point they had moved me off of the burn unit and onto the plastic/reconstructive surgery floor which was located just outside of the burn unit. I became really good at operating the TV remote with my toes. I also used my toes for the nurse call button. The burn unit only had eight beds and being an intensive care unit the patient to nurse ratio was much lower than on the regular floor so a nurse was always nearby. Not that the nurses on the floor didn't take excellent care of me.

My Mother sat by my bedside almost every day that I was in the hospital. The only exceptions were when she took two weekends off to go home and take care of business. During those times other relatives took over the bedside vigil. While my hands were in my hips my poor Mom got a lot of; "Mom there's a hair on my face.", or "Mom my nose itches." At least when my hands were free I could use the end of my hand splint to scratch my nose and take care of any stray hairs that bothered me.

Dr. M was still taking very good care of me and had completely won over my family not only because he had saved my hands but by declaring that he would stick with me and be my doctor no matter how long it took to get me functioning again or whether I could pay him or not. I had absolutely no medical insurance at the time. He won me over, despite my being a bit pissed that he'd sewn my hands into my hips, with his bizarre sense of humor and the promise that he would repair the flap site on my hips. He said that the way he'd have to repair the flap site would essentially give me a tummy tuck (it gave me a butt lift as well) and that even though Medicare/ Medicaid (which started paying for my bills about six months after my arrival) wouldn't pay for it, he'd give me liposuction to even out all of the bumps.

The nurses on the floor loved me (they did on the burn unit too). Even if my Mom wasn't a nurse I'm smart enough to know that although the doctors are in charge of your care it is the nurses who really take care of you. They all claimed that I was a good patient and were amazed that given the condition I was in that I hardly complained at all. When Valentines Day rolled around they even gave me a card and a present. My Mom said that I whined and bitched to her a lot, but I guess it's just easier to bitch and whine to family. I did apologize to her when she told me this.

Both the other girl who had been injured in the fire and I were kind of celebrities in the hospital. Two twenty-five year olds getting so badly hurt a few days before Christmas and who were making remarkable recoveries didn't go unnoticed around there. The nurses told me that our doctors bragged about us all of the time.

The day finally came when they removed my hands from my hips. It was another lengthy operation (ten hours). When my hands were removed the tops of them were just one big pad of fat and tissue. You could see the separation of my fingers on the palm side of my hands but not on top. I was in the home stretch of my initial hospital stay. I would have had to stay much longer if my Mom wasn't a nurse.

There were three things that had to happen in order for me to go home. The first was that the flap had to take, which it did. The second was getting my arms moving again. That was not an easy task. After remaining motionless for so long it took several sessions with the therapist before I was strong enough to lift my arms and hold them up. The sessions made my arms and shoulders ache something fierce. The last thing that had to happen was they had to get me up and walking again. Since I had been lying down for so long I had lost my equilibrium. The part of my inner ear responsible for balance was completely out of whack.

To reset my sense of balance they came in every day but Sunday for about two weeks and put me on what is called a tilt table. I swear to you that this device is something that came straight out of the Spanish Inquisition. Each time they put me on the table they tilted me closer to an upright position and left me there for a few minutes. It made me extremely dizzy. The closer I got to an upright position the more it felt like I was pitching forward and was going to fall flat on my face. I was strapped in so there was no real danger of this happening.

I finally got up and walking again. I had to call for help whenever I wanted to get up because I was still a bit unsteady. Also, if I had to go to the bathroom I had to have someone there to wipe my ass. Not exactly an ideal situation but it was better than using a catheter and a bedpan.

After being in the hospital two months I finally got to go home. Well, I got to go home with my Mom since my home was destroyed. I got absolutely no sleep the night before my release from the hospital. Since it was on the way to my Mom's house we stopped at the city where I lived and went to the restaurant that I was working at before the fire. Most of my friends and co-workers were there to see me, my landlord and his wife were there, some of my neighbors were there as well, and I got to meet some of the firefighters I hadn't met yet (a few of them came to visit me in the hospital) and the cops and paramedics who responded to the call that night. It was nice to see everyone and I promised that I'd be moving back to town as soon as I could.

