Actually I was right, things are really bad...

Preface: I will include some silver lining, to what will otherwise be a post written in negative tone about the ongoings of what has brought us to this point. However,  I will state that this will go down as one of the worst days of my life (whether it translates fully manifested into reality, or not).

My appointment with my leg specialist was prefaced with my own expectation that the visit would not go over well, interrogative on why I was switching infectious disease doctors. At the same time from talking with my Mom, she reframed it by adding some positivity of thinking (rather optimistically) that my leg specialist would have taken my side and agreed that my infectious disease doctor was negligent in her dismissiveness of this untreated e. coli and be upset about this situation to my benefit.

Instead, I found that we met with the usual introductions when they came into the room. My limb specialist and her assistant came into the room. First on the agenda was looking at the leg. As she worked to remove the sutures and glue (she framed: what is this stuff?), she spoke that my case was reviewed by their interdisciplinary medical panel (or committee) given the concern over my case. We agreed that it was a complicated case. She stated she wasn't sure why I wasn't healing and I am her first patient where fusion and antibiotics has failed. She was blunt, stating that they need to take me back into surgery to re-do the fusion anew, with an overnight stay. I parried this with concern stating I was concerned if this was the same procedure as before, given how painful it was, if one day in the hospital was sufficient.

At any rate, as she was removing the sutures, she then asked about what bellies of my gastrocnemius had been used to construct the graft flap for my knee. I already knew where this line of questioning was going. I responded, I was pretty certain that only the medial belly. She then asked who my plastic surgeon was from a surgery I had a little less than 17 years ago. I then had to ask... are you guys extending the graft, and soft-tissue to the area that isn't healing? She said yes, either during this next surgery, a separate surgery afterwards, or combined into my final surgery for re-implanting my endoprosthesis.

I had questions about the additional two weeks of antibiotics following the re-fusion (if it was going to be a complete re-do (yes), or if we were starting over (at least two more weeks of antibiotics post-surgery, but also depends on what the cultures obtained during surgery shows).

I mentioned about the unexpected blood in my drain along with the air that was filling my drain bulb with air, by bypassing the open incision. She shut me up by saying, "yes... we know".

She then squarely stated that e. coli is a really nasty pathogen and that my case is very serious. Furthermore, if this re-fusion followed by re-implantation didn't work, I'd be looking seriously at amputation.

The conversation then shifted to asking about my reasoning for switching to a different infectious disease provider. At that time, my specialist was sitting in her chair, not moving, laser focused and staring. Her PA assistant was at the foot of the examination table, standing and also squarely locked as I very transparently explained to them the verity of reasoning.

• First off: bad experiences with their office staff. First with the Marshall Fires and their lack of accommodation, their refusal to find another way to get this order at a hospital closer to home (given that US36 was closed and the traffic, and offering me only a little over an hour to get there). And then the next day, once rescheduled, through my Mom insistence with arguing with the first staff on how it was impossible, being hung up on, and then my Mom calling back eventually it was finally accomplished and I received my first dose of the new antibiotic for treating both pathogens in Longmont.
• Second: the mix-up with the home-injection pharmacy during my single-stage revision that was attempted earlier last year, whereby my infectious disease doctor was out of town. Finally, by the time it was Monday, my infectious disease nurse was extremely passive-aggressive to me. I explained I called her back, told her I wasn't trying to get into it with her, but after a lot of gaslighting that it was my imagination that she was rude, curt, and short with me: she actually admitted that "I had to spend my whole fucking weekend here because of you"... and that wasn't even my fault. I told them I didn't fight with her once she admitted to it, I thanked her for being honest because I could tell she was pissed at me for some reason.
• Lastly: my infectious disease doctor isn't in the office all that much. She is really in and out and I'm not receiving the kind of care I need. Additionally, I'm upset that I presented to her around three weeks prior to the discovery with the cultures, complaining of an oscillating fever, pain, swelling, inflammation (lymphedema and a really swollen inguinal lymph nodes), heat in my leg, and never-ending drainage from three gaping wholes in my incision. At that time, she explained to me squarely that it was impossible for me to have an infection, given that I was on DAPTOmyacin... acting like it was the best antibiotic ever. I told them, lo and behold, that was incorrect. E. coli is a gram-negative bacteria and I'm confident I had an untreated infection for the preceding three weeks.

So, here all my brooding over having a drain in my leg (which still hasn't been removed by the way, over a month in - at this point), lack of direction or care from a medical professional to see after this wound, provide the supplies and dress it is very well justified. At first, I chalked this up to the fact they know I'm intelligent, a scientist and lab manager and that I would know what to do. At the time, I felt them piff-pooing around even with Julia, one of their PAs, she asked a week prior to source these supplies didn't get around to it... eventually she just handed me a prescription for the supplies to give to my home health nurse (for my PICC maintenance), but not for an order for her to care for it... go figure.

Also these past three weeks I have sat here, completely listless, not knowing what the next step was. About two weeks ago, I really felt like the answer was another surgery... and now out of the blue they are wanting to a surgery... but why?

