DOREEN'S OLIVE VIEW HOSPITAL EXPERIENCE
FROM HER CAREGIVER'S POINT OF VIEW
I'm Doreen's best friend of 18 years and housemate for over 15, and I took it upon myself to become her nearly constant caregiver during her battle for life against a nasty microscopic foe. I want to relate Doreen's experience from my perspective because there are things that, had I known before this happened, it might not have progressed to the stage it did. I don't want anyone else to have to be at the mercy of doctors who don't know much more than the patient does about this particular horror of the flesh-ride we call life. If you love someone and you even suspect they may have this disease, step forward and speak for their rights as a patient, because they aren't going to be in any shape to deal with it, their big challenge right then is living ... period.
We have been raised to believe that authority figures must be good or they wouldn't be in that position. Horse hockey. I met more incompetent, ignorant, mean and rude people among the doctors and nurses at Olive View-UCLA Medical Center than I met in my entire school career, and I was the class punching bag. Don't be afraid to let them know when you know something important, and if they won't listen at all and won't do even the most basic thing to get to the truth as quickly as possible, start calling other hospitals within your means, a patient has a right at any time to walk out of a hospital and seek care elsewhere (though with this disease, time is precious, you need treatment ASAP, but if a hospital isn't going to properly treat the patient, it's nice if you're in a large-enough area to seek a 2nd/3rd/etc opinion). If they see you're serious they may listen rather than lose the business (keep in mind that's just what this is to them -- a business transaction ... don't expect Hawkeye Pierce to ride in on a tank and save your loved one, no one is a doctor solely because they care) and if you can't find one that will listen, start calling the media. They love this stuff, and the hospital doesn't want them involved. Don't listen to them about cameras, either ... sneak it in any way you can and snap pics whenever possible. Looking back, I could have redone her bandages in the middle of the night and gotten good pics, but I was in such shock that I was being a goody-two-shoes to prevent being thrown out.
First, I wish we would have gone to a doctor earlier ... although from our research since this happened, many people's accounts reveal that they went early, only to be told to go home and rest, allowing it to progress to life-threatening status before they venture back to the ER The trick is measuring the level of pain against the observable degree of injury. Doreen had no open wounds, some swelling and a bit of redness, but when she stated she thought she had slept on her arm funny and her shoulder really hurt, I thought if I helped her move and stretch the arm it would have a pressure-relieving crack and feel better. She shrieked in pain and wept. Had she gotten proper treatment right then, she probably wouldn't have lost any muscle, and maybe not her armpit.
The next trick is making a doctor understand what's going on, and persuading them to do certain things ... sadly, most doctors nip these attempts in the bud with a dismissal of the patient's/family's advice like "who's the doctor here?" It's also important to squelch the overwhelming desire you will have at moments like that to choke the life out of them. You can try explaining that you read about this (most doctors hear that and immediately think "tabloid") and if you use the actual term Necrotizing Fasciitis, and site the ratio of pain to injury, you may get their attention. The acronym MRSA is quite the buzzword nowadays, and the test for that only takes an hour or so, and might convince them they're dealing with NF. Now you must make sure they get the detection phase right. The problem is they don't consider you a colleague, so they aren't going to share everything with you, just what is necessary to cork your question hole.
They didn't tell me what was going on fully; I was worried but didn't have a clue how serious it was until they said they wanted to "rule out the more life-threatening infection" ... then my brain cells began to short out (and didn't quit for 42 days) and I felt the first creeping of panic. They said this as they were taking a sample from the blisters that had formed, grown and popped in a matter of minutes, right before our eyes, there in the ER treatment area. This should have been their first big clue, but it goes to show how things work at a hospital. Do not assume that because one person in the staff has seen/understood/diagnosed the condition, they will be writing it in a chart/sharing the info, etc. When you think you see a glimmer of understanding in their eyes, pursue it. Ask for full clarification, write down terms for treatment/drugs to use and who to attribute the opinion to ... at least if you can say "Dr. so-and-so said ... " that's someone you can ask to be paged to come to you and reinforce their opinion with whoever won't listen. You see, they all operate on the unwavering belief, much like an interrogator, that the patient and all their friends/family are lying. So when we repeatedly told any doctor/nurse around that the huge blisters leaking foul-smelling liquid EVERYWHERE (wheelchair, X-ray machine, gurney ... no wonder this stuff is spreading like wildfire ... I'll address the caregiver's role in hygiene later) had only formed 5 minutes ago and swelled like they were attached to a balloon pump, they all absorbed it with a "yes, that's nice" attitude, not even making eye contact ... then conferring 10 feet away, not caring that we can clearly hear them discussing whether she got this cramming needle drugs in her armpit or an abusive boyfriend burning her, no matter how many times we told people she didn't have a boyfriend and didn't use drugs and would sooner stick needles in her eyes than in her armpits ... it's one thing when you have to tell each new person who comes along, but when the same doctor asks you this 3 times, you start to wonder when the spotlight blinds you. Get the name of any witnesses to a dramatic change in the condition whenever possible.