I went through a lot of physical and occupational therapy when I lived with my mother and when I returned back to my town. A physical therapist is someone who mainly works with the strengthening and the flexibility of the lower body. An occupational therapist is someone who works on strengthening, flexibility, and dexterity of your hands. I basically had to relearn how to do everything with my hands. When I say everything I mean it. I'm talking brushing my hair, tying my shoes, and learning how to write again. Everything!

It was three months before I could feed myself. My first meal was pizza. I balanced a slice of pizza on the back of my hand and it was heaven even though I got sauce all over my bandages. And I thought I loved pizza before! It took me four months to be able to walk by myself unassisted. My Mom had to put a baby monitor in my room in case I needed to get up in the middle of the night. It took me five months to be able to stand up and get myself off the sofa. I was surprised to learn that you use more muscles and it takes more strength to stand up than it does to walk. After nine months I was able to take care of myself enough (with lots of help and people checking up on me) to move back to my city. I was unable to drive for almost two years.

The next time I returned to the hospital for surgery that March it was to have my fingers separated, another lengthy operation. I remember waking up in the recovery room and hearing someone moaning loudly. I thought, "Who is the idiot that's making all of that noise and why don't they shut up?" It turns out that I was the idiot making all the noise. The finger separation was one painful surgery. Not that it hurt as badly as the burns did though. There had also been a complication. I had lost a lot of blood. I kind of surprised them. They didn't expect a lot of blood loss because although I had tissue and skin on the back of my hands my blood flow was compromised. I get enough blood to the back of my hands to keep them healthy but a lot less than the average person does. My hands get cold very easily, especially the backs.

So I got to spend the night or two in the intrinsic care unit, which is pretty much a step down from intensive care. A hematologist came in and said that I was borderline for needing a transfusion and since I was young and otherwise healthy it had been decided that I wasn't going to get one. They were going to let my body replace the blood loss. "Besides," he said, "even though the blood goes through a lot of screenings, you never can tell what's in there." A comforting thought. I think he might have said that so I wouldn't feel bad about not receiving any blood but still... It took me about two months before I regained my strength. I was very tired and weak.

I can honestly say that I was never scared to go into surgery before the finger separation. The next time I had a surgery I was petrified. After it and the next surgery went well I got over it. I'll be honest and say that I did cry a little (and I mean just a little, no sobbing) each time I had to go back for another surgery. Not because I was afraid or felt sorry for myself but because I knew what I was in for and the thought of doing it again was a bit wearying.

The next series of surgeries I had were to rebuild my web spaces. If you don't have a web space between your fingers they will grow back together. Dr. M did every other web space (so the blood flow to my fingers wouldn't be compromised) one hand at a time, so it took four procedures before all of the spaces were created. While he was doing this he also took some of the fat out of my fingers. Remember, they took plenty of tissue along with the skin so that they would have enough to work with when they rebuilt my hands.

After the finger separation they operated on my hands one at a time so I could take care of myself. I am ambidextrous in everything but writing. I could even do my own dressing changes and take my stitches out.

The other surgeries on my hands had to do with scar and tissue reduction and trying to get my joints moving again. The scars were reduced and on some of them they did a procedure called a z-plasty. Basically Dr. M turned some of the scars on my hands into a zig zag shaped scar because straight scars can pull on the fingers and inhibit function. The tissue reduction was done to reduce the fat tissue in my hands and make them look a little more normal. The surgery to release my joints and get them moving again was unsuccessful. The operations on my joints were my choice and added four surgeries and about one year to my recovery. Dr. M said there was a fifty-fifty chance of getting movement in my joints again but we found out that they were just far too damaged. I had to try though. At the time I knew I'd rather know than wonder about it for the rest of my life.

