TKR The long and winding road - round 2

[Rather]

So last night was one step forward and many steps back. I’ve been sleeping on the sofa which doesn’t allow for much movement of arms or legs. So I decided to make the trek upstairs to the guest room and try the bed. I happily awarded 1000 husband points for all of the work that my DH has been doing, carting the ice machine and my CPAP back and forth between the recliner and the sofa and then last night upstairs to the bedroom.

I was so excited to get into the bed and was looking forward to a good sleep. Didn’t happen. It started with zingers that went off like the finale at a fireworks celebration. They were everywhere at once and went on for quite awhile. Just as that started to subside, deep, sharp pains started in my inner thigh and my ankle was throbbing. And so the night went. Just as one set of discomfort and pain subsided, another jumped up to take its place. The bed proved so much firmer than the sofa and my back began to ache.

The constant ricocheting pains were not being handled by my 1 hydrocodone. I took another and 2 when it came time for my next dose. I added gel packs behind my knee and on my thigh. I couldn’t seem to sleep more than 30 minutes at a time. By a mile, last night was the worse night I have had since the surgery.

Today I’m exhausted- totally exhausted - wiped out completely. Most of the pains have subsided as if they were triggered by night and ran away to hide in the daylight. I have no idea why everything started hurting so much last night. If I try to stay positive, I could chalk it up to making progress with healing. But right now, I’m so tired and dreading another night of sleepless pain.

 

[DLR]

So sorry to hear... I am sleeping in my bed this past week for the first time at 4½ weeks ....patience... somehow night time wakes all the knee goblins !!

 

[Celle]

I'm sorry you had such a bad night. It may, or may not, have been related to moving to the bed to sleep. It's still only 8 days since your surgery, so all your tissues are still very sensitive. It will take a while for them all to settle down.

Often, pain at night is caused by one of two things - under-medication or over-activity. Since you took your pain meds sensibly, do you think you had a bit more activity yesterday? You should still be spending almost all of your time resting, icing and elevating, with only a little bit of walking around the house for exercise.

Sleep disturbance is part of this recovery I'm afraid, and it will probably be quite a while before youcan sleep through the night.
Sleep deprivation is pretty much inevitable - but what causes it?

Until your sleep pattern returns to normal, make up for lost night-time sleep by taking frequent naps in the daytime. Sleep where you can, when you can, and how you can. Don't make the mistake of trying to stay awake during the daytime, in the hopes that you'll sleep better at night. It just doesn't work like that.

 

[Rather]

It has been a few days since I posted. I have continued to have rough nights with pains that I don't experience during the day. Some are crescendos of zingers - not at all pleasant - but the worst ones are a grand variety of pains in my thigh - inner and outer, as well as a growing problem with my piriformis muscle that I've had previously. I'm sitting on a tennis ball when I can and hoping that I can get this under control.

Today was my first PT appointment and he started with the spiel about how I needed to start strengthening my quads by using weights. I told him no and explained that I was doing my recovery according to Bonesmart guidelines - lots of elevation and icing, avoiding pain, but accepting some discomfort, and not chasing numbers. He got very huffy, said I would be putting my recovery at risk, and then said the truth - that insurance was willing to pay for 6 weeks of therapy, but they expected to see certain thresholds of progress or they would refuse to pay. And there it was for all to see - ROM targets to ensure that he got paid for 6 weeks of PT.

I told him that I was perfectly willing to forego all PT if he couldn't work in the way I wanted to work. He said that he would give me a few pointers and demonstrate a couple of exercises and then I could decide whether or not to make another appointment. At that point, he measured my extension at 5 and my ROM at 106. He kept saying how surprising this was since this was my first PT visit outside of the hospital. Finally, he acknowledged that perhaps my method, the Bonesmart way, was working.

I will do more PT, but not with him. I am so grateful for all that I have learned from everyone on this forum. Without that prior knowledge, I would have been doing weighted leg presses today and I am certain that my poor knee would be very angry.

 

[Irish471]

@Rather , good God, that PT sounds horrid! I would say run as fast as you can, but well...you know I have been going to physical therapy for almost 7 weeks and have never done weights. Is there another place you can go to?

