I don't usually write
end-of-the-year holiday letters. Usually I don't think I have done anything
unusual enough to be interesting. This year I have broken (you should excuse
the term) new ground in disability—I have spent the last three months without a
hip.
The story begins in 2008. Sometime in 2008 my left hip started to hurt, and in the summer I realized it had been hurting for a long time. So I went to see my hip surgeon, Dr. Dayan. Taking a new X-ray to check, he discovered a luminosity in the area of the acetabular cup. (The acetabulum is the area of the hip bone into which the head of the femur fits.) It was apparent there was a change, but why was a mystery.
The first guess was that the heads of the screws holding the acetabular cup in place had worn away pieces of the ball of the the thigh part of the prosthesis. Then, for some reason, those scrapings were being forced through the holes in the cup, and being collected behind it. That idea was better than the other possibility, which was that there was an infection.
There was no way to be sure at that point, so all he could was check my blood work and have me come back in 3-4 months for another X-ray, and then have me come back again in another 3-4 months if/when there was no change. (lather, rinse, repeat) This went on until the end of 2008, when I told him that if he was going to have to operate, I wanted him to do it before the end of the year because as of 2009 we were going to have to change our insurance, and I didn't know what kind of trouble there might be. (I was afraid they wouldn't cover the surgery because it was for a pre-existing condition. I didn't find out till the the beginning of of 2009 that insurance companies couldn't do that when there was a forced change of coverage.) My surgeon, however, was adamant—no surgery until he said so, and until then the only thing we could do was to continue doing X-rays every 3-4 months.
The next several months were painful. Mobility was an issue as well. Sometimes I could walk without any assistance; other times I needed a cane and even crutches once in a while. It was wearing and depressing. Ethan, observing changes in my mentation, urged me to see my regular doctor—Dr. Hegazi. He went along with me to make sure I wasn't coming down with senility. (It was one of those memorable moments of motherhood: he was trying to teach me something on the computer but I wasn't getting it. Finally, in frustration, he burst out, "Mom! You're being stupid.")
The doctor observed that rather than having memory changes, it seemed to him that I was being irritable, and he suggested I talk to a shrink-type person to see if I needed to change my medications.
Well, I couldn't see the shrink who first put me on Effexor because he had retired, so I arranged to talk to "our family shrink", Judy (who is a social worker, so she couldn't order meds), to get an evaluation. Judy and I bounced a number of ideas around, and one of them was 5-element acupuncture. After a couple of weeks talking to people, I got a referral to a woman in Williamsburg.
My first impression of Margaret, my acupuncturist, was that she had as many freckles as I do. I took to her immediately on that account: she was an "us," not a "them." 5-element acupuncture is different from "regular acupuncture" in that it is a health system rather a treatment for a specific problem.* Thus, the plan was that I was going to see Margaret once a week to improve my overall health as well as to treat my pain, frequent UTIs (urinary tract infections), and beginning heart failure. We did work on the hip pain, though, and over the course of a couple months, I was finding I had much less pain and more ability to walk without any assistive devices.
Then finally, in August, there was a change in my X-rays: the cup had clearly moved! This meant it was not attached as it should be and would need surgical intervention. Dr. Dayan told me to arrange to go to the Hospital for Joint Diseases for an aspiration of the hip joint first, to make sure there was no infection. He also told me to "protect my weight bearing." I wasn't quite sure what that meant so I jokingly mentioned it to my PCP (primary care physician, Dr. Hegazi.) when I went to see him about a possible UTI, and he explained that I needed to be careful of getting a hip fracture.
Well, I did turn out to have a UTI, which meant I couldn't get the hip aspiration done until I was off antibiotics. So I had not had it done by the time I saw my surgeon again—a fact that seemed to upset him more than I had anticipated. Moreover, when I told him my PCP had told me I had to be careful of getting a hip fracture, my surgeon said, "I think you already have a hip fracture."
