Knee Infection* Third time's the charm, I hope

Overall health picture continues to be challenging. Was lightheaded today due to low blood pressure while standing. So I spent most of the day in front of the TV, drinking liquids, avoiding standing up. I'm OK now. Gut still hurts. I have some expletives in mind but will leave that to your imagination! Maybe tomorrow will be better?
 
My F/U is Aug. 26th. I am also being followed by an infectious disease doctor. Each week I have PICC line maintenance, and at the same time they draw blood for standing order labs. When I left the hospital two weeks ago my hematocrit was 27 and it's still 27, which is not low enough to need transfusion but leaves me without much energy. I suspect my antibiotics are partly to blame. I will be on IV antibiotics for 3 weeks 3 days more, and the oral antibiotics will be for six months. It's a living nightmare. Just making the best of every day. My son is here to help out. I do have a chore list but I am in dire need of more than my husband can give me. Would love a hot bath (cannot immerse yet) and/or a massage (they are all booked up due to summer people and tourists). This too shall pass?
I hear you about the hot bath. Heck even a shower would have felt incredible. Instead I was relegated to very careful sponge baths with my picc line arm and knee incision wrapped in Glad Press and Seal for 10 weeks!!! No real bath or shower for 10 weeks! I was so grateful when the picc line came out and the incision scabs fell off.

I’m thinking about you and praying for you Mary. Hopefully your life will get back to normal and stay that way in a few months. In the meantime, rest, read, watch tv, and try not to worry. Keep your eye on the prize - having a good, strong, fully functioning leg for the rest of your life. It’s easier said than done; believe me I know.
 
Thanks @Mrs. Ciz for your words. Mean so much to me.

Two (or was it three? You know how the timeline gets blurry, I'm sure) days ago I stopped the oral antibiotic. The ID doc said I could do that for a week. Each day since I feel better. He's on vacation now, but I would anticipate being prescribed something different. I was having dangerous drops in BP, fevers, just feeling more miserable every day (even though the knee is improving). But having stopped rifampin, the last two days I feel more alert and my gut's somewhat better. @Mrs. Ciz what was the bacteria found in your case, and what has been your antibiotic regimen?
 
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@maryo52
They thought my bacteria was a gram positive staph but now believe it was a gram positive P. Acne. Apparently nothing ever grew in the multiple cultures they did. I was on all sorts of antibiotics during the clean out hospital stay. I went home with medicine balls of Vancomycin - two 2 hour infusions a day. After about a week and a half, I started getting intermittent high fevers. My doctor wasn’t sure if it was the tibia bone infection getting worse, or an infection in the picc line, or a severe reaction to the Vancomycin (this was it). My white blood cell count dropped to zero, and I had very dangerous neutropenia. I went back into the hospital for 5 days to get the neutropenia under control and to prevent sepsis. Then I was sent home with Daptomycin (one 40 minute infusion a day). IV infusions lasted 8 weeks. Then after my final revision, I was on oral antibiotics for 30 days. I hope this was good enough!!!

The source of my infection is up for debate. It didn’t present itself until 7 months post op. And even then, the only pus found was under the lower plate in the stem hole the surgeon had drilled in my tibia bone. It was a very slow growing bacteria. If it was P. Acne, it came from my skin and got in there during the original surgery despite the extensive infection prevention protocol we followed. If it was staph, I believe it came from an ingrown hair in my bikini area. With BTKR, rolling over in bed was very difficult and caused a lot of friction in that area. I remember getting a dime sized red bump there during the first month and a half post op. It eventually broke open and drained. I didn’t think anything of it, but now I know I should have seen my doctor for antibiotics. You’d better believe that any knick, cut, or bump I get anywhere on my body will be watched like a hawk from now on!!!!
 
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Yeah, in the location you describe it sounds like a surgery was when it happened.

They have asked me all about what happened in the two weeks prior to July 25th when the knee blew up, got hot and was so painful I couldn't walk on it. You and I have lots of down time, time to think about how it happened. And I come up with no ideas. Oh well, water under the bridge.
 
