Beadtime Stories home page of Elizabeth Ann Scarborough.htm

A Leg to Stand On

Late Oct-Nov. 19, 2008

Many years ago I fell hard on first one knee and then later, on the other, right on the knee cap. For the last two years, since arthritis has set in, I've gone from climbing ladders to paint the entire inside of my house and most of the furniture to barely being able to walk to having to use the handicapped carts at the stores that have them. I haven't been able to walk more than a few feet without the help of a walker. I am 61 years old, too young for medicare and too precariously self-employed to afford insurance. As an in country Vietnam war veteran I am entitled to care from the VA however.

The VA diagnosed my condition as severe osteoarthritis but refused to even let me see an orthopedic doctor because I am too heavy for their standards--I was supposed to lose 200 pounds without being able to walk and then they'd talk to me. That or have the lap band surgery that the VA docs considered a panacea for all that was wrong with fat, unsightly me. Mind you, the VA would not pay for the lap band surgery either. I told them if I was going to have to pay for a surgery, I'd have one that would fix what was broken, thanks very much, since I am generally in good health except for the arthritis. The arthritis clinic sent me to get a brace made and to physical therapy where I learned a few exercises (some of which could not be done in my small house) and got a very nice rollator walker I call Blue Sidewalker. The arthritis docs gave me a topical cream for my pain and an NSAID (aspirin type) pain med which promptly made my kidney function tests go ballistic. So for the past two years it's been Tylenol and limited activity. In the wet winters around here, when the barometer is falling, I've felt as if I was walking on two broken legs.

Finally, when I was paid for a new book contract, I decided to spend the necessary portion of it to get a procedure where the docs inject artificial synovial fluid into your knees to replace the fluid that arthritis and age take from the body. We have a good orthopedic clinic here in town so even though I had not approached a civilian doctor for help before, I went to see Dr. McGovern at the Strait Orthopedic Clinic. Naturally, he needed me to have xrays first so he could see the condition of my knees.

I was looking forward to feeling better when I went home. But there was bad news and ultimately good news. Dr. McGovern, a tall slender man who looks to be in his mid forties, impressed me as being exceptionally smart and very very interested in what he was doing. From the way he talked about his work, I could tell he knew his business and found it fascinating. He showed me my xrays and pointed out how far my knees had deteriorated, with significant bone erosion. He told me that the therapy I had come to him to receive would not help me because my knees were too far gone and that if I wanted to keep walking, I urgently needed a complete knee replacement on each knee. I told him I had been sure that I did need that but couldn't afford it, was uninsured, had a sporadic income that made me reluctant to take on a big medical bill commitment. I had planned to have the injections done to help relieve my pain until I was eligible for medicare. He said, "I don't care if you pay me or not but you need this surgery. Think it over. You know it can be dangerous. See if you want to take the risks but my advice is to do it now--the sooner the better. You cannot wait four years because by the time you can afford it, your knees will be so far gone it will be a very complicated surgery and I couldn't promise you it would give you nearly as much help as it will if I do it now."

I said okay and set out to try to find funding. I called the social worker at the VA and wrote to the congresswoman, Patti Murray, who is making it her mission to help women vets. But honestly, I liked Dr. McGovern and he inspired confidence. His commitment to helping me even if I couldn't pay him was a great sharp contrast with the medical sales pitches I'd received in so many other places telling me I had to have drugs or procedures I felt no need for and ignoring the problems I do have. I really wanted him to do it instead of an overworked VA doc who thought I was too fat (not an issue with Dr. M. as long as I kept my weight below the level where the hospital equipment could no longer meet my needs. That was a hospital rule, not his.) I figured the VA docs treating the kind of traumatic amputations and horrible wounds coming back from the war would be bored with an aging woman's precious knees. But they ARE precious to me and losing the use of them has showed me just how much they matter.

I went to social services and finally took my tax returns to the hospital business office. I had heard rumors that the local hospital would care for county residents on a sliding scale, but to my surprise and relief, they looked at my tax returns and said I was eligible for uncompensated care.

I schdueled the surgery the same day, for Nov.3, just about a month after my initial visit to Dr. M.

In the meantime, I enlisted the help of friends to get my little house ready for me to stay in it post op. Andy gave me hours out of four of her afternoons while she came over and did her domestic goddess number on my house, cleaning the bedroom left smelly and dirty beyond my ability to clean it after Kittibits' terminal illness. When I asked Jolly to build me some handrails to help me get in and out of the house, he built me a deck connecting the shed and the house, and having a lovely ramp and no step up to the main part of the deck so I could roll the walker up and over it. John helped me move furniture. Lea volunteered to be here during my surgery and for a couple of days after, despite having an ailing and elderly cat she was concerned about at home. There were blood tests and more xrays, another doctor's visit with the GP I had seen before I got VA care, to make sure I was healthy enough to withstand surgery. I was told to see my dentist and make sure I would not be needing any invasive procedures for a good long while post-op as these increase the risk of a very bad infection in the new knee. A lady from a company that rents Continuous Passive Motion machines and cryo (ice) machines to post op patients brought by the equipment at Dr. McGovern's office's request.

