Skip to Accessibility Tools Skip to Content Skip to Footer

Life without a Knee

A few days after my knee removal surgery last November, I was visited by an infectious disease doctor who explained that my old artificial knee had been infected by a common bacteria strain. A culture was taken as the knee was being removed, but until the results came back my orthopaedic surgeon started me on a course of a strong, broad spectrum IV antibiotic. Once the specific infection was identified the doctors were able to choose the most effective antibiotic for treatment.

During the surgery, his team had crafted a “knee spacer”, which was a block of cement infused with antibiotics. Usually surgeons can use off the shelf spacers, but because my bones are small and he wanted to use an extra-high dose of antibiotics, he shaped the spacer to fit me as best as possible while filling it with a strong dose of antibiotics that would leech out and kill the infection.

Now that the infected knee was out, the bacteria identified and the treatment chosen, we could make arrangements for me to go home. The general plan was that I would have six weeks of IV antibiotic treatments at home, followed by two weeks to allow the drugs to clear from my blood, and then testing to check that my system was clear before having the second surgery to replace my knee.

I would be mostly homebound, not only because of the antibiotic treatments but because my movement would be severely restricted with the temporary knee spacer. I couldn’t bear my full weight on the leg, only toe-touch. The only walking permitted was with a walker and I needed to be accompanied so that I wouldn’t fall. Otherwise, I would be in my wheelchair, but not able to go out much because movement could jar my knee painfully.

Although I was glad to go home, I wasn’t looking forward to living without a knee. However, I was very fortunate to have a strong support system. My husband was able to work from home and he was a terrific caretaker. Additionally, my mother stayed with us most of the time to help take turns with my husband and make life in limbo easier. It also helped that I could also do some work from home and have some projects to keep my mind occupied.

We quickly built a regimen to help the days pass. My morning began with the first IV antibiotic treatment, which involved a slow timed expulsion of a syringe into my PICC line (similar to a traditional IV). After breakfast I had some exercises prescribed by a physical therapist, followed by some time to work. Then we had lunch and in the afternoons a visit by a professional physical or occupational therapist. A couple days a week I also had a nurse visit to draw blood for testing and to sterilize the PICC line. Following the afternoon visits I usually had to rest, then possibly more work, followed by dinner.

Immediately after the surgery my left leg lost a great deal of strength. My knee area was pretty swollen and the spacer was very uncomfortable, so I had to manage pain with medications. At first, as the wound was healing we had to be very delicate with my leg, but as it healed it became easier to handle and wash. (It felt like heaven when I could finally take a shower again!) Throughout this time I wore a leg brace to support the leg and protect it. But anytime I wanted to move I needed someone’s help to lift my leg—about all I could do was turn it side to side and wiggle my ankle and toes.

The home physical and occupational therapy were ordered by the doctor to maintain my strength as much as possible between the surgeries. With OT, some of it involved adapting as much as possible to my temporary situation and exercising my arms and hands. The most intensive sessions involved an hour of PT, during which I practiced regimens of leg exercises and walking with my walker. While I was limited in what I could do with my left leg, we practiced exercises to help keep the muscles active. The greater task was to strengthen my right leg to compensate for the left. I needed it to do a lot for an extended period of time, including during my future knee replacement surgery recovery.

Interspersed through my daily treatment schedule were doctors’ visits to check on the status of both the knee spacer and the infection. Going outside was truly a treat! As much as I love my home, seeing the world outside felt new and exciting.

All went as planned until the fourth week of my antibiotic treatment. One morning I noticed itchy red spots on my torso and thighs. Not thinking much of it, I didn’t complain until it quickly spread to my arms, back and virtually everywhere. That afternoon we called my infectious disease doctor and he said to immediately halt the antibiotic, that I was having an allergic reaction to the drug. We were surprised that it was possible to develop a reaction after tolerating the antibiotics for so long, but the doctor explained it was very common. He prescribed Benedryl and said while the allergic rash cleared he would research an alternative drug.

No knee + plenty of pain + exhaustion + impossibly itchy rash = very unhappy Kelly!

I know I was an extremely crabby patient and coming to the end of my rope. I wanted this whole thing to be over. I was done with having missing body parts. And how was it possible to have so much pain and exhaustion from not having a knee? I was used to my rheumatoid arthritis causing pain and was surprised that NOT having a joint could be very painful as well. On top of all this, I wasn’t mobile and frustratingly dependent on the help of others.

