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Amputation Left Above-Knee Amputation, 22 April 2025
- Thread starter WFD
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WFD
graduate
It's strange how well I am sleeping. According to my watch, last night I was in bed 7:15 and was awake only 0:42 of it. Normally during my recovery I am in bed 9 or 10 hours but I had a conference call with a client in China late into the night and a home PT appointment first thing this AM. I'll go to bed early tonight to make up for it.
I actually look forward to going to bed at night knowing I am going to have a decent night's sleep.
The only thing that is different from all my other surgeries is that I am now sleeping with a CPAP machine. Last February I was diagnosed with mild sleep apnea and the CPAP machine has made all the difference in the world for my sleep quality.
I wonder if TKR patients, who are in the right age group for sleep apnea, will, due to the pain and stress of the TKR, exhibit sleep problems like apnea, when they ordinarily wouldn't?
Those of you reading this, if you already had a CPAP machine when recovering from TKR surgery, did you have better sleep quality than other people report? Or if you don't use a CPAP machine, does your spouse report that during your recovery you snored badly when you normally don't? These might be interesting data points.
WFD
graduate
Day 21 - 3 weeks since second TKR revision, left knee
The infections disease doc gave me a little more information about the infection. I don't recall the exact strain of staph that the bacteria is, but it is not methicillin resistant, and the antibiotics they put me on turn out to be the exact ones for the job, which is good news.
This particular staph bacteria forms 'complex structures', by which he meant complex versions of biofilms, in which the outer layers protect the inner layers from the antibiotics. The antibiotics I have been given are designed to attack this specifically, and he is optimistic, but there is still some risk. As a result I have to continue with them to at least six weeks total. My next checkup with him is on 9/20.
I've been dealing with some nausea and light-headedness, often after I eat a meal, and I don't know whether it is the antibiotics, the few oxycodones I take (I'm tapering off) or the colace stool softener (which I decided to discontinue after today.) Time will tell.
The pain level continues to decrease and I've been able to move from two crutches to one cane. This makes me more easily mobile and so I get a little more activity in - I'm tired of sitting on my butt. Unfortunately, there is still a lot of butt-sitting in my future no matter what happens.
Despite all my aches and pains, the new knee feels really solid.
The infections disease doc gave me a little more information about the infection. I don't recall the exact strain of staph that the bacteria is, but it is not methicillin resistant, and the antibiotics they put me on turn out to be the exact ones for the job, which is good news.
This particular staph bacteria forms 'complex structures', by which he meant complex versions of biofilms, in which the outer layers protect the inner layers from the antibiotics. The antibiotics I have been given are designed to attack this specifically, and he is optimistic, but there is still some risk. As a result I have to continue with them to at least six weeks total. My next checkup with him is on 9/20.
I've been dealing with some nausea and light-headedness, often after I eat a meal, and I don't know whether it is the antibiotics, the few oxycodones I take (I'm tapering off) or the colace stool softener (which I decided to discontinue after today.) Time will tell.
The pain level continues to decrease and I've been able to move from two crutches to one cane. This makes me more easily mobile and so I get a little more activity in - I'm tired of sitting on my butt. Unfortunately, there is still a lot of butt-sitting in my future no matter what happens.
Despite all my aches and pains, the new knee feels really solid.
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Thankfully the infectious disease doctor is feeling optimistic. I am sorry to hear about the symptoms you're suffering. Hopefully as you wean from the Oxy and stool softener you notice some relief. Nausea and
light-headedness definitely bring discomfort you don't need.
Wonderful news the pain is decreasing allowing you to transition to the cane and be a little more active. I hope you get some nice breaks from sitting as the week continues. Thanks for the update!
@WFD
light-headedness definitely bring discomfort you don't need.
Wonderful news the pain is decreasing allowing you to transition to the cane and be a little more active. I hope you get some nice breaks from sitting as the week continues. Thanks for the update!
@WFD
WFD
graduate
Day 28 - 4 weeks since second TKR revision, left knee
Things continue to improve. Pain levels are consistently 1 out of 10 or so, except for the odd violent painful spasms, which don't seem to be zingers, as they can happen anywhere in my leg from my hip to my ankle. Not really a problem, just startling when they happen.
