|Hospitalized from 02/22/2004 - 04/03/2004
Cost of treatment: Approximately $300,000
Surviving NF & keeping my arm: Priceless
My father became quite ill in August 2003. He had a bad infection and I was elected to perform medical procedures (for the first time in my life) to treat his condition. Twice a day, I administered "Push IV" antibiotics. Dad was 86 years old, his veins were weak and I quickly learned the signs that indicated it was time for a trip to the Infusion Clinic to have the IV reinserted. Although quite nervous at first, I soon mastered the procedure. And I would soon learn many more procedures ...
By November, Dad seemed much improved and went off to visit my brother in Northern California for two weeks, a bi-annual event for them. Dad returned to Southern California and by January, seemed quite ill once more. I convinced my brother to come visit. It was the first time he had been "home" in 22 years and he was pretty surprised to see how Dad had let the place go. My brother helped fix up Dad's bedroom with a new adjustable bed, bookcase and air-conditioner. We also installed a brand new washer and dryer in the garage after going for over a decade without. This was most helpful as Dad had lost control of his bladder (he had suffered prostate cancer a decade before), had a Foley catheter and would soon be given a suprapubic catheter, another medical device that would be my future responsibility to care for. (It was my "future" responsibility because Dad got the suprapubic one during my hospitalization.)
With the improvements finished, a larger household budget and a small salary of my own, I became Dad's "official" in-home health care provider, and by the start of February 2004, things were looking up. My brother returned to his home in No. Cal. In fact, not only was the household in better shape, I was in better shape, as well. I had quit smoking 13 months previously, had more energy and was enjoying what little free time I had by going out shopping. Between that, and taking Dad to his multitude of doctor and clinic appointments (some weeks we would make 5-7 trips), I was more active than I had been in years. I was happier, I was eating better and I was determined to be a loving, responsible and efficient health care provider for my father, while also maintaining my large number of websites and selling collectibles on eBay. Little did I know. In a few, short days everything would completely change forever, and my world would turn upside down. I would fight for my life and win. Dad would fight for his life and lose.
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 slept in Dad's room, in his adjustable bed, because he had problems getting used to it and still preferred sleeping in a reclining chair. Three or four days passed, from the time I first woke up ill, until I finally sensed I was in dire straits.
I found the strength to get out of bed, then announced to my business partner (who also happens to rent a room in my house) "I don't think I'm long for this world ..." and finally agreed she should take me to a hospital. I think all that kept me alive all those days was sheer willpower: I simply could NOT die before my elderly father, who already endured the very tragic deaths of his father (who was ran over my car before my Dad's eyes), his youngest son (the brother I never knew) who died at age 7 in a freak accident and his wife (my Mom, who died of cancer at the age of 48). The cans of "Ensure" I drank probably helped, too. I needed the protein and it was about all I could get down.
Being broke and not having Medical Insurance at a time like this was NOT GOOD! We first went to Sherman Oaks Hospital. There was 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 UCLA-Olive View Medical Center (Sylmar, CA) 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.
They sent me for x-rays and said they showed nothing, so they wanted an MRI done. My arm was KILLING ME and was already contracted in such a fashion that the techs could not get me into the MRI machine! The contracture is still present, mainly because an intersection of several scars is keeping it from straightening out completely.
Anyway, after the MRI failure, they 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 other 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 (she was being treated for something diabetes-related) and how a light was glowing under her bed.
I also remember two things that now strike me as odd. The first of which is, 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. The other thing I found odd was that a nurse gave me a breakfast tray, then a few minutes later, as I was trying to choke it down, came back, grabbed the tray and said I wasn't allowed to have food! I think 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 Nora arrived and then our friend, Dino Andrade, showed up to visit. He gave a me a Mickey Mouse keychain (that belonged to his late wife and South Park voice actress, Mary Kay Bergman) as a good luck charm. Of course, as soon as Nora and Dino 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 to 3 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 ......
ANYWAY, 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 Nora 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 Kaiser Permanente. Dad wound up being hospitalized several times with different infections during my hospitalization.
There was also another scare with my dad during my hospitalization. My brother and sister-in-law brought him up to visit me one evening and on the way back to their car, he tripped in the parking lot and fell on his chin. Not only did he have to have his chin stitched, his dentures broke completely into individual teeth (it amazes me that they found every tooth after they scattered all over the parking lot) and his mandible was forced up into his mastoid causing pain in both his jaw and ear. His hands, arms and legs were also banged up. When I first saw him after his fall, I nearly fainted. He ended up being hospitalized afterwards with yet another infection (the type that people actually catch in the hospital) and when he returned to visit me, he had been shaved clean by a nurse. It was the first time in 30+ years (since I was a kid) that I've seen him without his beard!
Anyway, during my ICU stay, I had three debridement surgeries and spent three of the five days on life-support (thanks go out to Nora and Dino 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 dream-like 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 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 none-the-less.
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.
Nora 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'd go pale.
I had my 6 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 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.
Because we were in the middle of cleaning and reorganizing my house when I was hospitalized, I decided to go to a motel instead of home. I ended up staying there with Nora for three weeks before returning to my house, which I saw as the "scene of the crime." I was afraid that whatever gave me the NF-causing bacteria was still lurking about, waiting to reinfect me.
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 can not 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, until there was nothing more they could do, 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) 8 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 before we will know how much damage will be left. The pain isn't much fun, but I've been coping with it.
I decided I wanted to post photos of how my arm looked in March 2004 and how it looked later (sort of like "progress reports"), because words can't accurately describe my condition. It's really something you have to see with your own eyes to fully grasp. So, check out my photos, if you have the stomach for them. A few of them are pretty gross, so viewer discretion is advised!
I'd like to thank Nora Salisbury for getting me to the hospital and for being there every single day, cleaning me, washing my hair, basically doing everything for me, including holding my hand in ICU. Without this woman, I would have died. I owe her my life and there's no way I can really ever repay this debt, other than to say THANKS FOR BEING SUCH A PEST! LOL!
A million thanks go to Dino Andrade for his support and for holding my hand in ICU. I love you my "adopted little brother." Special thanks go to my family, especially my sister-in-law, Liz, my brother, Alan and my father, Herman. And to all my friends, especially Gail Reese and Hope Nielsen. I also want to thank the Olive View Medical Center staff, all my doctors, nurses and therapists, especially Rico, Mary, Paul, Mary Kay, Trudy, Victoria and the dozens of others who helped me. A big shout out goes to my plastic surgeon, Dr. Derek Shadid, for all his hard work. You're amazing! Thank you for taking the photos in the operating room & hospital and emailing them to me!
God bless everyone whose lives have been, or will be, affected by NF. Thank you for letting me share my story with you.
First Draft: July 2004. Revised: January 6, 2008.
Read on ... my NF Story continues in Updates and Issues.
Help keep this website online. Donate via PayPal or Amazon Honor System.