The blisters were the result of gas escaping the tissue, which is now so destroyed by the toxins produced by the bacteria that it's liquefying. This is important for two reasons: 1) If you see this happen and you aren't at a hospital yet, GET TO ONE. 2) If this happens and you ARE at a hospital but they haven't taken X-rays yet, remind a doctor who orders X-rays in order to "rule out a more life-threatening infection," that the blisters show the gas has already escaped from the tissues. Apparently, the lack of visible gas trapped in the tissues was what convinced doctors that Doreen didn't have NF ... I didn't know that's what they were looking for until after the fact. The only other test was the one conducted on the liquid swabbed from one of the blisters, which had I known would take 3 DAYS to get results back from I would have been more inquisitive about options to find out sooner, which may have led to a discussion about the gas, thought without a piece of crucial knowledge that may not have even helped. This disease frequently kills in 2 days; sadly, that contributed to their belief that it couldn't be NF "she'd be dead already" ... it's called an ANOMALY, doc, look it up. Not everything falls within normal parameters.
In the aftermath, we read many others' survivor stories, and were stunned by what we learned from one ... all they needed to do to confirm/deny their suspicions ON THE SPOT was a simple incision or needle biopsy to the affected area. Either make a small cut down into the tissue to examine visually, or stick a needle in and draw some tissue out to look at. The condition of the deeper tissues would have told them she needed to go into surgery immediately, as happened to the survivor we were reading about. You would think that 8 YEARS of medical school would have been enough for someone to know that a simple visual examination can be done so easily right then, rather than waste 2 days while a person is dying, waiting for a lab test. I was furious ... this particular hospital is what they call a "teaching hospital," it's part of the UCLA system, and interns in the medical curriculum do residencies there, and learn from the more seasoned doctors. This makes them think that they are on the cutting edge of medical science and technology (really, they told us this); but they couldn't figure out that bubbling flesh isn't just happy to see them and maybe we should take a look with a 1/2 inch cut in the skin. When I think about it, I'm not sure if the fact that the windows there are all sealed shut is to keep people from committing suicide, or to keep people from throwing staff members out the window.
Once you've gotten them to begin treating the correct ailment, you have to shift your attention to nurses/orderlies who will be the patient's basic caregivers for the duration of their stay. If you get good ones, thank your lucky stars. Despite their choice of profession, not all nurses are nurturing; some are rude and condescending, ignorant, and downright detrimental to your loved one's health. You have to keep a watch over what they're doing and learn as much as you can from the decent ones. She had different nurses every day so her care varied. I had some nurse's training in high school and a couple semesters in college, so I was able to step up to nearly their level and show them I knew more than the average bystander. I insisted on being able to help in her care and bandaging, as there were some aspects of it that were painful and intrusive (she had to have gauze packed in the bat-cave that had been her armpit) and she trusted me more to do it gently, which helped her relax, lessening pain and anxiety. After the first week, many nurses openly admitted to others that I knew the bandaging as well as any of them, and told student nurses to listen to my input.
It was actually mildly entertaining when a new student nurse would stand in ... we would warn her to brace herself for the "meatcicle" when the old bandages came off, and she would just smile and say "I'm sure I've seen much worse," until the arm was unwrapped ... dripping blood, the entire upper arm just bare muscle all the way around, the forearm looking like a long glove. The looks on their faces were priceless; color draining away, the sour expression as they swallowed the bile rising in their throat, the unconscious step backward ... one even had to sit down. I'm terrible to laugh at such things I guess, but I had to have some outlet for the frustration. But I digress.
Most of you don't have any nursing experience, but a lot of nursing is common sense, listening to/responding to the patient's needs/concerns, and simple cleanliness. These are things you can spot and influence, and even say "hey, if I can see this, why can't you?" In example: because they were giving her iron pills, every morning after breakfast, she'd need to poop. But she couldn't reach to wipe, so if I wasn't there super early (before visiting hours, which regardless of what anyone tells you, ARE negotiable depending on circumstances) she would have to ask a nurse or orderly to do it for her. One woman who really needs to have her butt kicked up between her shoulders (who freely admitted her biggest goal as a nurse was to land herself a doctor) decided that a rubber glove wasn't enough protection; she would wrap a towel around her gloved hand and wipe poor Doreen THE WRONG WAY. I would like to know what nursing school ANYWHERE teaches people that you should wipe someone's butt from back to front, smearing her vagina full of poop. It took me an entire package of bed/bath cloths to clean her out when I got there to see her crying (the way I would find her most mornings). After that, I started coming earlier and actually stepped between Doreen and that stupid b&$@# once, saying "I'll do it" with a measure of assertiveness in my voice which I think properly conveyed that I was going to do this if I had to sit on her chest to keep her out of it. Being larger than most people you meet DOES have it's advantages. Don't be afraid to use whatever you've got.