He was sufficiently upset that I hadn't had the aspiration yet, that he told me to go to the Immediate Care department of HJD (Hospital for Joint Diseases) to be admitted on Sunday (it was a Wednesday). The plan was to have the aspiration on Monday, and if it showed no infection, as he (and I) suspected it would, to have surgery later in the week.
You know what they say about plans? (The best plans laid plans of mice and men, gang oft agley [which I translated as "go awry", because I wanted to play with the words.].) They were right again. the first wry was that after months of office visits that the insurance company had paid for, they discovered, when faced with a hospitalization and surgery, that my surgeon was not, in fact, covered. (Some other time maybe I will tell you about all the hoops we had already gone through with these guys and whether or not they cover my surgeon.) We found that out when we found I was rather suddenly being discharged. With no clear idea what was going on, I went on home with an appointment to see my surgeon one week later.
The one good thing about the hospital stay was that I got a definition of what it meant to "protect my weight bearing"—it meant I had to learn to walk without using my left leg. Failing that, I could do "toe-touch weight bearing," i.e.: tiptoe with my left foot using an assist device. The preference at HJD was regular crutches (the ones that go to your armpits) but I was more comfortable using the elbow-length type. At any rate I got enough PT training to go home and get up the steps into the house. However, the flight of stairs to my bedroom, and my lovely new $1200 mattress, was out of the question.
So we got home and began the process of turning the living room into my bedroom again—on a sofa-bed type mattress with boards underneath to protect me from the discomfort of the "springs"—bringing the commode in from the garage—all that good stuff.
At the next appointment with the surgeon, we got the second wry—the hip aspiration had grown out staph. Which was a real problem now that I didn’t have a surgeon. Dr. Dayan made a few calls while we were there and set it up for a colleague of his, Dr. Slover, to do the surgery.
From there we went directly to the third wry – Dr. Slover wanted me to be admitted right then. So back we went to Immediate Care and greeted all our old friends, which is my clever way of saying I got readmitted. This time, however, Dr. Slover wanted a full set of X-rays of all my artificial joints. That turned out to take a while, because the X-ray tech seemed to have a bit of trouble getting my right shoulder. Which, in turn, leads to the fourth wry.
I first met Dr. Slover the next day when he came in to see me on rounds. After asking me about my hips, he asked me how my right shoulder was. I told him it hurt (which has been a less pressing problem for a while and I had blamed it on using a crutch/cane) and he told me he was not surprised since it looked as though it was dislocated.
Since Dr. Slover didn’t know me, he had to redo the hip aspiration, and while he was at it, he did an aspiration on every joint I’d ever had infected. All of them came out negative, even the hip, but staph doesn’t go away without antibiotics, so instead of just repairing the cup, he was going to remove the whole prosthesis.
I had been through this before when my right shoulder was infected. First the infected joint is removed, then they give you IV antibiotics for 6—8 weeks, then observe for 4—6 weeks off antibiotics to make sure the infection is gone, then the joint is put back in. Now, going without a shoulder for months is one thing, but a hip?
Nevertheless, at roughly 1 PM, my surgery started, and 18 hours later, they let me wake up. This interval of lost time was not as entertaining as the last. That time I spent from Saturday to Tuesday playing role-playing games in my "sleep"; this time was just a blank punctuated by pain. And I woke up in the Intensive Care Unit.
The surgery itself took about 7 hours. There was a lot of difficulty removing the steel from my thigh bone and apparently I lost a lot of blood. (Acupuncture let me down here: at midnight, just before I was made NPO, I had taken an herbal tablet that Margaret had recommended that usually limits blood loss. I ended up needing 4 units of blood during the surgery and 2 more during the next day.) The duration of the surgery combined with the blood loss gave me pulmonary problems such that they felt it needful to keep me on a ventilator overnight.
