Hospitalized from 02/22/2004 – 04/03/2004
Cost of treatment: Approximately $300,000
Surviving NF & keeping my arm: Priceless
I felt a slight pain in my arm late one evening, shrugged it off and went to bed. In the morning, I woke up in agony: extremely painful right arm and armpit, fever, physical exhaustion and other flu-like symptoms. I also had a huge “spiderbite” (which I now believe was an MRSA wound) near my tailbone and figured it was causing my fever. I finally became so uncomfortable that I was unable to sleep in my flat bed and asked my father if I could sleep in his room, where he had an adjustable bed. Three or four days passed, from the time I first woke up ill, until I finally sensed I was in dire straits and allowed my business partner to take me to a hospital. I think all that kept me alive was sheer willpower and a few cans of protein-rich dietary supplement I was able to consume.
Being broke and not having medical insurance at a time like this was not good! We first went to a hospital with a sign in their lobby that states that they have to treat you whether you can pay or not, and I wanted to go there because they are supposed to be one of the better hospitals in my area. All they did was give me a shot and a few IVs, took x-rays and fed me. When they realized how sick I really was, they decided to patient dump me to a county (teaching) facility. Basically, all they did was delay my getting proper treatment by an additional eight hours!
The ambulance ride to the county hospital was a nightmare. I got really carsick and the ride seemed to take forever. When I got there, I was placed in the extremely cramped and overcrowded emergency room where my condition suddenly began to deteriorate. I started to get dizzy and I began vomiting into a trashcan. Huge blisters began to form and pop on my arm. A parade of doctors began to examine me, each of them asking the same battery of questions: DO YOU USE INTRAVENOUS DRUGS? DID YOU (OR A BOYFRIEND) BURN YOUR ARM? Over and over again, they would ask me these questions and over and over again I would explain that I HATE NEEDLES and would no sooner stick one in my armpit than in my eye! I couldn’t believe that they really thought I would allow someone to abuse me so horribly. I was beginning to get so insulted that I seriously considered walking out! THANK GOD I DIDN’T DO IT! If I had, I would have died for sure.
The early diagnosis was Cellulitis and I also was suffering from Acidosis. But what I really had, and they were desperately trying to rule out, was Necrotizing Fasciitis (aka Flesh Eating Bacteria). I had absolutely no clue that I was about to lose my entire right armpit, a small portion of my right breast, most of my right upper arm and a smaller portion of my right inner forearm: skin, fascia, fat, lymph glands, and some tricep and shoulder muscle. NF is an extremely life-threatening illness and often requires extensive treatment. It can sometimes necessitate amputation or, as in my case, result in severe disfigurement and a multitude of other problems.
The doctors sent me for x-rays and said they showed nothing, so they wanted an MRI done. The pain in my arm was unbearable. My arm was contracted in such a fashion that the techs could not get me into the MRI machine! The contracture is still present to this day, mainly because an intersection of several scars is keeping it from straightening out completely. After the MRI failure, the hospital still did not have a bed for me, so I spent the next period of time (I was pretty out of it by now and not sure of timeframes) in “observation,” or what the doctors called “the emergency overflow area.” At some point they finally found a room for me. I think I slept a while. All I remember is the woman who shared the room with me and how a light was glowing under her bed.
While I was in that room, they suddenly decided to give me Vicodin for pain instead of the morphine I had been on. I’M ALLERGIC TO VICODIN. The Vicodin instantly made me swell up. Fluids were already leaking in my body, both a reaction to the infection (toxins and enzymes) and as a result of increasing organ failure. Later, a nurse gave me a tray of food, then a few minutes later, she came back, grabbed the tray and said I wasn’t allowed to have food! This happened just prior to my first surgery. I don’t think the staff communicated with one another very well at times!
At some point friends arrived to visit. Of course, as soon as they left to go get a bite to eat in the cafeteria, a doctor came and got me and said I was going in for an ultrasound. I guess they realized that an ultrasound would just waste even more time, because they wheeled me into the operating room instead! I remember getting on a strange stainless steel table. After listening to my heart, the doctor asked the students if they could also hear my heart murmur! I was really frightened and remember him rating the severity as a 2.5 out of 5 or something like that (I’m really not sure). After that, I remember having a mask placed over my face and counting backwards: 10, 9, 8, 7 … then everything goes black for a while. Upon reading my files weeks later, I found out I had 4 separate heart problems at that point: two murmurs, including the mitral valve; a usual thickening (in a leaf?) and my heart was moderately enlarged.
