Survival Guide

Heather's Survival Guide to Knee Replacement Surgery:

This is written as a reminder to me, both for the things I will have forgotten between knee surgeries, and to refer to if I do it again in a dozen years or so. If you know anybody in the same situation, feel free to pass it along. I've already stolen or adapted many of its ideas.

Preparation:

This is optional surgery, so you will have time to prepare. Use it.

Start at home. Check out your chairs. Any one you use should be high, firm, and have sturdy arms. Never go for a rocker, being both unsteady and turning itself into a low chair as you lean forward. If you have access to a lift chair, even just renting one for a month or two, do it. It has a wide variety of positions for comfort, and moves you during that time when you are unable to do so yourself without major pain. Firm (fiber filled, like cotton) extra seat cushions can turn an otherwise suitable but low chair into an acceptable one, but check it out first. Squishy (foam) cushions are useless. The seat should reach and stay at knee level. Consider a rolling chair for the kitchen so you can roll back and forth rather than walking and standing while you prepare food, do cleanup, etc. Again, side arms and an extra cushion on the seat will be invaluable for standing up again, and roll it so the back is to a wall so it doesn't go out from under you and dump you on the floor.  You still can't get up from there, even if you weren't hurt in the process.

Find a folding chair with arm rests and sufficient height (cushions again) to take with you when you go somewhere. Don't ever assume your friends will have what you need, or have a clue how to properly help you out of their low chair. I personally recommend Coleman's steel camping chair, sturdy enough for even my weight and with a mini table attached to one arm. Along the same lines, find out where usably high toilets are, or stay home  unless the visit is so short it won't be an issue. Just because a public restroom has support bars and claims to be handicap accessible does not mean the seat will be high enough. You don't want to sit there until you either have completely healed or are willing to face the pain of standing up from it. Arizona is particularly lacking in seat height. Minnesota is much more knee friendly.

If you don't have a handicap height toilet at home and have been considering it, now would be the time. Either way, get a toilet seat insert which raises the height and provides sturdy side arms. Safety bars near the toilet, tub and shower, as well as stairs, should be installed. If your community provides walkers and bathroom aids free for a couple months, use the service.  The walker is a must. The shower seat is optional: it can take up all the room inside a smaller shower and turn into more of an impediment than a help. Ours sits outside during a shower to hold the towel and/or clothes up off the floor, then stores out of the way inside the shower when done.

The incision area needs to be kept dry for about three weeks. I didn't chose to go through the wrapping with plastic and tape routine, especially with my tape allergy, just to take a shower I wasn't quite ready to stand all the way through anyway. The first couple weeks I learned to either accept being grubby or cleaning with a washcloth in the stinky spots and leaning over the kitchen sink to shampoo. Check out your sink, planning how your walker fits into the process.

Scout out the house for pathway hazards. Small area rugs and clutter are easily tripped over. If you have large rugs, decide whether they will be a problem or lay flat and unmovable and are easily gone over. Train dogs and cats to move quickly out of your path, and beware of lap sitters, especially if they have the habit of accessing your lap by climbing up over your legs and knees. The lap blanket comes in useful here.

Practice moving. Take the walker around the house, making sure pathways are always wide enough. That box that got moved or the new chair may not be in the way when it's just you going by, but it might block the walker. Also note whether anything catches the wheels and figure out if you need to change it or how you lift vs. slide the walker past it. Get the critters used to the noise, and in fact make extra noise with it so they learn to get out of the way. Right now!

Learn to sit in the car by backing into the passenger side doorway (you will not be driving! At least not until you can go more than 8 hours past your last percoset before turning that key.) and planting your butt on the seat before any leg goes in. Then lift each leg under the knee with your hand and place it inside, noting where the door frame is in the way. For the first couple weeks, any slight bump hurts. Get out of the car doing it all in reverse, pushing yourself up and forward off the seat back and door frame into a stand. If you think you can just stay home, forget it: plan on heading out to three PT sessions a week for a while.

