Sunday, March 1, 2015

The Endless Days and Nights of Knee Rehab

PAIN. That is the operative word for total knee replacement surgery. I erroneously thought that nothing could be worse than my experience with colon cancer, which required a 3 week hospitalization, a surgical resection and six months of severe chemotherapy. I was wrong. Agonizing, continuous pain supplants all else. I was on morphine for two weeks after knee surgery and that barely held the pain in check. Oxycontin and Tylenol replaced my morphine. 
This was the bike I pedaled daily for twenty minutes at a fairly vigorous pace. I did other exercises as well. The only way to lessen the pain besides taking medications is by exercising. Because I was otherwise in good shape, my physical therapy team thought I was game for any extreme form of exercise. Jim and I eventually had to take a stand. Thus, although we recognized that moderate exercises could help me, more than a moderate amount could and would hurt me. So we started to force them to dial it back a notch. My surgeon seconded this idea as he does not like overly aggressive physical therapy either. The very weird thing going on in the PT gym though is more than half of the people are barely doing anything because they can't. I watched one of these patients take about 15 minutes to walk through the doorway of the gym. She was attached by a leash to the therapist. This walk stressed the patient to the utmost, taking everything she had. By contrast, I looked like an Olympic contender, even though I was the kid picked last for any team in grade school. Quite frankly about half of the patients enrolled in PT do absolutely nothing but sit there in their wheelchairs. Do I think they are faking? No. This is because when we saw Jim's Mom hit "the end of the trail", she had the same look about her that these patients did.

This blog entry is an overview of the things we did right and the mistakes we made regarding my knee replacement surgery. I am on Medicare so I also had to play within Medicare's rules.

The biggest thing we did right is start fresh with the best surgeon we could find. I had no confidence in the orthopedic surgeon I'd been using. I didn't like the hospital where he did his surgery either. I'd had my cancer surgery done there but the only thing I liked was my cancer surgeon who left that hospital shortly after my discharge. 

Felix (Jim's alias) did the hunting for the new surgeon and found a terrific one on staff at the Cleveland Clinic. The clincher was that he was also a glass artist. This told me that he did beautiful work with his hands and was compelled to work with his hands. These are desirable character traits in a surgeon.  He did a beautiful job on my knee.

Fortunately, my new surgeon did the surgery out of a hospital that Cleveland Clinic has made into a niche hospital. It does nothing but these orthopedic surgeries. The famous athletes get their surgery done there as well.

The hygiene and sterility standards for this surgery were extreme. The night before I had to scrub myself down in the shower. Then Jim had to scrub me down with these huge, specially treated surgery cloths. He had to use another set of towels on me the next morning before we left for the hospital. These cloths were so caustic that my skin broke out immediately and is now, more than three weeks later, still bearing the scabs from my breakout. We also had to treat my nostrils by using these giant Qtips filled with ointment for days before the surgery. I had to drink Ensure for days before the surgery too. All in all I felt like Rocky getting ready for his big fight. We asked about all of this preparation and were told the biggest risk in this surgery was infection. Thus, the standards for hygiene were the highest among the Cleveland Clinic hospitals.

As a general rule, Medicare typically will allow three days in the hospital and 5 days in a rehab facility followed by home health care by a nurse and PT. It pays for all of this. In my case, it let me have three weeks of treatment at the rehab facility, which is triple its usual allotment. I believe it was my surgical complications which made this possible. 

My first surgical complication was noticed immediately after surgery. This was that my toes had stopped going up. They would still go down but that's all they would do. We are still trying to solve this problem. There was an anti cholesterol drug I was taking which might be the culprit. I've been off that drug for a month now but my toes remain the same.

The second surgical complication is that my wound had a tendency to burst open with movement. It would leave several layers of blood soaked bandages in its wake. The nurses would then have to completely dress my wound and bandage me anew. The nurses did this once in the gym itself after my PT session had caused yet another rupture. As my wound kept bursting open, new blood tests were done on me. The numbers which came back on those tests indicated that I could be moving into infection. From that point until discharge, every slight change of condition in me was noted as they had to be ready for an infection if I moved into one. One set of blood tests alone took half an hour to draw the blood because they used both arms. Fortunately, I never did move into an infection. Did all this bandaging and blood testing mean the PTs wanted to dial my exercises back a notch? Of course not! They looked at Jim and me as if we were colossal morons whenever we expressed concern about how strenuous the exercise was.

Medicare's chief objective is that the patient not make a U-turn in the surgical procedure so that the patient returns to the hospital because of further complications. It wants the patient to start at the hospital, then go to rehab and then home to home health care. If the patient makes a U-turn, say back into Cleveland Clinic, Medicare has failed to meet its objective. So enlarging the rehab stay so as to avoid a hospitalization made sense to Medicare.