I didn’t actually wake up awake. They had me on IV morphine for the pain, which I was able to give myself by pushing a button; thus things were foggy. That lasted about a day, and then they switched me to something else which I can’t remember. At least I don’t think they restarted me on Vicodin yet. Still, they got me up into a chair that evening. That was an adventure and a half, about which, the less said the better.
I stayed in ICU for a couple of days, and 2 more units of blood. They had a new device to annoy me with—a “BiPAP” (“Bilevel Positive Airway Pressure”) oxygen mask that I had to wear when I went to sleep. It’s a mask that is triggered when I inhale, forcing more air into my lungs than I would normally get when I breathe. Dr. Slover told Marc that I needed it because I snore and that made him suspect that I had sleep apnea. (I had, in fact, been planning to have a sleep study done before all this other stuff happened. But I haven’t had it yet and I don’t know if I really do have sleep apnea.)
Then, in a couple of days, they moved me out to a regular floor and rehab began. Because of the X-rays on my shoulder, mobility was a more-than-expected difficulty. My shoulder surgeon had stopped by while I was in pre-op and told me he didn’t think it was actually dislocated. Still, the PT team was treating me as though it was. That meant crutches and a regular walker were out of the question. What they came up with is a thing called a “platform walker”—it’s a regular walker with elevated armboards attached to the sides, so that instead of my hands gripping a horizontal bar, they gripped a vertical bar attached to a platform my forearms were strapped to. It was cumbersome and awkward, but it did, in fact, work.
After hobbling around a few days, I managed to walk as far as the door to my room. The next biggest problem I had actually was trying to get into the post-hip-surgery chair, which is several inches higher than a regular chair. Use of this chair is a part of what are called “hip precautions.” They are designed to protect the new prosthesis from getting dislodged before the bone has had a chance to grow around the prosthesis and anchor, which takes a few months. I kept asking why I was on hip precautions since I didn’t have a hip, but no one had an answer.
They kept me in the hospital for 10 days, which was a surprise because previously it was 2 days post-op and then out—one good thing about this insurance. A second positive thing was that my old nursing home was not on their plan, so I had to pick a new one. I have to say I was glad to be able to choose one that didn’t have a kosher kitchen because that kitchen served fish a whole lot more than I like. So, on the 21st of October, I was moved to the Center for Nursing and Rehabilitation in Prospect Heights (identified as The Facility, henceforth). It was late in the evening when we got to The Facility, so all that happened was meeting my evening nurse, Ms. Hines. Ms. Hines is a warm caring person who loves her job, and it shows. She was a comfort to me the whole time I was there, tucking me in at night and remembering all the little details of how I liked my room at night.
Every new admission means going through all my history and medications, which are both extensive, and there are always problems getting my meds straight. The next day began this process of introduction. Every department sends someone to the bedside to meet and assess you (OT, PT, Social Worker, dietician and, it seemed, half a dozen others). They all take a history, and I got very tired of repeating myself. So my advice to those who want to be prepared—take your history and list of meds on 3 x 5 file cards. It doesn’t stop all the repetition, but it helps. And everyone who takes your history will think you’re amazing.
One of the first annoyances of being in a facility is that you have no privacy. All that is between you and the rest of the world, starting with your roommate, is a curtain. All the staff at this facility, though, at least knocked on the doorframe before they came barging in. Sometimes they even waited for permission. It was novel.
The second annoyance is that you have no control over what happens to you. Meals, meds, when you sleep, when you have therapy—your life is ordered by the people around you. You never really get a chance to say “no” to any step in the process, and if, for instance, you want your pain med when you ask for it, rather than when the medication nurse gets around to it, you have to spend a few days learning what you have to say and whom you have to say it to in order to get it accomplished. A med nurse who is an idiot could be giving you the wrong meds and you can’t tell because all the pills look different.
The net result of these annoyances is an intense feeling of vulnerability because the bottom line is that if you can’t get out of bed by yourself, “they” can close your “privacy” curtain and ignore your call light till hell freezes over if they want to, and if you scream for them they might close your door, too. It only takes one or two lazy incompetents to drive home just how completely dependent you are.
