Struck by lightning twice
Well, I've gone and done it again: my replaced knee has the exact same sort of infection it had almost exactly a year ago. We don't have all the answers yet, but I've put this post together to let friends and family know a bit about what's going on.
⇨ I have an infection in my right knee, a recurrence of the infection I had last year.
⇨ It's being treated with hardcore antibiotics, and that may clear everything up. We'll know the answer to that within a couple of weeks.
⇨ If the antibiotic treatment doesn't get the job done, I'll have another cleanout surgery. It would likely be more invasive than the one last year, with an longer recovery time.
⇨ This was bad luck, again. Last year, I had an infection in a situation where about 1% of patients get an infection. We addressed it with a surgery that has a 70% success rate, and a much faster recovery than the option that has a nearly 100% success rate. But it looks like I'm the unlucky 30%, so may need the more invasive surgery (the one NIH refers to as the "gold-standard approach", and that will require a year or more to fully recover from.
⇨ We'll know more in two weeks. I'll post when we know more.
The situation started suddenly last Thursday, and I've been meaning to write something up or call a few folks and let them know. But the pain has been absolutely excruciating much of the time, and I've definitely not been myself. An example: two little boys rode their bikes down our alley over the weekend, and when the dogs barked they squealed and barked back, making the dogs bark even more. This so enraged me that I hobbled out onto the deck with my walker and flipped them off with both hands, just standing there scowling and looking stern and surly, and they pedaled quickly away. Sorry, boys, I'm really not that thin-skinned most of the time!
But today, after a dalbavancin infusion 24 hours ago, I'm feeling so good that I find myself smiling and laughing. Still a bit of pain, but I think I'm ready to write up what's going on.
Last year, when I had the first infection, I asked Dr. Pullman what I could have done to reduce the chance of getting an infection, which occurs in less than 1% of patients with knee replacements. His answer was "nothing, you just got struck by lightning."
At the time, however, he and the orthopedic surgeon warned me that the surgical treatment we were doing had about a 70% success rate, so there was a 30% chance I'd have a recurrence of the infection. I was in the unlucky 1% the first time around, and the unlucky 30% this time. This is why I don't play Lotto or buy pull tabs!
Last Thursday: the day everything changed
Last Thursday started like most days around here. The dogs and I rolled out of bed a little after 5AM, and as soon as I stood up I noticed that my knee was stiff. That happens sometimes, and I assumed that I'd slept crooked on it or something.
But after a couple of mellow dog walks in the morning, which I thought would loosen up the knee, it just seemed to be getting worse throughout the day.
In hindsight, I wish I'd gone to the ER that afternoon. The swelling and stiffness reminded me of the infection last year, but it's hard to articulate exactly why it felt different from the soreness I sometimes get after a hike or a good workout.
I spent the evening with ice on it, and went to bed planning to go the ER in the morning if things were still the same. Things weren't still the same in the morning – the pain was much worse, and I barely got to sleep all night. Just a few short naps between 2:00-5:30.
I was at the ER at 6:00. Megan is out of town in the UK (will be home this weekend), so I left the dog with bones and plenty of water, and drove over to St. James Hospital, which is barely half a mile from our house.
Dr. John Pullman, an infections expert whom Butte is very lucky to have, is the doctor who treated my infection last year, and and his team have been handling my case ever since. I said to Dr. Mayer, the doctor who was handling me in the ER, "I assume you know Dr. Pullman," and he smiled and said "got him on speed dial." By 6:30 AM, Dr. Pullman was in the loop and helping diagnose what was going in. The last time I needed Dr. Pullman, in December of last year, it was 9PM on a Saturday night and I texted his personal cell phone number, which he gives to all of his patients; within minutes, he called me back.