I'm even not using a cane for short distances.
I'm off the oxycodones as of early last week and stopped even taking tylenol a few days afterwards. Tylenol doesn't seem to help much anyway and it can be hard on the liver. One of the antibiotics I take carries with it a risk of liver toxicity, so I prefer to lessen the stress on my liver.
Still infusing IV antibiotics as well as taking oral antibiotics. The oral antibiotics are the source of nausea I have found. Yogurt helps a little, but all in all I can deal with it.
I measured my flexion this morning at 85° cold this morning, which is on track when compared to my past surgeries. The problem was that in the past after my open surgeries everything went sideways after 50-60 days, with decreasing RoM as the scar tissue matured. The exception was my arthroscopic LOA, which did better longer except for the whole loose-tibial-prosthetic-breaking-through-the-tibia problem.
The only real irritation right now is that my surgical leg now feels a lot longer than my other leg, like maybe 1/2 inch. I'm going to discuss this with my surgeon when I see him 9/15, and see about getting it measured and putting a wedge under my non-surgical shorter leg. It is super irritating and is making my lower back tight, as well as giving me a clumsy gait.
Things continue to improve. Pain levels are consistently 1 out of 10 or so, except for the odd violent painful spasms, which don't seem to be zingers, as they can happen anywhere in my leg from my hip to my ankle. Not really a problem, just startling when they happen.
I'm even not using a cane for short distances.
I'm off the oxycodones as of early last week and stopped even taking tylenol a few days afterwards. Tylenol doesn't seem to help much anyway and it can be hard on the liver. One of the antibiotics I take carries with it a risk of liver toxicity, so I prefer to lessen the stress on my liver.
Still infusing IV antibiotics as well as taking oral antibiotics. The oral antibiotics are the source of nausea I have found. Yogurt helps a little, but all in all I can deal with it.
I measured my flexion this morning at 85° cold this morning, which is on track when compared to my past surgeries. The problem was that in the past after my open surgeries everything went sideways after 50-60 days, with decreasing RoM as the scar tissue matured. The exception was my arthroscopic LOA, which did better longer except for the whole loose-tibial-prosthetic-breaking-through-the-tibia problem.
The only real irritation right now is that my surgical leg now feels a lot longer than my other leg, like maybe 1/2 inch. I'm going to discuss this with my surgeon when I see him 9/15, and see about getting it measured and putting a wedge under my non-surgical shorter leg. It is super irritating and is making my lower back tight, as well as giving me a clumsy gait.
The longer leg issue hopefully, and possibly, is something to do with how you are positioning your body during the recovery. I thought one of mine was about an inch longer than the other. This was partially due to a longer period of swelling, and partially due to scoliosis (following a back injury when young) which means I slightly rotate my pelvic girdle. When I align everything precisely, it’s the same length as the other one! But mine doesn’t cause issues when walking fortunately.
Good to see that everything else is now going well for you videoing the problems that you have faced. Keep us posted.
Good to see that everything else is now going well for you videoing the problems that you have faced. Keep us posted.
WFD
graduate
I confess I am baffled - what word did you mean for 'videoing'?
WFD
graduate
Day 35 - 5 weeks since second revision, left TKR
Not too much different to report. Feeling a little better than last week, though I did set myself back a little over the weekend. We had friends over for a cookout on Saturday. I split firewood and set up the cooking fire, with lots of walking back and forth to the house, then sat with my foot on the ground and my knee bent for four or five hours. I didn't even have the benefit of drinking any alcohol since it is verboten with my antibiotics. I'm still recovering but I'm only a little stiff.
Next week I get the bandage off and the following week I get the PICC line removed. There will still be two more weeks of oral antibiotics and then hopefully I am done with that stuff. What a pain. My stomach can't wait for the antibiotics to be done. Now I think I have a little appreciation for people that can't take NSAIDs (which rarely bother me.)
When I get the bandage off next week I am going to try the exercise bike again.