My biggest problems over the next few days were getting someone to give me a bedpan before I wet the bed, and getting my pain med when I asked for it rather than an hour and a half later. I was just beginning to figure out how to manage when my next adventure happened. I have to preface this by telling you a bit about my PT.
My physical therapist, Kathleen, was a jewel beyond measure. When I first went down to the gym, she listened to all I told her about the “platform walker” and my projected course of treatment. She just nodded (and looked askance at the idea) and said, “Let’s just try the parallel bars,” or “Let’s just ….” She never argued; she just calmly and patiently went on with her plan of care. And she was apparently the only one who listened when I said, “Why do I need to worry about hip precautions when I don’t have a hip?” because after I asked her, they all stopped drilling me on them. So, I tried the parallel bars and discovered that I could manage. (The parallel bars are just like the ones gymnasts use, but adjusted to a height for walking while holding the bars.) At first I was only able to go about halfway, but eventually I was able to go the whole length and back again. My biggest problem (after endurance) was to learn to keep my steps shorter. With toe-touch weight bearing, you can’t really swing into a step the way you do when you are simply walking. In that sort of step, my non-hip would be bearing weight for too long, and when I tried to move, I would tend to collapse to the non-hip side. Once I had learned how to pace, I graduated to a standard walker. (A walker with no wheels because it couldn't roll when I was leaning on it for so much of my weight and balance.)
The first thing we worked on each day was transfers, so I could get from the wheelchair to the bed or toilet and back. Kathleen came to my room and “gave an inservice” (i. e., taught the attendants) on what was needed to assist a person without a hip in transferring, and after a week or so, she came up and approved me for independent transfers. Yay.
So, I was beginning to tool around the floor and go to the bathroom on my own. Also, I was beginning to learn who was who on the floor—things like who was assigned to me, who was in charge, who was doing meds and who was supposed to be doing meds but spent more time chatting with people and teasing (cruelly, I thought) the patients. Thus, when I had complained to a couple of people that my commode in the bathroom had a bad leg and not gotten anything done, I went to the head nurse to report it. Alas, poor Yorick, that’s when I fell. Sitting on the commode I leaned over to throw something away, and the leg collapsed under me. I screamed as I was going over so help was there immediately, but as I was going, I could see that my head was going to hit the wall, but my shoulder was not. I was afraid I would break my neck, literally. (That fear stayed with me for a long time.) My next fear, once they got me picked up, was that I was going to lose my hard-won “independent in transfer” status. (Thankfully, that did not happen.) Later that night, as I was going to bed, I began to be afraid I was going to have a subdural hematoma, so I told my evening nurse that I had hit my head, in case I became semi-conscious or worse.
The next day or so was fairly normal, except I kept getting dizzy. After a couple of days of this, they sent me to Methodist Hospital to be evaluated.
The Methodist Hospital ER is huge—something over 40 beds—and I was put in a bed towards the end of one section. It is not a good thing to be alone in the ER. You need someone to get the nurse when your call button doesn’t work, and talk to when the TV doesn’t work. Still, they got me checked out in an hour or so, and then I had to wait for another 2-3 hours for the ambulance to take me back to the Facility. When the doctors finished with me, they gave me a nine-page summary, which I neglected to put in my purse. So when the ambulance did come, they took the papers from me. I argued in vain that these were my records. Any lawyers out there who can tell me the magic words to use so my records don’t get taken from me, please tell me what they are, because by the time I got them back from the staff at the facility so I could make copies, 4 of the 9 pages were missing. After I got out of the Facility, I went back to Methodist and signed a release to have them send me the records. They did—but it was the whole 40-page chart, which made finding the info I wanted more difficult. I was particularly interested in the CAT scan, which showed that I now have 2 areas of damage in my brain without any awareness of something happening. I’m speculating that it may be related to the problems during surgery that led to the pulmonary edema. It’s distressing to learn that I may actually be becoming senile.