Test results at the hospital were a mixed bag – blood work showed elevated C-Reactive Protein (CRP) and absolute monocyte count, but normal overall white blood cell count, x-rays showed nothing abnormal, and ultrasound showed lots of swelling, but no clear source/origin. So we did the one thing that would identify exactly what was going on inside the knee: numb things up, then use a long needle to extract fluid from inside the knee, and send that fluid to the lab for analysis. Extracting the fluid felt wonderful: instant reduction in pressure!
About 30 minutes later, we had a partial answer: there were elevated levels of white blood cells in the fluid. So my knee seemed to have some sort of infection that my immune system was fighting, but we couldn't say exactly what type of infection or where it was located.
We sent the fluid off to the lab for analysis, and Dr. Mayer sent me home with some hydrocodone to get through the weekend, and instructions to contact Dr. Pullman's office first thing Monday to set up time to get in after he had the test results.
It was a pretty miserable weekend. In hindsight, I wish I'd asked for more hydrocodone. I had enough for a hydrocodone-aceta 5-325 tab (5 milligrams hydrocodone and 325 milligrams acetaminophen) every 6 hours through the weekend, but that wasn't a strong enough dose to get any sleep. On Sunday, I sucked it up and skipped my afternoon pain meds so that I could double up at night, and that got me a few hours of decent sleep Sunday night.
How my summer went before then
While waiting for a 2:30 appointment on Monday to review the test results for the knee fluid, I was thinking about the fact they were probably going ask me how my knee has been doing since I last visited Dr. Pullman's office a few months ago. I was planning to tell them that after the long recovery process last winter, my knee has been doing really great, and then I decided to create a 1-minute video that I could show them on my phone instead of just verbally saying that.
I've been practicing a lot with Cyberlink PowerDirector video editing software in the last year, and I take videos with the dogs almost every day, so I had lots of raw material to work from. And having run out of pain meds late Sunday, by mid-day Monday I wasn't really fit for much else so it seemed a good use of my time.
My 1-minute answer to the question "how's the knee been holding up this summer?" Dr. Pullman's PA Erin felt well-briefed after watching it. 😄
I'm glad to have that video now. It will make a nice "before" clip for whatever I end up going through in the months ahead.
The test results were simple, straightforward, and disturbing: it was a recurrence of the staphylococcus aureus infection that I had one year ago. Erin teased that with those test results I had instantly gone from an inspirational story for their office ("we have a 68 year patient who had a sever knee infection, and within months he recovered enough to be lifting weights and hiking with his dogs!") to a cautionary tale ("a staph infection can hide under microbial biofilm and recur months or years later, no matter what we do to treat it").
FYI, the world record for this type of infection hiding under microbial biofilm before recurring is over 20 years. Not something aspire to, but good to know.
The Wikipedia page on biofilms reads like something out of science fiction. The basic idea is that Gram-positive bacteria (bacteria with tough external cell membranes, such as the staphylococcus aureus I was dealing with) can group together on an inert surface such as an artificial knee and then cover themselves with a protective layer that helps evade a variety of threats, including antibiotics. These little "cities for microbes" have existed for over three million years according to fossil records, and arose as an evolutionary self-protection mechanism for bacteria and similar organisms, because conditions in those primitive times were too harsh for their survival.
Erin gave me a prescription for plenty of hydrocodone, and I drove straight to Blacktail Pharmacy and waited until it was ready. I had never used their curbside pickup before, but having run out of pain meds late the night before, I really needed it!
I think that drive home from the pharmacy was the absolute worst of this whole experience, in terms of pain level, but doubling up on hydrocodone got me through the rest of Monday and Tuesday just fine, and then on Tuesday I got a dalbavancin infusion. More on that below, but first the obvious question I haven't directly address yet: what hell just happened?
What happened?
The short answer is that we'll never know what happened.
This isn't like debugging a computer program, where you find a line of code that has a problem, replace it with a different line of code, and then you can verify that you've found the source of the problem and now it's fixed. Medical diagnoses are more often like the problems historians grapple with. Why did the Thirty Years' war happen? Why did the Byzantine Empire fall? Only an ignorant or inexperienced person could say a specific answer to those questions with any certainty.