Every time I make any progress, some new problem arises. Right now I am struggling with intractable back pain which gets set off when I lay down. Thus in the past week I've only had one good chunk of sleep. I wonder if I am experiencing complex regional pain syndrome or similar. Really puts me in bad shape mentally and emotionally. Trying to stay positive but all this year I've had one medical challenge after another.
 
Mary,
You have had one challenge after another this year. Hoping you can get a handle on your back pain, and your knee is healing properly.
Your back pain may be from being inactive since your surgery at the end of July, you may want to ask your surgeon and ID about it,
Sending positive healing thoughts your way.
Chris
 
Pumpkin, I think you're right. I've been sitting on my tailbone for more than a month, most of that couldn't be helped. I'm debilitated. My quad is weak also. Today I went out walking twice and tried to go about my day a little bit closer to normal . . . dozed off several times in several places. I've started some back stretches too.
 
Thanks for asking @Pumpkin. Actually the knee is doing great. A couple of adhesions got broken during the surgery so I am riding my bicycle more easily than before. At followup Dr. Freiberg was very pleased and said I was in the top 10% of his career knee infection patients. I was thrilled to have the PICC line out and take a shower six weeks out. I'm on oral antibiotics for at least six months, at which point we'll make a decision about whether or not to continue suppressive therapy, as my hardware was not exchanged (just the polyethylene spacer), and of course bacteria are hard to 100% eradicate in that setting. Starting to live my normal life again.
 
Thanks for the update, happy to hear you are doing well and your knee is moving smoothly with the removal of adhesions during the spacer exchange.
Hoping the oral antibiotics get rid of the last of your infection, and you can get back to your normal life.
 
@maryo52 , bless your heart! This Friday I'm having stage 1 of my revision, due to infection. I'll continue following your progress and keep my fingers crossed that your newest journey is a huge success!
 
@Starsfan22 @Jamie

Just checking in to say things are going very well. I am still on oral antibiotics until March 8 when I see both my OS and infectious disease doctor. I hope and expect to be off antibiotics after that and if not, I am prepared to argue with them. The knee really is as functional and non painful as ever, but that leg suffered other issues in the past year (run over by my car, and melanoma). So I'm wearing a compression stocking because of lymphedema. Except for yanking the stocking back up my thigh a few times a day, my knee is is not in my thoughts.
 
Happy to hear you're doing so well. I'm off all antibiotics, my blood work is where it should be, thankfully. I will live in fear of the infection returning for the foreseeable future.
 
@maryo52 .... I'm so glad to hear from you!!! And it's great that your knee is remaining functional, even given being run over and melanoma....:flabber:. I know you'll make a case for getting off the antibiotics and hopefully that will come to pass.

You might do some research on an edema product that's just getting going here in the US. It was developed in the UK and has had tremendous success in reducing swelling. It's been approved by the FDA, but now the issue is getting the word out to surgeons. We are developing an educational page on it.....it's called GEKO by FirstKind. In the meantime, here is a link to their website:

 
@Starsfan22 I didn't have two stage like you. They didn't take out my hardware (it's revision hardware, with long stems, kind of hard to remove). I had what's called DAIR which is "debridement, antibiotics and implant retention." The success rate is variable and can be low. My surgeon says he has a high success rate. We'll see.

@Jamie thanks for the info on that device. If it works for lymphedema, I'll definitely be interested.
 
Yes, it does work for lymphedema. So it might be worth a discussion with your doctors. If either of them would like more information than what's available on the website, our CEO (Mark Sacaris) can provide them with whatever they need. Just let me know.
 
I tried for that revision, my surgeon said no way. Interesting huh? Good luck to you and your recovery.
 
@maryo52 I am sorry to see that you have had a hard time. Infection is something that we all fear!! It sounds like you are doing well, which I was happy to read.

I got a new hip in Oct and just had my first ski day (Minnesota style, a tiny hill!) 2021 has been a tough year, I am glad to see 2022 start and hope for a better year. Kelly
 
@skigirl 2021 held a lot of unpleasant surprises for me, but all the support I received more than made up for it.

@Starsfan22 There are at least 3 levels of surgery for infection and it all depends on several factors. My infection developed rapidly and my components were already revision components with long stems that made them hard to remove, which BTW has a lower success rate. The two stage has the best results.
 

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