The next piece of documentation I wanted was the shoulder X-ray report. I was pretty sure that one doctor had said I did have a dislocation, and another had said I did not, but I couldn’t find it. I guess the senility is kicking in.
The dizziness seemed to be no big deal, since it was transient. The doctor called it a “benign postural vertigo.” The frequency of the episodes has decreased again, so even if I did do damage, it seems to have healed.
So, after an hour of treatment and several hours of waiting, I got back to the Facility around midnight, and back to my “regular” routine the next day.
I had to be in the Facility for 2 reasons. The first was IV drug therapy to make sure the infection was gone, and the second was PT. Kathleen, my physical therapist, helped in both matters. I had been getting increasingly disturbed by problems with my meds. There was often a long delay when I asked for pain meds, and almost every other day I was having to explain my home medication regime (you have to call it a regime when you are taking 20 pills a day) and try to get them to give them to me. It didn’t help that I was getting my antibiotic at random intervals, and some days not at all. Some days they gave it to me during the time I was supposed to go to PT. Apparently, I was also beginning to get a reputation as a “difficult” patient. (Who, me?) I’m not sure what prompted her, but Kathleen went to the staff on my behalf, telling them that I was a nurse so I knew what things were like from their side of the situation. She also explained to them how worried I was about the antibiotic treatment being screwed up and not working, and/or making me resistant to another antibiotic. After she talked to them, there were a lot fewer arguments about my drugs, and we got a regular time set up for my antibiotic, which would interfere minimally with PT and my sleep.
Joseph, the head of PT, had a trick for when people did something that showed a lot of progress: he would stop stock still, open his eyes wide and drop his jaw open. The first time I used the walker I was halfway (the short way) across the gym when he came into the room and he made that expression of shock, and scared me that I had done something wrong. So I stopped too. “Am I doing something wrong?” I asked. Joseph just stood there and from behind me I heard Kathleen say “I just turned around and she was gone.” Thus I learned that a patient doing something for the first time is expected to have her therapist right next to her in case of accidents. But later I learned that Joseph’s reaction was really a way he responded to a patient when she makes a significant step in her progress.
My next step was to learn how to climb stairs. If I didn’t, we would have to buy another ramp to get the wheelchair up into the house. The first one we had bought, which had been stolen, cost $1000. Fortunately, it was stolen when I was no longer having to use it. The Facility social worker had found us a couple of places where they were only $500. Still, it would be even cheaper if I could do it on my own.
The process of walking was a sort of step, hop. First, move the walker forward, then swing my bad leg forward, then, standing on tiptoe of the bad leg, bring my good leg forward. Hopping up stairs is a little more complicated. There is a mnemonic PT people use to help you remember how to move on stairs: “Good goes to heaven; bad goes to hell.” It means that if you are going up, you lead with your good leg, and if you are going down, you lead with your bad leg. So we practiced every day on the practice steps. It started with a lot of safety concerns: a “gait belt” around me so there was something to grab in case I started to fall, Kathleen on one side and another therapist behind me. We discovered that I had very little exercise tolerance, so stairs would always have to be the first activity. Otherwise I wouldn’t have enough strength in my arms and good leg to actually lift my whole weight.
The second person who was my backup would vary, depending on who was free whenever I was climbing, and eventually it seemed the whole staff was there cheering me on.
One of those people was Igor, who had noticed an SF book on my bed one day and was immediately intrigued. It seemed there was no one else there who read SF! He eventually borrowed the book (an anthology of Canadian writers that Ethan had brought back from Worldcon) and I became water in the desert for him.
I learned from Igor that there are more books and stories in the Ender universe than I had known about. He even gave me a collection of shorter pieces. I had to introduce him to Marc and Ethan, and when I did they all started talking about Douglas Adams, which led to Marc’s making a CD of the radio show to give Igor.