You not only have to police what is allowed to touch your loved one, but also their environment. First let me say that if NF or any kind of virulent infection like MRSA is present, inform doctors/nurses that you are aware that exceptional precautions must be taken in cases like this, one of which is to keep the patient in a PRIVATE room, for the protection of the other patients as much as your friend/family member. They kept putting people in with Doreen who compromised her health and were filthy and rude, and so were the family members who came to visit them. I should have called the police and asked them if there was any way to enforce the rule posted everywhere that said that children under 12 would not be allowed on patient floors with no exceptions, but 16 people would be hovering around, with the children completely unsupervised, straying to our side of the curtain, spreading germs everywhere. The nurses and doctors I complained to were like "yeah, but they bring 'em, so what're ya gonna do?" It's called tell them to take their brats back home and don't bring 'em back.
One of Doreen's roommates in particular was disgusting; no grasp of personal hygiene whatsoever. She always had poop smeared down her legs, which she would leave on the common toilet and track on the floor, then lied when Doreen called a nurse to ask that the toilet be cleaned up for her use. The woman told the nurse she "hadn't even been in there that morning, it must have been her." The nurse's response to the situation was to wipe the seat with a plain towel, no disinfectant, and throw a towel over the smears on the floor (no lie). Doreen called me and I brought Lysol and cleaned the bathroom myself. Once, when I asked a cleaning lady if I could quickly borrow her disinfectant spray to spray the soles of my shoes because I had just stepped in something, she refused. Something in broken English about not being allowed. Her solution was to spray a paper towel on the floor and let me step on that ... yeah, that'll get in all those crevices. Let this be a lesson ... 90% of the cleaning staff couldn't care less about the patients or even whether they do a good job. So don't trust them unless it's an individual who has proven themselves and earned it. It doesn't make you a bad person to withhold trust until it's deserved ... when something makes you think "hey, wait a minute ... " that's your instincts telling you something's not right. If women all listened to our instincts rather than letting others tell us we're being silly, paranoid, etc, the world would be a much better place.
Keep after them about not leaving medical waste/garbage lying around ... and realize that stuff is wrapped in sterile packaging for a reason. If you see anyone, even the freakin' Surgeon General of the U.S., drop a needle and then pick it up and attempt to still use it, you block them from your loved one, and tell them if they don't throw it away, wash their hands, reglove and use a new wrapped needle, you WILL call the police AND the media. This isn't a game. A neighbor of mine when I was a teen died in the hospital when he had only gone in for a hip replacement ... he acquired an infection there, which is no surprise as his wife found a nurse about to use a dropped needle on him and chewed her a new one, thinking that would stop the neglect ... but you can't assume that anyone knows or cares what they're doing.
I became such a pit bull about Doreen's care that I got a reputation ... I think they threw a party when we left. Some of the staff were grateful for my presence though, because it meant they didn't have to do every little thing for her. Again, orderlies didn't care, they'd set a meal tray down in front of a woman whose right arm was bandaged and nearly useless, and walk away without even asking if she needed a nurse to help feed her. I would help her toilet and bathe, wash her hair every other day, make sure she had plenty of clean gowns stashed (there are very few of the gowns that will cover an average person's body adequately ... in order to feel fully covered Doreen had to wear two, one backwards and one forwards. And because of the nature of her wound, she had to have the kind that have snaps to close the arms, so one could be left open. It was my job every day to hit every bedding cart on the floor to gather up all the right kind/size ones and store them in the bottom of her nightstand, so when one got stained I could change it immediately, as opposed to her sitting with goop all over her until a nurse would go look for the right kind, invariably returning at least once with the wrong kind. Her bedding also had to be done a certain way for her comfort, with extra pillows propping up her arm and an extra sheet doubled over stretched across the middle of the mattress as another stain barrier, so one stain would only mean the changing of that sheet, instead of the whole bed. The nurses saw what a good job I was doing of changing her bed daily, so they just let me do it, again probably grateful for one less bell to answer (ha ha).