FIVE DAYS PASSED BEFORE I FINALLY AWOKE IN THE ICU …
I vaguely remember the ICU and feeling trapped! I had a nasogastric tube, an endotracheal tube, a triple port (central line catheter) in my neck, six IVs, blood pressure cuff/monitor, a blood/oxygen gauge (that little thingy with the red light inside it) on one finger, heart electrodes/monitor, legwraps that pump air in and out (to prevent blood clots), a Foley (urinary) catheter and a semi-permanent thermometer of some sort up my bottom. I felt like I was choking and later found out the respirator tube had been positioned too low (right on the carina). I had considerable pulmonary edema, I guess due to my heart problems. I was in a really uncomfortable position on my back with my debrided right arm suspended up high (tied to an IV stand) and my left arm strapped to the bed: they didn’t want me to be able to pull out any tubes. I could see my sister-in-law and then realized how ill I was — I hadn’t seen her in 22 years! I can sort of remember my business partner talking to me, but she couldn’t understand me. I got really frustrated trying to point to letters (on an alphabet board) to spell words. It’s all a blur now. I do remember seeing my sister-in-law and my father. Suddenly my father (who was 86 years old at the time and suffering from Congestive Heart Failure) began to faint, falling forward towards the footboard of the bed — luckily a nurse and my sister-in-law each caught him by an arm. They took him to the ER and then he was hospitalized at another hospital. Dad wound up being hospitalized several times with different infections during my hospitalization.
During my ICU stay, I had three debridement surgeries and spent three of the five days on life-support (thanks go out to my friends who sat at my bedside and held my hand whenever the staff would let them). I finally woke up and was well enough to have the tubes removed. This was a surprise for my doctors who had only given me a 4% chance of surviving the first night in ICU. Not only did I wake up, I was in great spirits — the tubes were out and my teeth were freshly brushed! I guess I was happy to be alive and even happier that they didn’t have to amputate my arm. I didn’t know the full extent of my condition at this point, however, because I couldn’t see how much of my arm was gone. The morphine made me feel like I was living in a cloudy dreamlike state and could possibly still wake up to find that my ordeal was just a really long and horrifying nightmare. After a couple more days, I realized that I definitely wasn’t dreaming. I also realized that someone had braided my hair when I was asleep and later found out it was one of the nurses that did it. Then I found out that, when they wheeled me into surgery for the first debridement, I was in the final stages of multiple organ failure!
After the ICU, I was finally transferred to the room where I would spend the next five weeks or so. I had to have twice daily dressing changes, which were very painful, especially during the week when they used Dakins Solution (water and bleach) on it. I also had to have several IVs, shots and medication for some problems with my heart and low blood pressure issues. I was malnourished and my body’s protein stores were drained. They even put me on steroids in an attempt to trick my body into making and storing protein instead of using it all up. After scheduling, and then postponing my skin graft surgery, the doctors decided to give me Total Parenteral Nutrition (TPN) infusions to raise my Albumin (protein) levels which remained extremely low nonetheless.
I also had to have four blood transfusions, for a total of five pints of blood at various times throughout my stay. And I had a fourth debridement surgery in March. As I mentioned earlier, they had totally removed my armpit and I also lost a lot of skin, fat, fascia and some muscle (from my shoulder and tricep). They also removed a reactive lymph node. Almost my entire right arm was skinless for over a month. During this time, if I wasn’t on oxygen or having a transfusion, I was allowed to wander about the hospital, sometimes with a battery-powered ambulatory infusion pump if I was on an IV med.