Not too much different to report. Feeling a little better than last week, though I did set myself back a little over the weekend. We had friends over for a cookout on Saturday. I split firewood and set up the cooking fire, with lots of walking back and forth to the house, then sat with my foot on the ground and my knee bent for four or five hours. I didn't even have the benefit of drinking any alcohol since it is verboten with my antibiotics. I'm still recovering but I'm only a little stiff.
Next week I get the bandage off and the following week I get the PICC line removed. There will still be two more weeks of oral antibiotics and then hopefully I am done with that stuff. What a pain. My stomach can't wait for the antibiotics to be done. Now I think I have a little appreciation for people that can't take NSAIDs (which rarely bother me.)
When I get the bandage off next week I am going to try the exercise bike again.
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Day 42 week 6 after 2nd revision, left knee -
Things are going OK but progress has stalled. My flexion is still at 90°. That may be because this past weekend my wife was away and I had to take care of her chickens, our two dogs, etc., plus having overdone it on the previous weekend. It may also be because we are approaching the best I've achieved after any surgery, and I may be approaching the limit. My surgeon warned me that the joint capsule was stiff and not in good shape as a result of all the scar tissue and surgeries. He had said that at the end of the op, prior to closing the joint capsule, I had "very good RoM" but as soon as he closed the joint capsule the RoM was then sharply limited due to this stiffness. Hopefully over time this will improve.
This Friday I get the bandages off my knee, which will be wonderful and may give me another 5°. Friday is also the end of the IV antibiotics but due to scheduling with the visiting nurse I can't get the PICC line removed until Monday. I may try to see if I can get it removed while I am at the hospital Friday.
Also Friday I finish up the oral antibiotic Rifampin (which I am looking forward to even more, because of the drug's side effects.) I do then have to go on two weeks of oral Keflex, which I hope will be less unpleasant.
Once both the bandage is off and the PICC line is out and the port is healed, I am going to start up my workouts again - upper body weightlifting and cardio on my paddling ergometer. I'm also going to add the stationary bike at zero resistance to my knee exercises, if it works out this time.
Here in northern MA on the NH line we received more than 5" of rain yesterday and there is flooding in some places. Just an amazing amount of rain.
Things are going OK but progress has stalled. My flexion is still at 90°. That may be because this past weekend my wife was away and I had to take care of her chickens, our two dogs, etc., plus having overdone it on the previous weekend. It may also be because we are approaching the best I've achieved after any surgery, and I may be approaching the limit. My surgeon warned me that the joint capsule was stiff and not in good shape as a result of all the scar tissue and surgeries. He had said that at the end of the op, prior to closing the joint capsule, I had "very good RoM" but as soon as he closed the joint capsule the RoM was then sharply limited due to this stiffness. Hopefully over time this will improve.
This Friday I get the bandages off my knee, which will be wonderful and may give me another 5°. Friday is also the end of the IV antibiotics but due to scheduling with the visiting nurse I can't get the PICC line removed until Monday. I may try to see if I can get it removed while I am at the hospital Friday.
Also Friday I finish up the oral antibiotic Rifampin (which I am looking forward to even more, because of the drug's side effects.) I do then have to go on two weeks of oral Keflex, which I hope will be less unpleasant.
Once both the bandage is off and the PICC line is out and the port is healed, I am going to start up my workouts again - upper body weightlifting and cardio on my paddling ergometer. I'm also going to add the stationary bike at zero resistance to my knee exercises, if it works out this time.
Here in northern MA on the NH line we received more than 5" of rain yesterday and there is flooding in some places. Just an amazing amount of rain.
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WFD
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Day 56 week 8 after 2nd revision, left knee -
The PICC line is out, the bandage is off, and I'm on my second week of workouts, having restarted them after getting the line out and the bandage off.
I'm also using the exercise bike at zero resistance, increasing the pedaling range of motion on my left leg as the knee feels better (I have a pedal swing I installed that allows me to adjust the range of motion of the left pedal.)
I may be overdoing it a little on the exercise bike as my knee is getting stiff and I'm not increasing RoM any more. I think I'll set the pedal adjustment back one setting and see if that lets the knee recover. I've also been doing a lot of driving as my Dad has been in the hospital and it's an hour drive each way.
One more week of oral antibiotics and then I'm done with those.