Well if we put all of the pieces together, taking into account all of the elements that contribute to its outcome, it's the fact that my leg doctor didn't know what to do when I came back with an e. coli infection... I think it was a shock to her. Given the lack of direction from my infectious disease provider, all she could do is leave the drain in my leg and watch and wait, in the hopes this incision would heal completely. Now that I am reporting blood into my drain and air bypassing... all taken together, the plan to go back in is out of genuine concern and to treat it more aggressively as they should have done weeks ago as a treatment; on the other, to assess the damage and get an idea of what the damage was (at the benefit to themselves, especially given all of this blood). You need to realize that my surgery on the 23rd of December wasn't opening me up, but instead irrigating the wound. When the cultures came back, the right move would have been to do the re-fusion then.

I think their mumm approach and the fact they sat there and defended my old infectious disease provider by stating that my new infectious disease provider stated she did everything by the book correctly, was there just to defend a member of their interdisciplinary team. Furthermore, her pushed suggestion of keeping my old infectious disease doctor out of convenience of proximity was another - although, she did say that working with the new one at a distance was technically possible. I explained that the new provider suggested we keep a working relationship with my old one, on the issue with hospital practicing rights. I agreed, there was no real reason to burn bridges here, but then she seemed to say that I would need to choose, but ultimately ended the conversation by saying it was up to me to sort this part out.

On the way home, I spoke with the new home injection pharmacy that I have been using this time around (thus far no serious issues) that said they only have a prescription for antibiotics through January 27th and asked if I expected to be on antibiotics longer than that. I said yes, obviously... two more weeks until my next surgery, two weeks of antibiotics (minimally - after surgery). I told them that my new infectious disease provider must call in a new one (so that needed to be my next follow-up call). I confirmed with her the invanz was going to be increased to one gram, from 500 mg (so i was confused how that was done without my new provider, since that was her idea and suggestion).

Anyways after going over the list of other supplies that needed to be delivered by tonight, I called my new infectious disease provider. The nurse I spoke with stated what my leg specialist had mentioned to me prior during my appointment that my new infectious disease provider wasn't taking over, but I told her that's weird... I got from my one hour consultation appointment with her, that is exactly what was going to happen and that unless I was reading that situation entirely incorrectly... that wasn't right. Eventually in the evening, I finally got a call back. The first question was: are you happy with Dr. [new infectious disease provider's last name], my response was yes... ok... so now they are going to get me booked for the two week follow-up and she is taking over, great.

Finally, during the interim of waiting for that follow-up call, before 5PM, I called my nephrologist to ask about my IV iron infusions I have been waiting, for around 2 weeks for. I confirmed with him that he cannot prescribe, unfortunately the 100mg/200mg variant, but instead only the 500mg variant (standard). The reasoning for the lower dosage was to offset any possible bad outcome to this infection as the result of the iron assisting the bacteria in replicating, vs. the benefit to my body with gas exchange and oxygenating my tissues, treating my anemia, and iron deficiency. It turns out the medical community is at a toss-up, inconclusive either way of the benefits or risks of incorporating IV iron therapy for iron-mediated anemia in people with active infections. With that, I had to then ask how anemic I was. My iron level is currently at 6 and is supposed to be at 20... I was this anemic back in 2016 (blood transfusion level-bad, back then I was told). So we finally agreed to one 500mg infusion before my next surgery, on Feb 3rd (two weeks from now), and then possibly another a few weeks after my re-fusion surgery. On a related topic: I also need to call next week to check into hyperbaric oxygen therapy as it works well for treating infectious wounds that refuse to heal.

Anyways, wrapping this up... basically this all means that I'm doing everything I can to make things better for myself, as I always have been. This failure is on the fault of a provider, possibly plural. They hit me with the word amputation and I can't help feel that my feelings from not the previous post, but the one before that screamed negativity was spot-on. My gut was right about this. Additionally, I locked my keys in the car and only discovered this after such a bad-news appointment... my fifth surgery for this problem... and either amputation, a new endoprosthesis, or eventually amputation. Also, why all of a sudden after three weeks of sitting on this discovery of e. coli, sitting on their hands as I report back the volumes of drainage to them are they finally doing something about it? I think it's squarely placed on the fact they were hoping the incision would heal shut, but more importantly: the fact I have cued in an outsider, an entirely new infectious disease doctor and that honestly scares them; they are scared about my intent. One of the first questions my new infectious disease provider asked me was: are you seeking to retaliate against your previous infectious disease doctor? If the answer was yes, they wouldn't take me on as a patient. You have to realize my new infectious disease doctor does her homework and called my leg doctor prior to my first appointment with her (since I dropped her name during initial scheduling).

Lastly, my new infectious disease doctor is actually going to take a look into my splenomegaly that was an incidental finding back in 2015 - when my health issues started. She expressed concern with metastasis, but it could also be due to the chronic infection, but she wants to help get to the bottom of that, given my cancer history and the chronicity of my health issues for the past 7-ish years.

I'll end with this thought... I talked this over with my best friend for two hours. He said it well, when he said: if this is your 5th surgery, someone has messed up somewhere. I agree, I told them both about the issues, they recall this, and the mumm result up until this point would have persisted if it wasn't for involving a third party, this new infectious disease provider.