You will need to strengthen certain muscles in preparation for coping with the surgery and learning to use your leg again. You should be given instructions. They boil down to different ways of straightening the leg, pulling the heel in towards the top of your thigh in a tight bend, increasing leg circulation by flexing your ankles, and strengthening your arms to aid in standing up. DO THEM! No matter how much your knees hurt before surgery, do them. Painkillers are available. When you need to quit anything resembling blood thinners before surgery, including aspirin or ibuprofin, ask your doctor for a substitute that works for you such as percoset. Failing to follow through on PT, either before or after surgery, can make a strong negative impact on your recovery.

Note here that not all painkillers work for all people. It has been discovered that this is genetic. There is now a DNA test available which Medicare will pay for that will determine, for example, if your body will metabolize Tramadol so fast it's already out of your system in ten minutes, thus useless. I'm one of those, just like I metabolize alcohol so fast I'm instantly giddy but my hangover has started on the way home. Also not fun.

Practice getting out of all chairs, as well as the car, by bringing your hands back as near to your torso as you can and pushing yourself up from the arms: those muscles will be needed for months so start strengthening them right away, even if you're coping with rotator cuff injuries. (My old injury actually has improved in function from this way of standing. No guarantees for y'all.) Include getting out of bed and off the toilet seat in your practicing. Tiny bathrooms also need logistical practice getting in and out with a walker. Adaptations may include sideways or backwards walking, even parking it outside and using counters and walls for support. Find out. Learning when you're in a hurry to reach the toilet means you're too late.

Since you'll be slower getting to the bathroom regardless, panti liners or more absorbent items may be in order. Their plastic seal will increase your nasty body odor. Mind your personal hygiene. Consider baby wipes. Your wastebasket will also grow odors quickly, so have a small one lined with plastic shopping bags so the contents can be regularly sealed off and tossed.

Minimize your need to move after you get home. Stock up on food items that take minimum preparation. Despite your feelings about taking care of the environment, get a good supply of paper plates and napkins to minimize dishwashing chores. Make sure your regular prescriptions are filled ahead, there's enough toilet paper, tissues, light bulbs, etc. You won't want to go to the store if you can possibly avoid it. You might stock up on cash so you can send somebody else to buy things on the latest list.

Check your wardrobe. You'll be wearing shorts for a bit, even in winter, and they'll best be baggy for easy on/off, and full of pockets for carrying little stuff while your hands are busy with the walker. A lap robe or small blanket will be a must, especially if  surgery is in the winter. But even during summer, your ice packs and inactivity will help chill you down temporarily. Sometimes too temporarily. A light sweater or sweatshirt that's easy on/off can also be handy for minor changes.

Your foot will be hard to reach for a while, so keep dressing quick and easy. If you don't already have some, get a large package of cheap ankle socks and consider slip-on shoes. Barefoot or flip flops may become the new you, at least indoors. Make sure those toenails are trimmed before surgery as you won't be doing it again for about a month. maybe more. Accept that those legs will be hairy for a while.

Make sure your bed is freshly changed and laundry done before surgery. Again, you won't want to bother for a while after. You won't be sweeping floors, vacuuming, or doing much of any housework for a bit, and only the light stuff when you start in again, so either tolerate the result or arrange help.

Your doctor will likely require you to take iron supplements to build up your blood supply before surgery. These cause constipation. So will the narcotic painkillers for afterwards. Lay in a supply of stool softeners or other favorite laxative,  and vitamin C. One of the additional and lesser known benefits of vitamin C is that when you take more than your body needs, like for healing from surgery, it excretes it. In fact, a test for what dosage is right for your nutritional needs is that when you reach too high a dosage it causes diarrhea. Increase till you reach that point and then back off. A little experimentation will determine your optimal dosage.  As a cautionary note, when it's time to decrease either iron or the narcotic, decrease the dosages of the laxatives a day ahead or so, or be wed to the throne.