The above were the biggest problems we had but all in all we did more right than we did wrong. The biggest thing you can do wrong in this kind of major surgical setting is turn off your brain. We were thrown into pools of people and services at every stop along the way and we had to be able to interpret the choices we were given and then adequately respond to the people asking us to make a decision. Here are the major mistakes we made:

1) We trusted the social case workers to our peril. There were about three of them, working all different shifts. They were bound and determined that we were going to take this truck-ambulance from the hospital to rehab. We subsequently discovered that they knew the outfit they recommended, Daniel Martens, ran many hours behind and did a poor job. It was four hours late picking me up and I had missed all my pain meds. The ambulance worker forgot to take my paper work to rehab so they had no idea what to give me as drugs. I was in so much pain that I ended up screaming and crying for the next 24 hours. The net result is that we are unwilling to work with a hospital social case worker again. Hereafter, we will handle all of our own arrangements. I have already written a complaint in full about this event which we will file with the (unpaid) bill.  Here is a link to a main page at the Cleveland Clinic website which glowingly reports all the marvelous things these case social workers will do for you, which goes under the umbrella term care management. Don't believe a word of it!

2) It took us awhile to catch on but it appears that for this type of surgery that the professionals who work these cases, do not agree about much. The PTs see everything from an exercise perspective whereas the doctor and nurses see medical data as paramount, i.e. your cell count, your vitals, your temperature, your risk of infection. As for exercise, the nurses and doctor believe you should be moving as much as is feasible each and every day but that is the extent of their belief. If you are walking the hall with your walker, they are satisfied. 

Get used to hearing different versions of what is happening to you from every professional who is working on your case. At some point, you will have to reach your own decision about which person's advice to follow. We generally follow the physician's advice because it tends to look at the big picture overall about the recovery instead of at immediate short term gains.

3) There are mind games going on in institutions between and among employees and you can get caught in the middle. To my astonishment, an LPN announced to me, at the time I was supposed to take my next muscle relaxant, that she personally did not believe it was a good idea for me to take the pill then. She believed it and the oxycontin were not good to mix. I said to her, "But the problem is that you don't have the discretion to make that kind of decision. You will need to call my doctor if you have decided to second guess his medical orders as to my medication." She went and got my pills and gave them to me. I don't know if the average person would realize that the LPN was exceeding her authority in this scenario. They might not and she would get away with making decisions that are not hers to make. I knew there was zero chance that the LPN was going to call my surgeon and tell him she thought he was wrong in prescribing the muscle relaxant for me.

This mind game aspect I could write about for weeks on end because there is a lot of it. A woman showed up in my room from the front office (name tag said so). She said I had to take a word repeat test with her. I asked her why I needed this test. After all, I was not there for any purpose related to a decrease of my brain power. She said she couldn't tell me why she was doing this and started giving me this test. I repeated one word and she said I got it wrong. I told her that I'd already warned her I was hearing impaired so it was not good to give such a person an oral exam. She demanded I start the test over. At that point, I exploded. There is no other word for it. I threw her out of my room and told her that she was not allowed back in for any reason. I then called the nurse on duty and told her to keep this maniac out of my room, that I didn't appreciate the facility's letting obviously disturbed people bother the patients. I never saw this woman again. 

That same evening some salesperson barged into my room because he was convinced, when he saw my sleep apnea machine from the corridor, that it was one of his. Medicare bought the machine for me many months earlier. Rebecca was visiting at the time and she said the look I gave this guy was so malevolent that he simply turned and ran away. 

Lastly, the dining service wanted me to join the more festive atmosphere they'd put together in the dining room. It now had the ambience of a cruise ship. For this problem, I hunted down the manager of the rehab facility. I told him I was there solely for my leg, not to socialize. I was in terrible pain and wanted to continue to eat in the peace and quiet of my bedroom. Thereafter my food was delivered to my room. 

If you do not grab the bull by the horns and actively participate in the handling of your case, all of these professionals are just going to walk all over you and "manage" your case for you, usually to your detriment.

Above all, you need one person in your personal world who will go through the hospital and rehab periods with you and then take you home. In my case, it was my husband Jim-Felix. He has done a fabulous job throughout and has hung in there when the going got super rough. I should add that the Felix personality is perfect for detecting problems in a hospital or rehab center. He spotted lighting problems in my bathroom at rehab and fixed the problem himself. Likewise, he grappled with transportation, walkers, braces (he built a brace for my tennis shoe) transit in our own car (to avoid the awful ambulance-truck and chased down these workers if there was any worry about their changing my records or orders. 

Let me at this point also thank the kind friends who were so supportive during this period.  

A word about the blog. This blog will be published on Monday and Friday. I simply do not have enough material to continue to cover three days a week. I will have entertainment features but they will appear on either Monday or Friday and as the spirit moves me.


  1. Glad you're home and in full recoup mode! Thank you for invaluable advice on navigating such experiences--when in the midst of it all, it's practically impossible to think clearly and discern what is helpful from harmful treatment. Once again, you and Felix demonstrated some of the many strengths of your partnership!

  2. Same thing happened to a friend of mine when she was transferred from CCF to rehab. No pain meds for hours after the knee replacement.