The staff at the Facility was very diverse. Igor was a Russian immigrant, Joseph and the head of Occupational Therapy were Asian, and my personal OT, Swabbie, was from India. Many of the Americans working there were bilingual, Spanish and French/Creole, and obviously characters. I really liked being in that environment.
One of the characters was the musical therapist, Ginger. The first thing I noticed about her was her socks. They were colorful striped knee socks, which didn’t match. I told her I would have to introduce her to my son, who liked to wear a variety of socks, and she took her shoe off to show me that the toes were individually knitted so that they fit like gloves.
Since I already knew how to use the dressing tools (needed to put clothes on when you are recovering from hip replacement), there wasn’t a lot for Swabbie, my occupational therapist, to do with me. She kept me exercising the parts of me that PT wasn’t working on, and she liked to play with my hair. She was very excited by my corn rows. She liked them so much she got a hair net from one of the kitchen staff for me to use at night! (Unfortunately, the net didn’t stand up to the BiPAP machine.)
As I moved through my days at the Facility, I found that, in terms of my levels of anxiety and anger, I was shooting myself in the foot. I finally realized that I had to remember that I had to change my point of view—I had to remember that I was not a nurse here. “I am not here as a nurse” became my mantra every time I saw or heard bullshit going on. It probably saved my blood pressure a number of times.
Other movement through the days taught me that leverage needs two hips. I learned to look for places to grab before I tried to move. I kept thinking of how mountain climbers always have 3 points of contact before they move.
Step by step, eventually the OT, PT, and IV antibiotics all got accomplished and I was able to come home. But there was another wry waiting for me. Since I was being given Coumadin to prevent clots related to immobility, I needed to have my blood tested every week to measure the length of time it took my blood to clot. I had been home only 4-5 days when my PCP, Dr. Hegazi, called to say I needed to go immediately to Methodist Hospital ER because I had Coumadin toxicity. By the tests from the doctor’s office, my INR (international normalized ratio: measures of the extrinsic pathway of coagulation. They are used to determine the clotting tendency of blood, in the measure of warfarin dosage, liver damage, and vitamin K status. The reference range for prothrombin time is usually around 12–15 seconds; the normal range for the INR is 0.8–1.2.) was 13. They’d been aiming to keep be between 2 and 3. By the time I got to the ER it was over 16, and I was later told it had gotten as high as 19 before the Vitamin K they were giving me began to take effect.
I rated a bed closer to the front this time and I was a little surprised that I was sent to a bed immediately from triage. I began to understand why I had kept on having a slowly bleeding nose and some bleeding from my gums. The night before, I had been clipping a hangnail and it had started to bleed, so I put a bandage on. It kept oozing through, which puzzled me until we got to the ER—then “doh!”
Methodist Hospital has had an influx of big money. The lobby of the place looks like a hotel. The thing that struck me, though, was that when they brought me supper, the garnish on the food was a flower—I didn’t know whether to eat it or not!
They kept me for an increasing number of days due to a comedy of miscommunications. I would go on in amusingly boring detail, but it is now Feb. 7 and I need to be getting ready to go to the hospital at the crack of dawn. I need to have a couple of more tests and X-rays done, and then at noon, if things go well, I will get a new left hip. So this missive to all of you is to explain why I didn’t make any bread to give away this holiday season or mail out any holiday cards. Maybe I’ll get the cards out for Valentine’s Day. (It always seemed to be more fitting a day for them to me anyway.) But the baking will have to wait till next year. Y’all can start getting your taste buds ready in November.
* quoting from an email from Margaret, "FIVE ELEMENT ACUPUNCTURE is a powerful healing discipline based on nature. It uses the natural energies inherent in all living things to promote the body's ability to heal itself. Restoring the balance of natural energy within a person, it harmonizes the person's relationship to the world. Treatment is individual and takes into account the beautiful complexity and potential of each person."