Since your dressing will need changing periodically, lay in a supply of gauze pads, enough to cover an 8-10" incision. Rather than tape, find some stretchy gauze rolls to hold the pads in place. Think of it as a sleeve. They are loose enough to bend with you, can be lifted and/or shifted to examine how healing is progressing, and snug enough to stay in place as you move around. They have the added benefit of no medical adhesive for those of us who are allergic to it, or who just hate having your hairs pulled off with the tape. And you can easily tell if you've gotten an infection by seeing how red the incision area is. A little red for a while is expected. A lot, and spreading red, requires immediate attention. So, for the first weeks, does a fever, so get - and check - a thermometer.

Once you know when your surgery is scheduled, clear your schedule. For the first month after, not only don't plan on going anywhere, but actively plan not to go anywhere, other than medical appointments. You'll be surprised how quickly you lose whatever ambition you had. You'll also tend to wind up paying for whatever you do for at least two days afterwards, whether it's the increased level of PT exercises, housework, swimming once it's allowed, or a trip in the car. For the second month or so, leave anything on your schedule as optional, to be decided in the moment. Stamina will eventually return, as you slowly increase activities like walking, but you won't have any now. Plan on that.

Get that haircut, the one that makes styling all but unnecessary for a few weeks. It may be the ponytail without the split ends, or the do so short it hardly matters when the wind blows. Just because you can shampoo over the sink doesn't mean you will want to as often as necessary to keep it up to your usual standards, especially if it requires fussing with after cleaning.

Your surgeon and/or hospital will require a visit with your primary care doc plus lab tests to verify you are OK for surgery. This is usually 3 weeks out. They will also schedule your first follow-up PT sessions, and your follow-up return visits to the surgeon. If you are lucky, they will also sponsor something like a "Joint Club" where you can get detailed information on what to expect and how to prepare. Don't miss one of those appointments! A calendar with large enough spaces to write each appointment in (including address and phone) is a big help, as life will become very complicated for a while. Make sure your partner/helper is aware of any need to drive you to your appointments, or find a circle of people to commit and take turns.

Prepare ice packs. Easy and cheap DIY recipe: 2 bottles cheap dish liquid, 1 bottle isopropyl (rubbing) alcohol. Mix 2 measures soap to 1 alcohol, pour into quart zipper bags. Wrap in thin cloth like dishtowel, then set into gallon zipper bag. Set in freezer until needed. Reusable. The towel/double bag method keeps them intact despite other additions and subtractions to your freezer shelves. Make at least two so one can chill while the other is in use. You may want more. When you no longer need them, their contents can be reclaimed for dish washing: it's just soap plus alcohol, both of which clean and sanitize your dishes. However, you may be thoroughly sick of the smell long before that point, as it creeps out even from double sealed bags.

For The Hospital:

Pack light. You should be there two or three days. You will be an orthopedic patient, not a sick patient, and most likely will need shorts and shirts rather than the bare-ass gown. They will provide non-skid footwear. Do bring your cell and charger. Don't bother with a book. You won't be reading because the anesthesia and painkillers will keep you from concentrating or even staying awake long enough to get anything out of it. You likely won't watch the TV there either for the same reason. Plan on sleeping, eating, PT, changing your bed position, visits from medical staff, sleeping, traveling with assistance to the toilet and back to bed, washing your face once a day, sleeping, taking meds, practicing walking, and sleeping. Nearly all of it hurts.

Find out your PT schedule and get your pain shot or pill about 90 minutes before for maximum effect. If they offer you a menu, choose about half your usual fare, both because your appetite will drop and peristalsis is affected by the anesthesia. You don't want to get too much food backed up in your plumbing while you wait for it to work again. The first day or so, you will be holding so tight onto your walker that you won't have the third hand needed to wipe yourself, so get over any embarrassment  about receiving help to do so. No, you can't do it while sitting because they have this weird cup in there to collect all your pee for inspection and it literally gets in the way of your hand. Once your balance and leg strength return you can manage wiping yourself again.