I read up on the procedure online and talked to the one other person I knew who had had both knees done--though she had done it elsewhere. Everything I read and everyone I talked to said it was best to do one knee at a time, take your pain meds as long as you need them, don't be a hero, use the ice and DO THE PHYSICAL THERAPY afterward.

I had one more doctor visit then the following morning, after the shower and the lack of food or water after midnight, Lea and I went up to the short term care ward, where I changed into hospital couture and after a short prep, was taken to the OR. A surgical nurse I had met on a previous visit and the anesthesiologist who had called me the night before met me in the operating room. I had expressed a preference for an epidural and sedation.

The reason I preferred the epidural over a general anesthetic was that apparently it works really well for knee surgeries and has less complications, and also, does not have the after-effects, respiratory and energy wise, that a general anesthetic does. When I was nursing, we were told that it can take as long as a year post op to recover your energy levels and so forth after a general anesthetic, And mind you, I have to have 2 in three months.

Unfortunately, the anesthesiologist had trouble with the structure of my spine and could not do the epidural so after deadening my gag reflex, he intubated me and that was all I knew. Lea told me that with these complications it was about five hours from the time I went into surgery until I came out of the recovery room.

I didn't hurt too badly and was on strong painkillers and my leg was immediately placed into one of the CPM machines. I had a foley catheter, leads for an ekg that fed into the ICU, an IV and a hemavac machine that collected the drainage from my wound. Not much was required of me that first day and a half until they took out my catheter, then I got lots of exercise getting up and down to the commode. The nursing assistants and RNs were all really good and helpful and I tried to give them plenty of time to wrangle my equipment before I had to actually do the deed they had come to assist.

One interesting thing was that I was operated on on the 3 rd and the 4 th was the presidential election. I did stay alert through the vote tallying or ask Lea to catch me up until we finally saw that Barack Obama had won. The hospital staff was all very excited and popped in and out of the room to see the election results during the evening. It was kind of like having an election party.

Physical therapy came in and started coaching me on some exercises I could do in bed. But then, as soon as my tubes came out, I was expected to wobble my way to the door and back. I was tired and it hurt a little but not bad. By Wednesday I was managing to get in and out of bed pretty well and could walk to the door and back with a walker.

Dr. M.'s assistant, Kevin Hines, a very skilled physician's assistant, came to see me and told me my hemoglobin was 8.08 which is very low. It should be up around 14. He feared that I would be too weak to cooperate with physical therapy unless I had a blood transfusion. Now, I agree to those in principle but this was a place where having too much medical experience (although somewhat antique by now) and too much imagination were troubling. I had seen transfusion reactions in Vietnam. I didn't want one. After talking to my mom, a friend who has been through lots of surgeries, and another friend who is very wholistically oriented but was once a radiologist, I asked the nurses to tell Kevin I wanted the transfusion.

The next morning I was to leave the hospital. The physical therapist came and had me walk to the commode, then down the hall about fifty feet, and finally to the bathroom where the nurse wrapped and taped a plastic bag over my wound so I could shower before going home. Then I called Lea, who came and helped me get dressed and with some help we got me, my suitcase, and my flowers, out the door.

I had had several visitors, my friends Nelda and Doris, Claudia, and others but a lot of times I was too spaced out from the pain meds to be able to carry on a conversation. I kept falling asleep.

I got out of the car and used my walker to get into the house and did just fine until I tried to sit down in my office chair. It was too low and I was so afraid I couldn't get up again but finally, fearfully, hanging onto my walker for dear life, I did. I got into bed, Lea, with difficulty, got me hooked up to my machines. Then of course I had to go to the bathroom and the walker will not fit in there or into my bedroom. So I used the same technique I've been using for the last two years and clung to furniture for dear life as I limped back and forth to the loo. It hurt. Poor Lea would start making a joke or ask me a question while I was on my feet and to her surprise, my sense of humor had totally deserted me and I snarled at her, yelled, bawled, and swore. I knew I had to do it but damn, it was hard. Mostly I wouldn't allow her to do anything but watch because she has her own physical frailties and I didn't want her to hurt herself helping me. But I finally told her that while I was on my feet between the bathroom door and the bed, it was a no fun no comment zone. I needed all my concentration just to make the trip.