Another operation I had was to have a permanent epidural implanted in me so I could tolerate the pain of therapy. They call it permanent but you really only use it for six months. They implanted a port in my chest and ran a tube under my skin over my shoulder to the back of my neck where it was inserted into my spine. A needle was inserted in the port and the medicine was delivered by a pump which along with the medicine was located in a fanny pack. I wore this pack 24/7. I named him Ralph. I had to have it removed a little early because the port site was starting to get inflamed. Silly me, I thought that since the medicine was delivered to my spine and not directly to my blood stream that I wouldn't have any drug withdrawal. I had experienced some mild withdrawal symptoms when they took me off the morphine in the hospital. It felt like I had a bad case of the flu. The withdrawal from the epidural was much worse. For two weeks I slept and ate very little. I also experienced extreme anxiety. This happened at a particularly bad time for me.

My hips needed to be repaired, basically there were just scared craters where my hips used to be. So Dr. M put eight tissue expanders in my hips. Four tissue expanders were placed around each crater, one on the top, bottom, and each side. A tissue expander is a saline bag. Every couple of weeks I took the two and a half hour trip to his clinic where they injected more saline into each bag and this stretched my skin. It was very uncomfortable. I had to have four body pillows propping me up in order to be comfortable enough to get some sleep. Dr. M had great fun with me during this time. There were lots of jokes about not going to the beach so I wouldn’t get harpooned by mistake. He loved it when I suggested that we send a picture of my torso to the Weekly World News with the caption "Woman Pregnant With Alien Babies". When the expanders were removed the skin was loose enough for it to be stretched and sewn up along my sides so I'd have hips again.

The expanders had to come out about a week early because I developed an infection. I had caught an antibiotic resistant bacteria. I was very lucky because it was caught early. If it had not been I would have been in serious trouble. I was put on a new generation of antibiotic in hopes that it would be able to stop the infection. It did. Dr. M also thoroughly irrigated the wound site where the infection was, knowing him he did it with a pressure washer. I woke up from that operation with Dr. M sitting at my bedside (which happened only three times in over thirty surgeries) waiting to inform me that the culture came back with that serious infection. Poor guy, he was so worried. It's not like it was his (or anyone's) fault. This bacteria lives on the skin and has evolved in response to all of the antibacterial products we use.

I had to wear six drains for the next two weeks, not because of the infection but because of all of the fluid that resulted from bruising due to the procedure. I had to empty them twice every day and record how much fluid had accumulated. It was kind of funny, a friend of mine who is not squeamish in the least took me to see Dr. M when I got the drains removed. When he pulled one of them out and she saw the long tube moving under my skin she literally climbed up into her chair. I think if she could have she would have climbed the wall. The liposuction was done almost a year later. Now that's a painful procedure. You are nothing but one big bruise for six weeks. You also have to were a girdle at all times (except while showering) for six weeks.

So I got a flat stomach and a perky ass out of all of this. Every time I got near a mirror for a while I started singing that my butt looked good in Levis until a friend told me that if I didn't shut up she was going to hit me. What can I say, up until that point I had always had a flat ass. I still sung the song for a while, just not when she was around. I've got scars on my body. There is some scarring where the original skin grafts were taken from my thighs. I also have scars running up my sides from where my hips meet my legs to about three inches below my bra strap. I can't wear a bikini but I look great in a one piece. I have a scar on the front of my right shoulder where the epidural port was and one on the top of my shoulder and the back of my neck from the epidural as well.

My hands are nowhere near normal although people usually don't notice them until they see me use them. I can do everything you can do with yours but I have to do a lot of it in a different way than I did before. The only place that my fingers bend are in the large knuckles on both hands and that is limited to only a few fingers. My hands are stuck in a strange position. If you put you elbow on the table, held your arm straight up and bent your fingers from your big knuckles until they were horizontal that is the position that my hands are stuck in. This is to facilitate my ability to grip objects. I can not flatten my hands and I can not make fists with them either as my fingers won't bend.