The nights and the resulting sleep deprivation are the worst for the first few weeks. My husband lovingly refers to me as the Pillow Queen. I sleep on an incline due to reflux issues and I have a huge body pillow that wraps around me. Add to that the Lounge Doctor and I have my own little pillow island oasis. Even with that, I struggled to sleep. For some reason, the mind just won't shut off and then you start to zero in on all the pains. My theory is that we have a lot more distraction during the day so we notice the pain a lot more at night. I hope it gets better for you! I take Tylenol throughout the day and have only 14 more oxycodone pills left (yes, I am counting them and rationing them!), so I decided to switch to Tylenol PM to help me sleep. It helps a little.

Regarding the ice, there are mixed opinions about that. My OS said to ice around the clock for the first 4 days at home, then switch to 3-4 times per day. Some people do it a lot more than that. I say ice as much as you want for your own comfort. Here's to you having a better night

 

[Jamie]

He got very huffy, said I would be putting my recovery at risk, and then said the truth - that insurance was willing to pay for 6 weeks of therapy, but they expected to see certain thresholds of progress or they would refuse to pay. And there it was for all to see - ROM targets to ensure that he got paid for 6 weeks of PT.

I'm going to assume that Medicare is your primary insurance, given your age. The guy was flat out lying to you if that's the case because Medicare does not have "goals" for therapy. Years ago you used to hear that inpatient rehab patients were released when they had reached a "plateau" where they were not improving. But that has been challenged and simply reaching a plateau is not a reason for discharge from therapy. If your doctor says you need therapy, you can receive it up to the limits of your particular insurance policy.

Even if you don't have Medicare as your primary and you have an Advantage plan or other insurance, the same rules apply. No one is going to kick you off a therapy program because you don't meet someone's arbitrary goal for progress.

 

[winemama]

I'm going to assume that Medicare is your primary insurance, given your age. The guy was flat out lying to you if that's the case because Medicare does not have "goals" for therapy. Years ago you used to hear that inpatient rehab patients were released when they had reached a "plateau" where they were not improving. But that has been challenged and simply reaching a plateau is not a reason for discharge from therapy. If your doctor says you need therapy, you can receive it up to the limits of your particular insurance policy.

Even if you don't have Medicare as your primary and you have an Advantage plan or other insurance, the same rules apply. No one is going to kick you off a therapy program because you don't meet someone's arbitrary goal for progress.

My wife is a retired OT , here in the US, keeping your quotes up is what insurance companies look for you to keep your job. It is terrible. Your PT knows this, if he has to many people not make goals, it doesn’t look good at his review, also PT centers, hospitals ect, don’t get paid

 

[Jamie]

Your wife may have experienced these quotas, but things have changed in the past couple of years with some legal actions. It is my understanding that the past "plateaus" are not permitted as a reason to kick someone out of therapy.

 

[winemama]

Your wife may have experienced these quotas, but things have changed in the past couple of years with some legal actions. It is my understanding that the past "plateaus" are not permitted as a reason to kick someone out of therapy.

It is not plateaus, now it called productivity, every minute of PT must be accounted for, goals are set in the beginning. You can be asked to leave if you refuse PT or OT 3 times

 

[Jamie]

@winemama....This is off topic for Rather's recovery thread and it's not the place to have a lengthy discussion about therapy policy at a particular rehab facility. If you wish to discuss this issue further, please start a thread in the Social Room to discuss therapy policies that you personally have experienced.

The bottom line for Rather is that she has choices in therapy and they include going to a different facility and/or being part of the process to set those goals for her recovery. Insurance companies do not have established points in recovery where they will discontinue payment if they are not reached by a certain date. This therapist was threatening her needlessly and it was a smart move for her to find a different facility.

 

[winemama]

I so apologize,

 

[Rather]

Wow- I need to make several replies
@Irish471 I have been thinking about investing in a body pillow and am encouraged by your report. My sleep is segments of 1-1.5 hours at a time and then I have to change something - legs up on lounge doctor or down; feet pointed inwards or outward or straight on; good leg bent or straight; plus a couple of experiments trying to move on one side or the other, propping new knee/leg with pillows. I wake from discomfort more than pain and am so groggy and desperate to get back to sleep. I sleep with a CPAP device so I am also "hosed up" on my head and my knee(w/the ice machine). Throw in a couple of blankets, pillows, the lounge doctor, and a heating pad that I put on my upper thigh and you have a recipe for nighttime chaos. I started reducing time on the ice machine today as well as extending the time between doses of hydrocodone. I think if I eliminated the night icing at least changing positions in the bed would be much easier.