Thankfully, my rash faded quickly after a couple itchy days and the new antibiotic didn’t cause a reaction. I finished the last two weeks of treatment, then waited two more weeks for the drugs to clear. In early January I passed my bloodwork and the doctor’s proclaimed me infection free. There was a small chance it could be lurking, but the odds were extremely low because of the long course of antibiotics.

We quickly moved forward with scheduling my knee replacement surgery for early January and I started to feel hope that I was nearing the end of this ordeal. For the last phase I needed my moral support and cheerleading from my husband and family, for while it was the end of the road it would also be the most physically daunting.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • KSawyer
    2 months ago

    Kelly,
    I know this post was from a long time ago but I really appreciate that you took the time write it. I am heading back into surgery on Monday and it is highly likely that they will remove my new knee replacement due to infection. So I’ve been cursing the web trying to find out what people do during this “knee hiatus” and how active I can expect to be. So finding your story was a relief.

    I have OA rather than RA, with one very successful left knee replacement but the right one has already had to be cleaned out/debrided once. My husband passed away in December, so I am trying to figure out how much help I will need. I work out of the house (testing students for LD and ADHD) so think I will be able to keep that up as summer is one of my busiest times.

    Just wondering if you have any other advice for me in terms of exercises, etc. Luckily, so much can be delivered now in my area. And I have an adjustable bed that we bought for my husband to help him as his condition got worse, so I can get comfortable more easily than stacking up pillows. I would just love any advice you have for me. Many thanks!

  • Kelly Mack moderator author
    2 months ago

    Hi KSawyer, Thanks for your comment! My apologies that I am just seeing it now. Hoping that if you had the surgery, that it went smoothly. My doctor prescribed me physical therapy visits at home during my knee hiatus. I had to be careful not to bear weight (put too much pressure) on that leg, but was able to use a walker and get around (although with some difficulty). If you are in a rehab facility that may be even better as you may have more help and therapy there. When you have a chance, let us know how you are doing. It can be a difficult period, but it will pass and you will feel better. Hang in there! Thinking of you and sending healing thoughts. Best, Kelly (RheumatoidArthritis.net Team)

  • Kelly Dabel moderator
    2 months ago

    Thank you for commenting and sharing KSawyer. So glad that this article was helpful to you! You are not alone here. Definitely reach out to your doctor for suggestions regarding safe exercises and equipment and consider asking about Physical Therapy. In addition to speaking with your doctor, this list of links may be helpful to you: https://rheumatoidarthritis.net/q-and-a/tips-for-knee-replacement-surgery/. Wishing you the best, keep us posted if you’d like. Best, Kelly, Rheumatoidarthritis.net Team Member

  • RHPass
    4 years ago

    Kelly your story gave voice to one of MY biggest fears. My doctors all agree that my concerns are merited, but they are both almost nonchalant about it (i.e; ‘just skip the Humira before & after it’ll be fine” as if my immunity would be magically restored). so I am now considering getting a 3rd opinon with a new Ortho surgeon (from Canada) who claims to specialize in minimally invasive joint replacement. we shall see. Best of luck to you in your daily ventures and i hope good health is yours also.

  • Jillian S moderator
    3 years ago

    RH Pass,
    Thank you for sharing your experience.
    The ortho surgeon from Canada sounds promising- I truly hope s/he addresses your concerns and takes you more seriously than your other doctors.
    I think getting multiple opinions can be helpful and you deserve to have a doctor who understands you and explains things thoroughly.
    If you’d like to read more about RA and surgery, check out this article: https://rheumatoidarthritis.net/living/surgery-may-part-battle-ra/
    Keep us posted if you decide to go for the 3rd opinion- we’d love to hear how it goes.
    Best,
    Jillian (Rheumatidarthritis.net)

  • Norreen Clark
    6 years ago

    So sorry to hear of all you have had to go through. I’m lost for words cause I myself almost had to go through the same thing because of an infection. Mt thougths and prayer are with you Kelly.

  • Kelly Mack moderator author
    6 years ago

    Thanks Noreen–really appreciate your kind and supportive words. It has been a tough road, but very glad to finally be feeling better.

  • Poll