Doreen needed extra protein in her system before they could do the skin graft, so the nurses and doctors told me I could bring her anything she wanted to eat, anytime of day (she would usually only be hungry at night, when all the night crew would bring you was milk, juice, graham crackers or jello. So I went to the Jack in the Box down the street and brought in burgers and paninis, anything to get her to eat). The night crew, with the exception of the security personnel, came to appreciate my help and even told me when to hide from Mr. Rent-a-cop. I would usually stay past midnight and only go home for a few hours, returning about 5:30-6:00 AM. The final week of her stay, after the skin graft, required that every 2 hours, someone turn on a sunlamp with a 15-minute timer to dry out the gooey mess of the donor area on her thigh. Not one nurse ever did even one of those treatments. That whole week I slept in a chair beside her bed, my watch alarm going off every 2 hours so I could get up and start the lamp, then plunk back in the chair and resume snoring. I only went home an hour or so a day to feed the cat and do laundry. But I got 'er done.
Don't be afraid to double-check a doctor's work and don't believe that claptrap they sell in the movies about counting sponges and other stuff because it's a fairy tale. They used dozens of big nasty staples to attach Doreen's thigh skin to her arm, and dozens more to attach a weird bandage soaked in petrolatum (Vaseline, basically), which made her sick and made everything she tried to eat smell and taste like it (ewww), to the donor area on her thigh. When they took those out, they didn't seem to care if they got them all or not. When I saw some had been left in on her thigh, it took nearly an hour of badgering to get someone to come take them out, then they wouldn't listen to me and overlooked one that was under a flap of the weird bandage. I was pissed off and didn't care anymore. I went out to one of the supply carts and stole one of the instruments they use to remove the staples (no, a regular staple remover won't do; it has to reshape the staple in order to pull out the ends without tearing skin) and took the last staples out myself. I even took it with us when we left, which was good because there were a couple others I hadn't seen that I had to take out after we left. I had learned to hoard bandaging like I did the bedding. Doreen's sister-in-law bought three pairs of round-tipped scissors since the nurse's were always missing, and because of a student nurse jabbing those stupid little pointed scissors directly into one of Doreen's muscles. That was enough for me to permanently ban their use anywhere near her. When we knew she was being discharged the next morning, a very nice night orderly came to say good-bye, patted the boxes of bandages I had hoarded and whispered "take everything you can, they'll just throw it all away since it's been compromised being in a patient's room." Thank God for that man, it was the best advice anyone there ever came up with. That stuff is expensive and dammit, you're paying dearly for it, you have every right to it. Hell, ask for more of stuff you use a lot. They're supposed to send you home with enough bandages to care for the wound for however long the doctor thinks you will need. When the doctor is ready to release you and talking to you about aftercare, ask that they either have a nurse bring supplies for home, or write out an order that allows you to pick up supplies at some central supply room before you leave.
The best thing to do is educate yourself as much as possible so you can tell when the so-called professionals aren't living up to their expensive education. When Doreen was in the ICU after the first surgery (they had let her stew for 2 days, only taking her in for emergency surgery when she went into END STAGE ORGAN FAILURE ... apparently they were only prepared to do the bare minimum the law requires ... Hippocratic oath my Aunt Fanny) I was at her bedside, talking to her and singing a lullaby she used to like having me sing her to sleep with when she was sick. A male nurse tried to discourage me from staying, first saying "she can't hear you, you're wasting your time" ... my response was that there was plenty of research proving that people in states of unconsciousness CAN hear what is going on around them. Then he talked about how she needed sleep to heal, and told me I was "disturbing" her. I got belligerent then, asking "how can I disturb her if she can't hear me? Make up your mind!" At that he finally left me alone to keep vigil, to give her something familiar to keep her anchored to this plane of existence. You have the right to do this, and frankly, the majority of medical personnel don't care if you miss the last moments your loved one draws breath. They told her brother and sister-in-law, who called the hospital after I had E-mailed them, to not "bother" coming down that night because she probably wouldn't make it through the night anyway. They suggested calling the next morning, and if she had survived the night, then start their journey. It made me wonder if it was the same moron who tried to keep me from singing to Doreen. Oh, and about that ... the first time she saw me when she was conscious and in a regular room she asked me if I had been singing to her. I said yes and asked if she remembered what I had been singing. Though groggy and on enough morphine to stun a horse, she didn't miss a beat telling me it was "La La Lu" from "Lady & the Tramp." I wanted to go beat the stuffing out of that guy then, but Dor wouldn't let me. She's just too nice.
August 7, 2006
I am trying to raise funds for a wheelchair, any donations would be great. Thank you!
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