I expect guys have it better but I haven't asked whether they ask for a shake or just stand and drip. Nor will I.

Going Home:

Make sure you get that painkiller ahead of time just as if you were going to PT. There is enough torque on that new knee that getting in/out of the car will be at least as painful. Also get a prescription to hold you a couple weeks or so, until your next doctor visit, and plan on having to show up in person at the pharmacy to get it filled.  This will be a test of your ability to get in and out of the car, and using the walker - brought from home - in real life. Good luck and try not to scream and scare the kiddies. If you can shop in a place with motorized carts, do so, as it will be a very long walk  for you otherwise. (Have you ever noticed that stores plan for you to walk past half their merchandise to reach the pharmacy in hopes that you'll buy some of it?)  Have whoever drives you there bring the cart out to you, no matter what the store policy is. Stand up into your walker, then take the step or two to the cart, and vice versa. Don't try to hop on the good leg. Not for one single step.

At Home:

Use that walker for at least the two weeks they initially want you too. It may take longer, or you may feel independent of it sooner, but don't push it. You need the healing time, where you still have to stop and think where and how you use that leg. Falls are a disaster.

Settle into your comfy chair with your feet up and use that first ice pack. You may need a thin towel between your skin and the pack. In fact, plan to need one: since lots of your nerves will have been severed, you will not be the best judge of what too cold (or later, too hot) will be. You don't want to add to the damage that's already been done to skin, muscles, and tendons when they split everything away apart from the bones so they could work on them. This will be where the most of your pain will be coming from now that the bone spurs and stuff have been removed. Think of everything as having been sprained, torn, bruised.  It doesn't need to be made worse. It can still take a year to completely heal. So test that temperature on a similar tender spot, like the other thigh.

Settle on a time schedule for your painkillers that works with the rest of your routine. You will often be too foggy to remember whether you had that last pill at 3:30 or 5:00 today, or whether that was yesterday, so keep to as much of a routine as possible. If you get one of those 4 x a day weekly pill holders, you can pre-fill it and then look under each flap to check on all your meds. Be aware your screwy new sleep schedule will try to mess it all up for you.

You will still sleep a lot for weeks, partly from the anesthesia still in your system, partly from your painkillers, partly just because you are recovering from major surgery. Don't fight it. You can sleep in your recliner, or flat in your bed. If you are a side sleeper in bed, a small pillow between the knees is recommended. I haven't found one thin enough to be comfortable, and suggest substituting a few folds of a soft lightweight (baby?) blanket for cushioning. After six weeks you might not even need that as you find comfortable positions for your legs.

Your dreams will be weirder than usual. Nightmares more vivid. Actions more vivid. You may find yourself often waking from a dream with your arm outstretched reaching for some dreamed item,  feeling it in your hand. Don't let it bother you. Things will normalize, especially as your painkiller dosages decrease. If you find yourself sleepwalking, make sure the car keys are where you can't find them!

Find little bits of time for your home PT. If I do it before bed, I am wakeful for at least an hour, so I try to do it sooner. First thing in the morning isn't for me because I'm in a hurry to get some food in me that I need before taking my painkillers. Priorities, you know. I like doing most of them on my bed, after coming out of the bathroom instead of on the way. Priorities, you know. I modify some of the exercises to fit my surroundings. There is no good place to pull the knee back into a tight bend like they have at PT unless I have the elastic band handy, but if I lay on my back, thighs vertical, letting the knee lower the rest of the leg, gravity pulls it down for me. If I get myself into a spot where I can't lift the foot up again, I can just roll over and slowly straighten the leg on the bed.