My partner and I called these times our “great adventures.” I was still very sick and fatigued, but being a girl who loves to shop, I would visit the hospital’s Gift and Thrift Shops! I often struggled to walk back to my room after longer stays in the cafeteria or a walk out the front door to get some air, but I wanted to walk … it really helped lessened the edema in my feet and legs. Unfortunately, if the hallways were really crowded I would get scared and nearly had a couple of panic attacks. I was experiencing a lot of anxiety, so they put me on Prozac. This turned out to be a big mistake — about half an hour after I would take it, I would get really sad and weepy … the Prozac actually GAVE me depression!
I began to refer to my arm as the “meatsicle.” All that was left was bone with some muscle on it. The looks on the nurses’ faces, when they would see my arm for the first time during a dressing change, was as if they were seeing a ghost! They turned pale. I finally had my six and a half hour long skin graft operation on March 26, 2004. Because the axilla (armpit) is one of the most difficult places to graft skin to, the doctor had wrapped my arm in three blankets. I couldn’t put my arm down! This contraption was on me for five days, while a suction device drew out fluids and sucked the skin tightly to my arm. The blankets did their job, but they were very cumbersome, especially in the bathroom! When I first woke up in recovery, I thought the blankets were a firehose, they were that big!
The doctor had harvested the skin for the graft from the top of my right thigh. My leg’s wound and its dressing (which had to be dried out for several days under a heatlamp) was very stiff and painful. Staples would pop out and rip my skin. My arm will be grossly disfigured for the rest of my life and I will have other life-long problems, such as Lymphedema (due to the “reactive” lymph node that was removed). The final days I was in the hospital were the worst of my stay, I could barely walk and still felt terribly weak and ill. But I had already overstayed my welcome as far as the state was concerned.
On March 31, 2004, the doctor removed the bandages, blankets, foam, tape, dressings, etc. from my arm and declared the skin graft’s “take” to be 100%. A stream of doctors visited to see the results and all of them gushed about what a great job it was and how I should be really happy with it. But, the bigwigs upstairs wanted me out. My plastic surgeon did his best to buy me a little more time, but it was out of his control. They finally tossed me out of the hospital on April 3, 2004.
I had my first follow-up appointment on April 6, 2004 at seven in the morning! I had to be pushed in a wheelchair as I still had the dry Xeroform dressing on my leg impeding my ability to walk. There were a few weepy areas and a staple tear in the skin graft. The doctor declared that the “take” was down to 97%, but there was no need to worry about it. The doctor also said that I didn’t have to use the Xeroform dressings on my arm anymore, which was such a relief! I was starting to feel poisoned by them and still had to get them off my leg! The problem was that Xeroform dressings are soaked in petrolatum. Apparently, I am highly sensitive, perhaps even completely allergic to the stuff. The petrolatum was starting to come out of every pore in my face and hair. I couldn’t stand the smell and it made eating very difficult, as well.
The donor site’s scab was “woven” into the fabric of the Xeroform and I worked hard to remove it with vitamin E oil. It took two days to get it all off. At this point, there’s only one small, nasty-looking scar near my knee. The rest of the scar is hard to see unless you really look hard at it and find the edges. Then you can see where each individual strip of skin was “planed” off. My arm will take a long time to heal, plus my right hand is very weak and painful. My elbow is still severely contracted: I cannot straighten my arm. But, I can finally feed myself with it again, which I couldn’t do for many months. I also drive short distances, handwrite a bit (not a long list, only a check or two) and (sort of) type again (I do use my left hand much more than my right, however). I still cannot pick up anything heavier than 2 pounds without great discomfort. The scars are stiff and tight, I’ve used every cream and moisturizer — nothing helps! The skin still retains the “netting” pattern (looks like a plucked goose). Repetitive motion causes my arm (especially my elbow) to swell quite quickly and the results of doing any small chore are quite painful.
I went to Occupational Therapy twice a week and Physical Therapy once a week (for five months and will return after my corrective surgeries). I also have to wear a custom vascular garment (a zippered vest with a full length sleeve on the affected side) eight hours a day. There’s been talk of “releasing” some of the scars and possibly some reconstructive surgery to help improve my mobility problems. I still have a long road ahead of me, it’ll be many more months, even years, before we will know how much damage will be left. The pain isn’t much fun, but I’ve been coping with it. Being alive is a gift to be treasured! God bless everyone whose lives have been, or will be, affected by NF. Thank you for letting me share my story with you.