Fortunately, it got easier. The day after we got back from the hospital, I realized I had just asked Lea to do too much that she wasn't trained or equipped for, I'd arranged with an RN friend working at Elevated Ice Cream to take care of me so she came over and showed Lea a few tricks, helped set some things up, and everything was so much easier after that. I wanted her to stay the night and help me in and out of the machine so told Lea if she wanted to leave, I thought we could manage. She gratefully decided to return to the aging cat Newton, who was a pussycat compared to an injured me.

Over the next couple of days Su helped me and encouraged me and I became more and more mobile. Then, on Monday, she came down with a cold. Normally this wouldn't worry me. For the last three years I've taken a mega vitamin preparation from the health food store called FATIGUED TO FANTASTIC and I, who used to have two or three bouts of colds and flu a year, haven't had a single one during the time I've been taking it. However, they hadn't let me take it in the hospital, even though I'd cleared it with the doctor first. A lot of odd things interfere with the coumadin they have you take to prevent blood clots so without a specific order, they wouldn't let me have my meds. And having had a general anesthetic, which is very tough on your respiratory system, just the week before, I knew if I caught Su's cold I could be in for pneumonia. I was so scared. I didn't know how I was going to cope without her. I need the CPM machine and the ice machine and a lot of other help. In the evenings, when Su had to work at Elevated, I had other friends come over, Nelda, and Claudia had already come. I'm not used to asking people to help me with these kinds of things.

But reluctantly, Su and I parted so she could get well and I could avoid infection. That first night she was gone, my friend Tania had arranged to come and visit me in the afternoon but with Su unable to resume her duties, Tania rearranged her plans to stay the night. Su came over briefly and gave her a lesson on the CPM machine and the ice machine and Tania, who is a brilliant musician and a very technically inclined person, handled it all with great skill. I was by then a full week post op. The next day Su returned to hear what the home health nurse and the physical therapist said about my progress. They felt I didn't really need the CPM machine and the ice machine any more, even though the doctor often has patients use it three or more weeks post op. The real problem was that with the set up of my bedroom and no help, I couldn't manage the machines on my own. The next morning after they and Su left, I called Nelda. Nelda is allergic to cats but came back and stayed the day and though I tried frantically to find someone else to cover the night, I couldn't even find anyone to hire so she stayed the night too and managed the ice machine, then finally went home so congested she could barely draw breath.

A lot of people stay in a nursing home or other institution when they first come out of the hospital. For me there were two reasons why I chose to go home. I THOUGHT I had arranged to pay for care for the first week but unforeseen circumstances tripped us both up, and also I have an aversion to institutions after so many years of working in them.

So after Nelda left, fortunately some of my calling the day before brought results and I was put in touch with a bunch of local ladies who do home health care. Turns out I knew both of the ones who came and considered one of them a friend, and really liked the other one. Care is about $18. an hour in our area, a bit more for an RN, a little less for an uncomplicated overnight. Between the two ladies, I covered another night, but the next afternoon, I felt I was ready to be on my own.

On Monday the 17 th , the two-week anniversary of my surgery, Arletta, the friend from the agency, took me to get a muffin, get my hair washed at my local beauty shop (since I still haven't braved my clawfoot tub shower yet) and to the bank. Then I came home and waited for Claudia to arrive to take me to the hospital to Dr. M.'s clinic again for my first post op visit.

I used a wheelchair there because it's a long way from the entrance to the doctor's office. I had a little trouble getting out of the chair because it was low but the nurse helped me by letting me use her arms to balance myself and I got up okay.

Then I had my staples out. This is not a fun part. I had taken myself off of oxycodone two days before as arthritis strength Tylenol controlled the pain just as well without the side effects. But next time I will take at least two more before returning to the doctor to have the staples out. It was like getting scratched by a team of sadistic cats at various depths and severities fifty times over, until my railroad track was gone. I cried, but I had known it was going to hurt and it did and it really was over sooner than I had feared it would be.

Tuesday I saw the physical therapist again and asked if I could drive since the criteria were being off the hard drugs and being able to move my right foot rapidly and with enough power between brake and gas. He said I could try and also showed me a possible way for me to get in and out of the shower.