For about a year the muscles in my hands literally went into spasms trying to get my hands to make a fist, it broke my heart a little every time that happened. I can only raise the ring fingers on both of my hands up from the big knuckle because all of the tendons but those were burnt to the point that they couldn't be repaired. Dr. M said that we could try and graft some tendons from my feet and see if that worked but given the damage to the backs of my hands the chances were slight that it would. I opted out of that surgery; graft is a four letter word to me. I have no fingernails on either thumb and only half a nail on the ring finger of my left hand. I also lost the tip of my left pinky. That was one of the other times I found Dr. M by my bedside when I woke up from a surgery. He wanted to tell me personally. I think I cried about it once and then got over it.

I have nerve damage on the back of my hands. I have limited sensation in most parts and no sensation at all in some. I have to be careful because I can damage the back of my hands and not even know it. In fact I burned a small part of my left hand on the oven last week. I have never damaged them seriously though. I try my best to be careful. I have scars on my hands and my wrists are badly scarred. I also have a skin graft scar running up the left side of my forearm. I told you about burning that area in part one. The only thing I can't do that I was able to do before is shuffle a deck of cards. My handwriting (at least when I write to other people) has actually improved since I have to write slowly I might as well be neat about it. A testament to my poor typing skills, I type about the same wpm as I did before the fire maybe more since I've used the keyboard on my computer a lot over the past few years. I only use three fingers and a thumb to type with though. I have full thumb opposition which means that I can touch my thumbs to the tips of each finger. My wrists move freely with no trouble at all.

My neck acts up from time to time. Mostly when the weather is bad but it can also happen when I sleep on it wrong and sometimes it just happens when I turn my head. Since the vertebrae I broke healed out of alignment I have more trouble with my back than my neck. I have to be careful about what I lift and I have to rest a lot when I do all kinds of activities so it won't start to spasm. I have a running script for muscle relaxants but I don't take them much. I hate any kind of narcotic pill used for pain. I've taken too many of them and I don't like the side effects. I have to be crying from pain before I'll take one. I usually take Tylenol and a lot of the time it takes care of the pain or at least most of it.

I have trauma induced osteo arthritis in my hands, knees, back, and feet. I have very mild arthritis in my wrists, shoulders, and elbows. What can I say, when you let your body drop three stories onto concrete it isn't very forgiving. The weather is usually what causes my arthritis to act up. Cold, windy, and damp weather is what triggers my arthritis the most. It's worst in the winter. I can always tell when it is going to rain, a frontal system is coming in, or it is going to snow. Snow is the absolute worst. I can tell how many inches are going to fall by how hard it is for me to walk. Fortunately it does not snow all winter here. I don't think I could ever stand to live any farther north than I do now. I can't take prescription arthritis medicines because they mess with my stomach along with aspirin and the like. I take Tylenol and if it gets bad enough to make me cry I have pain pills. Luckily for me it does not get that bad very often.

I've had over thirty surgeries in five and a half years. I asked the hospital accounting office to tell me how much my total hospital bill was and it was just over a million dollars. This doesn't even include the money spent on travel, medication, clinic visits, or all of the physical and occupational therapy I’ve had. Medicare and Medicaid paid for almost all of it except the travel expenses. I am your tax dollars at work.

I still keep in touch with Dr. M through e-mail. I told him that no good deed goes unpunished and if my hands ever needed work again he was going to be the one do it. It's worth the drive even with today’s gas prices; he knows my hands inside and out. I did have to go see him again a couple of years ago. I had a problem with swelling in one of my fingers. He couldn't tell for sure what was wrong but he ventured a guess that it was a combination of micro fractures (which don't show up on x-rays) and the fact that my joint was calcifying shut. This had happened to most of my other joints already. Burns cause joints to over calcify for some reason (no one knows why). Add that to the fact that my fingers don't bend and you get solid bone where the joint spaces used to be.

I need to say that I had a lot of help during those years. I had friends, family, some of the firefighters, the arson investigators, and my landlord (I rent from the same one who owned the building that burned down); all drove me to my appointments and helped me with whatever I needed. I was very lucky to have that kind of support.

The next blogs will deal with the person who set the fire and his trials, the speeches I used to give, where I’m at now in my life, and mental health issues.