Eight months after second revision of left knee -
So I saw my new ID doc on 3/6, and man, what a difference. She had nothing but scorn for the last ID doc that treated me. In addition to his other failings, it turns out that one of the antibiotics he prescribed was one the infection was already resistant to, despite the fact that the culture results that he already had access to clearly showed the resistance.
Her staff is super efficient and they got me in for a PICC line and first infusion the next day, on 3/7, anticipating that home infusions could start the day after. It turns out that all the visiting nurse organizations were full to capacity, and it took nearly a week to get one set up, despite me, her staff, and two nursing agencies beating the bushes. The delay was tough but it was not for lack of trying on their part - they really made the effort.
So I started home infusions on 3/13 and have been doing it since. Antibiotics sometimes enhance the absorption of caffeine, and this happened to me dramatically. I had a single cup of tea and it was if I'd chugged five cups of coffee. I have had to go off caffeine completely for the duration. That left me fatigued for about a week but I'm over it now.
After 2-3 weeks of the antibiotics I'm starting to feel significantly better. Once I get the #!$%* PICC line out (tentatively around 4/23) I can get back to being a lot more active, work out more, and get more chores done (having a PICC line sharply restricts what you are allowed to do with your upper body).
The first few of the weekly blood test results show the CRP levels decling dramatically, from 24 to 10 ug/dL (0.5 is the upper limit of normal) so I'm happy with the results so far.
Once I'm through this, I have to decide on next steps. The ID doc and others agree that since I've had the infection for more than 2 1/2 years now, the chances of killing it with only antibiotics are zero and the only way to kill it is with a two stage surgery. The problem is that in my case I've lost so much bone from the ends of the femur and tibia (due to surgeries) that they cannot use a regular articulating spacer, and would have to use a carbon fiber rod and lots of antibiotic cement to fuse the leg straight. This would be in place for up to four months while I would be (once again, for the third time) on a PICC line, this time for at least the full four months, followed by the second stage, which might be a rotating hinge knee. This would really stink, and given my ability to generate scar tissue, might leave me with little flexion when all was said and done. On top of this, the ten year success rate for two-stage revisions is 80%, so a 20% chance it would be all for nought.
The only other approved option is to stay on antibiotics (probably doxycycline) for the rest of my life, which has its own problems.
Two crummy options for sure. My plan for now is to go with the antibiotics and give myself some time to recover and gain strength, mentally as well as physically. Then I'll think it through with a clear mind.
United States