Otherwise, I'm into the slow-motion portion of the recovery, so I think I will switch to monthly updates.
The PICC line is out, the bandage is off, and I'm on my second week of workouts, having restarted them after getting the line out and the bandage off.
I'm also using the exercise bike at zero resistance, increasing the pedaling range of motion on my left leg as the knee feels better (I have a pedal swing I installed that allows me to adjust the range of motion of the left pedal.)
I may be overdoing it a little on the exercise bike as my knee is getting stiff and I'm not increasing RoM any more. I think I'll set the pedal adjustment back one setting and see if that lets the knee recover. I've also been doing a lot of driving as my Dad has been in the hospital and it's an hour drive each way.
One more week of oral antibiotics and then I'm done with those.
Otherwise, I'm into the slow-motion portion of the recovery, so I think I will switch to monthly updates.
I pray for your Dad's recovery and yours, too!
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WFD
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Three months after second revision, left knee -
My RoM is not improving, stuck at around 90°, give or take. It feels as if the scar tissue is maturing and getting stiff and hard to stretch, This is pretty much what has happened after all my other surgeries - my knee actually does seem to follow the oft-stated rule that what RoM you have at 12 weeks is the RoM you'll be stuck with. It may not be true of other people but it does seem true of me.
I wouldn't be surprised if when/if the swelling goes down, I will gain a few more degrees.
So the RoM progression is not great, but that is what my surgeon and I expected, given my track record and what my knee has gone through, so I can't say I am disappointed.
Other than a lack of RoM, my knee still feels strong and sturdy and although I have swelling and stiffness, I have little or no pain in the knee. I have been increasing my activity level gradually. Generally I have been putting in 4-5,000 steps per day but yesterday I did 7,200 because I worked outside, draining hoses and putting them away. We have a large property and one hose is 200' and the other 150'. I drag them down a steep hill to let them drain and then drag them up again as I roll them up. Afterwards my knee was not in pain and did not swell more than it usually does, but the rest of my left leg and hip had all sorts of little pains and tweaks. More than three years of being semi-sedentary has taken its toll. The arthritis and (maybe) bursitis in my left hip, normally both quiescent, have come back.
It's going to be a long road to build the strength and toughness back into my left leg but I'll get there. As long as my knee is good, I know how to build strength. I will be waiting a while though before starting the real strengthening work on the leg, maybe to the six month point.
I also figured out where and when I caught the infection. I downloaded all my lab results from my hospital network's patient portal (those results that they had, it's a crappy system), and plotted the markers of inflammation (white blood cell count, CRP and ESR) on a graph marked with when all my various surgeries took place, and found that I caught the infection at the time of my first revision, and it went unnoticed for more than two years, even though a post-op blood test clearly showed it. Because the infection was unnoticed, I had a poor recovery and then went through another surgery, arthroscopic this time. Again, the infection went unnoticed, and I had a miserable recovery and ultimately a loose tibial prosthethetic that nearly broke my leg. The infection was finally discovered during pre-op testing for my most recent revision, so I then received the proper treatment and I have now had a solid recovery.
I am still upset that because someone didn't bother to read and act upon lab results that clearly showed an infection in progress, I may have gone through two unnecessary additional surgeries and two unnecessary additional years of misery.
From now on, I am getting copies of all lab work, done for any reason, and reviewing it carefully. You cannot trust that doctors and PAs will, given the time pressures that are on them, always have the time and energy to always cover every detail.
Meanwhile, my PCP was treating me for a case of anemia, of unknown cause. Iron and B12 supplements were not fixing it and she was about to send me to a specialist when I had a thought. I went back to the patient portal and went through the lab work for all the markers of anemia (red blood cell count, total hemoglobin, and hematocrit) and plotted those on a graph. Sure enough, the anemia started at the time of my first revision, exactly when I got the infection. It's common to see a drop in these tests after major surgery, but a healthy person recovers quickly afterwards and I never did. Infections are a well known cause of anemia.
Once the infection was killed, my anemia resolved quickly, and I am feeling much better, with noticeably more energy.