Knowing that, I've really worked over the years on developing skills in having a conversation with a medical professionals along the lines of "I realize it's something we'll never know for sure, but if you had to guess, what's your gut feeling on how this happened?"
In my particular case, the medical professionals involved think this is the mostly likely explanation:
- A year ago, I got a cut or a scratch somewhere on my body, and some staphylococcus aureus bacteria got into it. That event has probably happened many times to every person reading these words, and usually your immune system kills off the bacteria and you never even know about the cellular-level battle that just played out. A well-functioning immune system is a wonderful thing.
- Some of those cells made it to inside my shiny new replaced knee, where they could form a colony and reproduce in peace, because an artificial knee made out of titanium and polyethylene don't have an immune system to fight them.
- As part of their survival strategy, the bacteria inside my knee formed a microbial biofilm that they could hide under, where my immune system as well as antibiotics couldn't get to them. (More on microbial biofilms below).
- Those bacteria have now moved out into the tissue around my knee, where they're wreaking havoc.
There's a pretty good Wikipedia page on microbial biofilm. The basic idea is that Gram-positive bacteria (bacteria with tough external cell membranes, such as the staphylococcus aureus I'm dealing with) can group together on an inert surface such as an artificial knee, and then cover themselves with a protective layer that helps evade a variety of threats, including antibiotics. These little "cities for microbes" have existed for over three million years according to fossil records, and arose as an evolutionary self-protection mechanism for bacteria and similar organisms, because conditions in those primitive times were too harsh for their survival.
I had never heard of microbial biofilm until last year, but now it's my most interesting medical topic. I found a good paper online that covers what it is and how it works, and after studying that paper, I found that the authors have published a book on the topic. I rooted around online and eventually found a used copy from the University of Notre Dame medical library – it will arrive on my doorstep Monday. Know your enemy!
Depending on how I feel when this is all done playing out, I may need to get a custom t-shirt made that says FUCK MICROBIAL BIOLFILM. People wear those FUCK CANCER t-shirts around town, so I can wear a shirt like that in polite company, right?
Likely outcomes
The best case scenario, and the one that Dr. Pullman feels is most likely, is that the dalbavancin/rifampicin will clear things up. In which case I could be back to good in a few weeks.
The other possible outcome is that I'll need a two-stage revision infection cleanout, in which case my recovery may take a year or more. If you want to know the details of two-stage revision surgery, see my writeup from last year on knee infection cleanout surgery options.
Next steps
I had a dalbavancin infusion yesterday, and I'll have another one next Tuesday. Dalbavancin usually kills 90% of the bacteria within 24 hours, and indeed I'm feeling quite a bit better 24 hours after the first infusion. I've cut my pain meds in half, and expect to sleep very well tonight for a change.
By a week or so after the second dalbavancin infusion and the start of rifampicin treatment, we'll be able to tell from bloodwork and related tests whether we've eliminated this bout of infection. If so, it's on to physical therapy. If not, we will schedule a cleanout surgery ASAP. There are a couple of options for that – it will either take place in Missoula or Bellevue, depending on a few things to be determined.
I'll end this with something I'm very grateful for: how hard I've worked on my quads, glutes, and hamstrings the last few months. After getting out of physical therapy at the end of February, I've been eating very healthy and working out several times per week, mostly kettlebell routines and weights (dumbbells). It hasn't been easy or fun at times, but Megan and the dogs have been great support on these workouts, and I've grown much stronger during that time, which is going to come in handy for either path I may be on going forward. I've also lost weight, going from 233 pounds when I had surgery last year to 210 pounds right now. I’m feeling strong and have lots of energy and stamina, so I’m ready for whatever is coming.
Thank you all for your support. I feel like I'm playing a one-note samba with these never-ending knee posts, and I really wasn't expecting to be back on this topic any time soon, but here we are. Onward!