The tight bend is the hardest for me. If I'm sitting where my feet swing freely, I can use the other leg to push the exercising one back into position, especially as I'm first recovering. In fact, early in the recovery I've found a stick with loops at both ends is useful in moving the leg when I can't. My hand goes in one end loop, the other slips around the foot, and I pull, lift, or whatever it takes to get that leg where I need it, whether as part of PT or just a comfy position to rest in. I don't know where to get one of those. It helps to be married to somebody who got one when he got one of his knee replacements.

If your years with bad knees haven't already taught you to do this, learn to lift the blankets up off your legs before rolling over so they don't get caught up in them. You can't effectively or painlessly move the covers aside using the recovering leg for a long while.

Keep that lap blanket handy to your chair. You can be too warm one minute and chilly the next, and 5 minutes under the blanket overheats you again. Your ice pack will cool the whole of you down to shivering, but keep using them because for the first few weeks they are great for reducing swelling and controlling pain. After that you may find gentle heat, like from a hot shower or a gently warmed hot pack, may ease pain by loosening up those tendons, same as an athlete stretching and warming up before the run or whatever. My best results are from heat before activity, cold after.

That blanket can also keep your knee protected from the rest of your environment, things which might apply pressure as you rest them there, or the dog or cat which insists it belongs in your lap because it has missed you. For the three days you were gone. For the ten minutes since it was last there.

Reading is still more challenge than not, but improves with time. TV can be problematic as well, as you drift off mid-episode. Some recording device, like TIVO or a DVR, is helpful if you can keep others in the house from erasing what they think you've already watched just because you were physically present when it was on.

Your appetite is still likely to be suppressed while you are on the narcotics, so don't be shocked when it's two hours past lunchtime and you never noticed. I won't say it's a weight loss plan, partly because of the lessened activity and partly because once you come off the narcotics the appetite returns with a vengeance.

You will wear tight elastic socks out of the hospital to help prevent blood clots in your legs. They will tell you how many weeks you should wear them. As for me, the first time they had to come off  for something, they stayed off because 1: like everybody else I hated them and 2: I couldn't reach my feet far enough and for long enough to be able to pull them back on. This is a case of my saying, "don't try this at home." And also, "results may vary." I was very conscientious about doing my ankle flexing exercises to increase circulation and hopefully avoid any clots forming.

Energy levels will be up, down, all over the map, different than what you thought they were half an hour earlier. Bedtimes vary by the day. If you make plans, be sure you and those around you understand you may need to break them without notice, the same level of notice your body gives you. Be aware that your body will be doing odd things  for a while, like the hot/cold cycling, long after you figure that it should be all over. My surgeon explained that it is because of the anesthesia, a conglomerate of very strong chemicals needed while they take you apart and put you back together, and they don't flee the body instantly once the surgery is done.

So give yourself time. And have a help-line number handy when you have a question about whether something is to be expected and just muddle through with it or apply a certain treatment, or whether you need to seek in-person medical help because whatever it is, it's important.

I try to wean myself off the narcotics after a few weeks. The first two weeks are absolutely the worst, and you need to move around, so take whatever is offered during that time and be grateful. It makes it bearable to do something as basic as rolling over in bed, or flexing and straightening the knee, not to mention PT. Living still seems worthwhile. Then you can start to decrease dosages, space out pills, substitute a dose of anti-inflamitory for one pill. At 5 weeks - which may vary for others, or with a second knee - I was on ibuprofin, 600 mg. two or three times a day, and one 5/325 percoset around supper time. If I've been at all active, both my legs absolutely ache by that time from mid thigh to the ankle, and the one pill carries me through the evening and a night of sleep, with low enough pain levels that by morning I'm back to ibuprofin again. In fact, sleeping the night through makes such a difference that when I feel an afternoon ache coming on I preemptively head to bed for a nap so I can put off the evening percoset as long as possible.

Strategies vary as time progresses. It may help that the knees were so bad for so many years that I'm grateful for even a little improvement. Then again, every little improvement makes me impatient for the next and the next until it's over, and I have to keep reminding myself to be patient.

Or I could go take another nap.