This is in addition to my new full time job, which is my therapy moves. I have one thing to do when I'm out of bed, which is bend my knee back as far as it will go, hold it, bend it further and keep this up for thirty to sixty seconds 6-8 times four times a day. In bed I do heel slides that also flex my knee, much as the CPM machine was doing, but I am supposed to be getting it to bend to a greater extent each time. At the doctor's office, I had 84 degrees of flexion and I must aim for 120 degrees. To get full extension of the knee, which means being able to hold my leg straight enough that the under side of my knee touches the surface I'm on, I put my heel up on a roll of towels, drop the knee lower and lower and try to get it to straighten as much as I possibly can. In my initial doctor's visit, I had 11 degrees more to go to straighten the knee. On my first post op visit, I only had 2 degrees to go. I am of course aiming for 0. The reason this is a problem is that when someone has had bad arthritis as long as I have, the soft tissue, the ligaments, tendons and muscles, clench up and constrict around the knee until they won't straighten out, even when you have a new knee. So it takes therapy to stretch those soft tissue items back into dancing and walking shape when you have a sturdy new knee.

The third exercise is to put the towel roll under my knee and straighten my leg, pressing the back against the towel roll. I don't find this very difficult but I have to do it 20 times twice a day.

I'm not one for rigorous exercise but I am doing this because I must or throw away this gift of a necessary thing to help my life continue so I can walk, dance, maybe bike, travel, shop, all sorts of things I used to take for granted but have been unable to do for the last 2 years.

Probably in Feb I will have to have the other knee done as well. Already the therapist says as he watches me walk that if he didn't know it was the right leg that had surgery, he would think it was the left because I am limping more with it.

It is VERY hard to get my creative energy back but I am struggling with that too because I need to turn in a book in May and I know it's going to be a toughie. So meanwhile, to clear my head of this experience so far, I've written this to chronicle what's happened to me and maybe be instructive to anyone who needs the procedure themselves as to some of what they can expect.

I'll get on the ball and get more fun stuff done soon.

Thanks for your patience,

Elizabeth Ann Scarborough

PS: I forgot my most constant and attentive nurses, Cisco and Pancho, who (mostly) have been a huge comfort throughout and have given me lots of purr therapy and love.

Dec. 6, 2008

I've graduated from the therapist who comes to my house to going to the hospital for 6 more sessions. I had the first one with Keri on Thursday. She assessed my progress and gave me some ultrasound and ice. Unfortunately, I'd been walking around maybe too much and my knee was very painful so my extension wasn't good that day. I hate flunking stuff. Soooo--more exercises to try to alleviate the pain and increase the extension. Also, definitely must elevate the leg higher than it wants to go when I put ice on it. This is awkward and uncomfortable and confuses the cats.

I have managed to write 22 pages on the new book and think of some new approaches. Just trying to stay focused which is not all that easy with so much gloom and doom happening in the economy. You just KNOW that's impacting the publishing industry too and I am already teetering on the brink of being highly expendable and one of those experienced but older "workers" you see in other industries. The difference is that my job has always been so marginal there is no fallback.

I seriously urge all new writers, no matter what they give you for your first set of books, to keep a day job, marry well, and preferably be independently wealthy to begin with.

Jan. 7,

I am now finished with hospital PT--at least the supervised part. I only ended up having about 5 sessions instead of 8 but the most important part is doing it yourself at home. I have been, though not always with the intensity and in the quantity the therapists recommend.

Still, Keri said I was doing really well.

The problem lately has been that the left knee isn't keeping up with the right one. On the 23 rd , the first day of the heavy snows here, it buckled and I had to wait a few days to do more weight bearing stuff with it.

So now the next surgery is scheduled for Feb. 9 and here we go again. I do have several things in place I didn't have before but being sure I have enough people to help me for the first few days is the hardest part. This is my birthday present to myself this year. The right knee was my Christmas present.

At this point my right knee, although sore at times (usually mostly after doing the exercises) is not actually very painful--less so than the left one. It is also nice and strong and although not quite as flexible in a non-weight-bearing position it supports me standing, walking and kneeling for longer periods of time and with less pain than the left one.

Since I live in the Pacific NW, I can attest to the truth in the folklore about rain making arthritis more painful. For the last two years I have been in really bad pain during the rainy weather. Now I just notice I'm maybe not moving QUITE as well as I do on less soggy days, that I am a little stiffer even though I'm still doing my PT exercises, but it doesn't hurt nearly as much--not even the left knee hurts as badly because, I suppose, it has more assistance from the bionic knee.

I'm working really hard with it this month trying to get the bionic knee to feel as strong and natural as possible for when the other knee is replaced. Then I suppose I'll be needing to do PT on both knees once the left one is done too. But if the left one goes as well as this one, I really should be able to take walks this summer and maybe dance again and even bike. Now if I can get my therapist to show me how to get in and out of the tub for a proper bath without getting stuck, I'll be really happy.

The only thing that is really limiting is that I cannot kneel on my kneecap because it's been thinned to make way for the replacement and would break easily. So I have to figure out how to get up and down without kneeling.

I hope this information may have been useful to any of you who may need to go through this too or are thinking about doing so.

Take care and wish me luck, Ann