A Patient’s Journey after Knee Surgery:  The Zone of Darkness

The following is a real patient account following orthopedic surgery.

Upon leaving the hospital after knee surgery (ACL reconstruction), I felt good and assumed I had the information I needed for recovery.  I had a folder full of papers and supporting documents from discussions I had with the physical therapist and nurse upon departure.

I got home, napped, and then read the instruction sheet from the hospital.  I had instructions for the bandages, exercises, the stocking on my leg, pain, showering and crutches.  They sent me home with a cryocuff pack to ice my leg. 

Upon leaving, I’d asked the nurse how to place the ice pack; she confirmed that I should place it on top of the brace. I followed her instructions and put the pack outside the brace, which prevented any cold sensation at all.   I assumed I was doing it wrong.  To at least feel the cold, I moved it under the brace.  It would have been nice to have more specifics. I wished I had someone to email or message just to see how to do this. 

The instructions told me to take two pain killers at bedtime, two in the middle of the night and two upon wakeup. The departure nurse said the nerve block administered before surgery would last 12 to 24 hours.  There is a big difference between 12 and 24 hours.  I really had no idea if I should wait and see if the nerve block wore off before bed or just take the pills. 

I really did not want to take painkillers and was nervous as to how I would feel.  But instructing me to take 6 pills in 8 hours must have meant it is really going to hurt. At bedtime, I still felt no pain, so I took ibuprofen for inflammation and went to bed.   I assumed I would wake up in pain. Again, I wished I had someone to ask.  It was late so the office wasn’t open.

I woke up feeling a bit stiff and achy, but I was not experiencing pain.  I assumed the nerve block was still working.  So, I figured I’d eat and take the pain pill after breakfast. Fast forward a few hours, and I still was not experiencing any pain.

Over the course of my recovery, I used zero of the 50 painkillers prescribed.  It’s not like I am super tough; I just never even got close to needing a single pill.  Why did they prescribe 50?  And why did the instructions tell me to take six opioids in eight hours when I needed none? 

I was told that after two days, I should remove the dressings and place bandages over the incisions.  The paperwork noted I had two small incisions.  But, when I took off the bandages, I had three small incisions, one which was all white, and a 1-inch incision which was covered in blood.  I hoped the white wasn’t a sign of an infection.  I bet some people might think it was and go right to the hospital.   (Also, I’m not sure why it said two incisions, as I could see four).  I pulled everything off and put a band aid over each of the four incisions.  What I learned a day later, was that the white on one of the incisions was some type of glue because it fell off!  It would have been nice to know that, so I wouldn’t have worried about it being an infection.

I couldn’t find any information on the CPM (continuous passive motion) machine that was delivered to my house.  (You put your leg in it and it keeps the leg moving while you are seated.) I wasn’t sure how frequently to use it and there was some conflict as to the setting.  The man who delivered it set it at 40% but he said the doctor suggested 60%.  He told me to ask the doctor as 60% was very high.  However, I didn’t see the doctor after surgery and forgot to ask the nurse.  I dug through the paperwork that was sent to the house when I registered a couple of months ago.   On that paperwork I found, ‘Do not remove the steri strips over the incision’.   What?  I removed them this morning following the other instructions.  Am I going to get an infection?  Should I call the office? 

But, as I continued reading, it said to remove all dressings on day three before a shower.  I think I was only a day off.  I guess no big deal.

Fast forward to my nurse appointment five days after surgery.  She asked why the steri strips were still not in place.  What?  I told her I had two conflicting sets of instructions, but one said to take the dressing off on day two and one said day three (and they both said ‘all the dressings’).   She said that didn’t mean the steri strips.  Once again.  Confusion and no clear instructions.   Thank goodness there were no signs of infection. 

The instruction sheet from the hospital said to use the crutches from partial to full weight bearing in three days.   But I found another sheet that said crutches 14 days, followed by an indecipherable word that was written by the doctor.  I also had a leg brace.   I really didn’t know if I needed to use both the brace and crutches and really had no idea for how long.   It would have been helpful to be able to send off a quick message for clarification. 

At day five, I was able to ask the nurse.  Apparently, I really shouldn’t have been walking with full weight bearing.  I hope I didn’t injure anything inside my knee. 

Regarding exercise, I had two sets of instructions from the hospital.  One included pictures but the before and after was the same picture so it didn’t make sense. Additionally, one sheet was different than the other sheet.   So, I just did a series of exercises.  When I saw the nurse at day five, she gave me a prescription for physical therapy containing a number of exercises.  When I got home, I read it.  The post op exercises on the list were not what had been discussed in the appointment.  They also had terms like ‘walk with normal gait’.  Does that mean walk like I usually walk?  I am definitely not doing that.  And these exercises were different than the first two sheets of exercises I was given.  I really had no idea what exercises I should be doing. 

Needless to say, during my first week post-surgery, I had numerous questions and many inconsistencies in my care plan.  It would have been very helpful to have someone to contact or email.  I didn’t bother calling the office for two reasons.   Nothing was truly urgent, and last time I called, it took days for a response, so why bother?  I feel that in the end, I was lucky enough to figure it out and have no complications, but I’m certain that would not be the case for everyone. 

Health Helm’s Trusted Patient Coach solution is designed to mitigate communication gaps and provide consistent instructions and messaging to patients as they recover from surgery or manage through chronic conditions.  Our mission is to support patient wellness through patient-reported outcomes and patient-clinician collaboration.


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