@Jamie I'm on my husband's Medicare but I'm still working FT and my insurance is a nice PPO plan through my employer. Medicare for me would only cover hospitalization. I think the PT was unhappy that I was challenging his professional authority and I totally understand that. I run an IT organization at a college and I am continually amazed and annoyed at folks who want me to buy a piece of software because their aunt/neighbor/colleague at another school says it would solve all of our problems. But my attitude is to listen first and try to understand why they have arrived at this solution and then to work with them to solve the problem. And some of the time, I learn about a new product or service in the process and change my approach going forward. It has to be a partnership and professionals who are secure enough in their own knowledge to keep learning don't get huffy thinking that their credentials and training are being questioned. I am hoping to find another PT who is a bit more emotionally mature.

@winemama Thanks for sharing your experience. Too often I think that many of us find insurance not on the same page with enabling a productive working partnership among patient, doctors and other caregivers focused on the patient. Healthcare costs are a big issue in this country and I understand the pressure to be more efficient - we have the same issues in higher education.

 

[Rather]

Now for a quick update and self-congratulation. Every night I set a goal for the next day - only 1. These aren't huge goals. One was making 3 trips up and down the stairs that day. Today's goal was to take a shower by myself - no help. I graduated from the walker to a cane in each hand a couple of days ago. So about mid-morning, I climbed the stairs to our bedroom/bathroom and told my husband that he could sit on the bed, but he was not to help me unless I asked. I managed to get fresh clothes and put them in the bathroom, remove my old clothing and get them into the hamper, get a fresh towel and washcloth and put them where I could reach them in the shower, move the shower bench into the shower, walk into the shower with one cane, sit down, shut the shower door, and bathe. And then I was able to get out, dry off, remove the chair so that I would sit on it to dry my hair, put on my clean clothes and walk back downstairs.

I did it - all by myself. I think I was as excited today as I was many, many years ago when I rode my bike without training wheels for the first time. I needed a sense of accomplishment about now and I got one. Yea me!

 

[winemama]

Now for a quick update and self-congratulation. Every night I set a goal for the next day - only 1. These aren't huge goals. One was making 3 trips up and down the stairs that day. Today's goal was to take a shower by myself - no help. I graduated from the walker to a cane in each hand a couple of days ago. So about mid-morning, I climbed the stairs to our bedroom/bathroom and told my husband that he could sit on the bed, but he was not to help me unless I asked. I managed to get fresh clothes and put them in the bathroom, remove my old clothing and get them into the hamper, get a fresh towel and washcloth and put them where I could reach them in the shower, move the shower bench into the shower, walk into the shower with one cane, sit down, shut the shower door, and bathe. And then I was able to get out, dry off, remove the chair so that I would sit on it to dry my hair, put on my clean clothes and walk back downstairs.

I did it - all by myself. I think I was as excited today as I was many, many years ago when I rode my bike without training wheels for the first time. I needed a sense of accomplishment about now and I got one. Yea me!

I felt the same way when I took a shower myself, so proud. Then I needed a 4 hour nap

 

[Jamie]

Congratulations on your shower!! Only those of us who have experienced the "joys" of a knee replacement can relate to your feeling of accomplishment. For me, naps after showers were required for quite some time. You don't realize how much effort that can be when you're recovering from major surgery.

 

[sistersinhim]

Oh yes, I remember that first shower that was unassisted! Being alone almost all the time, I had to schedule my showers when people came to visit. Not a nice way to be a host. Of course, I wasn't a host. Couldn't be and when they asked what help I needed, I would say a shower. The last time I did like you and just had a girl friend within hearing just in case I needed help. I didn't and that proved to me that I could now attend to my personal things all by myself. What a huge joy that little thing was, as I'm sure yours was, too!

 

[Rather]

Yesterday was my 2-week kneeversary. So where am I? Walking is getting easier. I graduated from the walker to two canes a few days ago. I am slowly adapting to a single cane. This is a huge milestone for me because it reduces some of the complexity in this recovery. I have elected to do lots of rest, elevation and icing - my leg is cold and elevated about 22 hours a day. My swelling has reduced considerably and I am walking slightly longer distances each day - just to the end of the driveway and a few steps more before returning.