If there is one piece of advice I can offer to people who have had slow recoveries like me, it is get copies of all your lab work and review them in detail. If you don't understand them, get a doctor, nurse, or PA to explain them to you. All the lab results I've ever seen include the permissible upper and lower limits for each test, and often highlight any result that is out of range, so it is not hard to see which results you should ask questions about. Don't rest until you have received satisfactory answers.
This post may sound a little negative, but on the whole I am upbeat. The pain is gone, and I am on a path back towards a normal life, and for the first time am confident I will get there. There are things I will never be able to do again, but getting older is like that.
My RoM is not improving, stuck at around 90°, give or take. It feels as if the scar tissue is maturing and getting stiff and hard to stretch, This is pretty much what has happened after all my other surgeries - my knee actually does seem to follow the oft-stated rule that what RoM you have at 12 weeks is the RoM you'll be stuck with. It may not be true of other people but it does seem true of me.
I wouldn't be surprised if when/if the swelling goes down, I will gain a few more degrees.
So the RoM progression is not great, but that is what my surgeon and I expected, given my track record and what my knee has gone through, so I can't say I am disappointed.
Other than a lack of RoM, my knee still feels strong and sturdy and although I have swelling and stiffness, I have little or no pain in the knee. I have been increasing my activity level gradually. Generally I have been putting in 4-5,000 steps per day but yesterday I did 7,200 because I worked outside, draining hoses and putting them away. We have a large property and one hose is 200' and the other 150'. I drag them down a steep hill to let them drain and then drag them up again as I roll them up. Afterwards my knee was not in pain and did not swell more than it usually does, but the rest of my left leg and hip had all sorts of little pains and tweaks. More than three years of being semi-sedentary has taken its toll. The arthritis and (maybe) bursitis in my left hip, normally both quiescent, have come back.
It's going to be a long road to build the strength and toughness back into my left leg but I'll get there. As long as my knee is good, I know how to build strength. I will be waiting a while though before starting the real strengthening work on the leg, maybe to the six month point.
I also figured out where and when I caught the infection. I downloaded all my lab results from my hospital network's patient portal (those results that they had, it's a crappy system), and plotted the markers of inflammation (white blood cell count, CRP and ESR) on a graph marked with when all my various surgeries took place, and found that I caught the infection at the time of my first revision, and it went unnoticed for more than two years, even though a post-op blood test clearly showed it. Because the infection was unnoticed, I had a poor recovery and then went through another surgery, arthroscopic this time. Again, the infection went unnoticed, and I had a miserable recovery and ultimately a loose tibial prosthethetic that nearly broke my leg. The infection was finally discovered during pre-op testing for my most recent revision, so I then received the proper treatment and I have now had a solid recovery.
I am still upset that because someone didn't bother to read and act upon lab results that clearly showed an infection in progress, I may have gone through two unnecessary additional surgeries and two unnecessary additional years of misery.
From now on, I am getting copies of all lab work, done for any reason, and reviewing it carefully. You cannot trust that doctors and PAs will, given the time pressures that are on them, always have the time and energy to always cover every detail.
Meanwhile, my PCP was treating me for a case of anemia, of unknown cause. Iron and B12 supplements were not fixing it and she was about to send me to a specialist when I had a thought. I went back to the patient portal and went through the lab work for all the markers of anemia (red blood cell count, total hemoglobin, and hematocrit) and plotted those on a graph. Sure enough, the anemia started at the time of my first revision, exactly when I got the infection. It's common to see a drop in these tests after major surgery, but a healthy person recovers quickly afterwards and I never did. Infections are a well known cause of anemia.
Once the infection was killed, my anemia resolved quickly, and I am feeling much better, with noticeably more energy.
If there is one piece of advice I can offer to people who have had slow recoveries like me, it is get copies of all your lab work and review them in detail. If you don't understand them, get a doctor, nurse, or PA to explain them to you. All the lab results I've ever seen include the permissible upper and lower limits for each test, and often highlight any result that is out of range, so it is not hard to see which results you should ask questions about. Don't rest until you have received satisfactory answers.
This post may sound a little negative, but on the whole I am upbeat. The pain is gone, and I am on a path back towards a normal life, and for the first time am confident I will get there. There are things I will never be able to do again, but getting older is like that.
