Options are good, in doctors and beer!
So once J had been released from the hospital with an actual diagnosis it became a made dash in all directions. The first doctor we saw was his ortho who had put his knee replacement in 8 years prior. He was absolutely the right guy for the job then...now...I'm a little annoyed almost a year later still because as soon as his wound appeared we had been messaging them and they were unconcerned until J was in the hospital... so I'm still a little peeved about that, but I digress.
His ortho, once he started paying attention, immediately wanted to do a knee replacement revision. Which on the surface seemed like the best way to go honestly. We flew out to NYC a week later with the intention on having that done. Once we were there and he saw J's knee wasn't swollen/red/typical infected he slowed down a little and brought down the head of infectious diseases at a very well known NYC hospital for us to talk to. Literally picked up the phone called him, and he was down 15min later which honestly brought home to me (and I'm sure J) that this was a huge problem. The fact that you could have the head of a department come see you immediately didn't make us feel warm and fuzzy.
I instantly liked him. He's very honest and was like "this isn't normal." That being said he was suggested maybe don't do surgery yet, he mentioned a few words I wish I had picked up on in that initial visit like " phages." But to be far I think both of us were just extremely concerned about how bad the situation was and that this guy walked down from his office to see us immediately. At any rate we left NYC with the basic plan of sticking with the antibiotics and buying time since his knee is "functional."
Once we returned home we started shotgunning calls to doctors that we could find that would be good in this small field. We didn't need/want someone that could do a straight joint replacement we already had that. We wanted "outside the box" as his ID doctor said. It took about a month to start getting the first round of appointments in. This is where I stress how important it is too get different opinions. Not all doctors are created equal.
We saw a dr. at Cleveland clinic who was worthless. Within 5 minutes I knew he wasn't useful. He said he wouldn't do surgery but also that staying on long term antibiotics is bad because when J was 60 he could get a paper cut and die. I'm not exaggerating that's what he said. So this is when I started digging for doctors that specifically dealt with joint infections and osteomyelitis.
We saw an orthopedic guy in one of the Carolina's (I don't remember which) he was too old. However his PA was really good and gave us an "outside the box" idea of just cleaning out the bone that was infected and seeing if that did any good. Ok...so not our guy but at least an idea.
We sent his stuff to Mayo, they never called us back ( for this, later we did talk to someone at Mayo in regards to their phage program). He saw a doctor in Houston at Baylor whom we both loved and have agreed that if he has to have surgery that's probably our best bet. The coincidental part of finding him is that we had no desire to see an ortho guy at Baylor, we didn't care who we saw, we just wanted into the Infectious Disease (ID) department because they had phage program. They assigned us an orthopedic doctor randomly and he was amazing, best surgeon we saw.
We saw one more doctor at Cleveland Clinic in Florida and he was good, not our guy but he was for sure good. We also had many cancel on us once we sent his records over saying that was out of their wheelhouse, fair enough, I'd rather not waste anyones time.
We did luck out and find an ID doctor locally. I love him, he's sarcastic, pessimistic all right up my alley. The first time we met him he was like "yep this sucks, every day you're as good as you are is a gift." The second time he told J "everyone has problems and this one is yours." He's amazing, honest, and funny, and retiring in June which we are so sad about.
Suffice to say options are good and doctors can vary immensely and sometimes the ones you don't think will be good are the best ones!
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