But like so many folks here, I despair of sleeping ever getting any better. Last night was the best I have had and my sleep app notes that while I was in bed for almost 7 hours, I only managed 4.5 hours of sleep. I'm tired of feeling tired. At night, my issue is more discomfort than pain. Eliminate the Lounge Doctor and my leg feels a strong aching pull behind my knee. Use the LD and my thighs hurt. Stay on my back all night and my lower back aches and my leg feels like a concrete log. I've tried to turn on my side, but haven't been able to stand that for more than 15-20 minutes before pain emerges. I can honestly say that comfort is nowhere to be found at night.

I am icing at night - tried not doing that and was overwhelmed with a variety of pains and aches. Trying to manage the icing hose and my CPAP hose is a nocturnal dance that is both difficult and exasperating. I've also had instances of restless legs and those weird body jerks that happen when you are about to fall asleep. At least I've been able to tame all of that by putting a heating pad on my upper thigh - one more connection with a cord or hose. I'm staying in the guest room - can't even imagine trying to share a bed with all of the craziness each night. But the night is also when I cry and wonder if I will ever sleep well again.

Tomorrow is a PT appointment with a new therapist. I am hopeful that he/she will have some advice about the restless legs and thigh aches.

All in all, I'm surviving. And I am so, so grateful for all of the experiences that everyone shares. There is much comfort in knowing that you are not alone in going through this. And reading of those who are 2-3-4-5 months ahead of me convinces me again each day that things will get better...and I may even sleep at some point!

 

[Rather]

Up and down. Back and forth. Every time I think something is getting a bit better, something else gets worse or emerges as a new issue. Sleep continues to be elusive. Or at least useful sleep. I sleep for 1-2 hours and wake up uncomfortable and groggy. I finally went back to the recliner because the bed was not working for me. But I haven’t managed to sleep more than 3 hours without having to get up and walk around to relieve stiffness in my leg. My latest nemesis is the compression stocking. The top creates a deep ridge in my upper calf that is seriously painful. I left it off for a couple of days and watched my lower leg swell in size no matter how long I elevated and iced. I’m seriously considering ditching the stocking although the OS wants me to wear them for 2 more weeks.

 

[Benay]

Glad I never had the stockings. Think everything is better if you sleep ok. I've taken to sleeping in another room with my cat. Less disturbance. If I sleep the next day is more manageable. Looking forward to better days, they're coming! And I think my horrible restless thrashing legs are a thing of the past.

 

[lisabl]

@Rather I fully can relate to your nightime antics

Your setup is similar to mine, but thankfully I do not need a CPAP machine. I went back to sleeping in spare queen bed last night and probably got the best sleep so far (for last 12 days I have slept on a recliner to keep me moving less at night, as I am normally a side sleeper and no way could sleep on side with operated leg). To start I have a thinish memory foam mattress on top of my old sprung one - this gives about 4-5 extra inches of height to help me get in and out of bed more easily in the night. The foam also makes the bed softer and means I can sleep on my back without back ache. On this I have a lounge doctor to raise one or two legs. Being organised by my head pillow is a sleep mask, tablet and glasses (in case I can't get back to sleep and so read this forum, and I have a hot drink in a travel vacuum mug that stays hot for 8 hrs if I need more than water (kept in a Chill bottle- nice and cold). So get in bed, plug in cryo cuff, and heat pad on thigh, put headphones on to listen to my meditation/hypnotherapy talking book for reducing knee pain (also cuts out noise of cryocuff), snuggle into fleece blanket and pull lightweight sleeping bag (unzipped) over everything, and generally can get to sleep. 2hrs later wake up for toilet break, unplug, walk to bathroom and on return (leg now had some circulation), repeat whole process again. This happens 2-3 times during the night, and I am managing around 6 1/2hrs sleep a night. Depending on how many long breaks I have in night, I might be up to start the day anytime from 6:30 to 8:00am. I have decided as soon as I struggle in the bed to sleep I will move back to the recliner in the living room.

You are not alone. I am also looking forward to my first solo shower later today.