Finally things are looking up

Sorry for my last post. It was written where I was mentally down and felt dragged down by this whole ordeal. Since then a few things have happened that puts some light at the end of the tunnel and something tangibly to look forward to.

To start, earlier last week my nephrologist called and we had spoken about getting me setup for some IV iron infusions. Up until now that has been a wash. I called and found out that BCH doesn't allow their assistants to enter in the orders and my actual nephrologist has to login to their portal and place the order. This means I should be receiving a call (or will call them tomorrow afternoon) to get setup for regular infusions. Hopefully this aids with the healing process. It would be great if it helped out with my energy issues (but in 2016, I noticed only a minor improvement from the ongoing CFS).

Next, over the weekend, my drain switched from that serosanguineous colored fluid to purely blood there for a while. I called over the weekend to report this finding to my leg specialist, along with noticing that the JP drain bulb was inflating in-between dressing changes for my leg, of course - per usual still have a small opening in my incision - but it's slowly healing, and finally to pass word along that I am considering switching infectious disease doctors. There are a myriad of reasons for this I would rather not get into, but let's just leave it with her office staff are awful and the most recent oversight on the part of my infectious disease provider stating there was no way I could have an infection - and ended up having an infection!

I met with my new provider in Boulder. She actually chose to take my challenging case, mid-treatment, but we agreed it would be best if we could keep the previous infectious doctor in the loop and keep things collaborative - in the case of future surgeries down in Denver. The plan, as she outlined when she spoke to my leg surgeon (she tracked her down and called her, herself, prior to my appointment to make herself privy to many of the details) is to finish out the four weeks of Invanz (the new antibiotic), followed by a 2 week antibiotic vacation, then a wait on cultures. If the cultures come back clean, it sounds like I'll be ready for my next surgery. As far as the timeline of that next surgery - I'm not certain. If they stick to the original 12-week long window, then I imagine I would have surgery as soon as the cultures come back clean... otherwise they will have to add on six additional weeks prior to surgery. With that timeframe in mind, minimally we're looking at early-Feb discontinue, mid-3rd week of Feb aspirate/culture, followed by 7-14 days of culture time for the result. Feb 19th will be the three month (or 12 week mark), so we'll need to see how they're handling the surgery schedule.

Of course, if the cultures come back with untreated infection, I believe that would mean either: 1) irrigating out the area and additional 4-6 weeks of IV antibiotics, or 2) more aggressively, possibly removing the current fusion, replacing it, and then starting over, or modifying the regimen to a 6 week course instead. This is just my estimate of what they would do. I can tell you though that my new infectious disease doctor is considering increasing my dose of the Invanz, and hopefully the IV iron will help and not work against the healing and elimination of the pathogens.

My leg specialist has asked for me to be seen in person at her office on Friday at 12:45PM to discuss the plan going forward - so I'll know more, by then. I really do think my anemia should be treated (even if there isn't a consensus on whether IV iron is a good idea, considering bacteria use iron to replicate). I also think when the new endoprosthesis is placed, they should, as my limb specialist's PA stated: remove the existing scar tissue. I imagine when they are in there anyways, they'll be debriding my soft-tissue like crazy. Let's hope they don't find any osteomyelitis caused from untreated infection and I won't end up with a fractured femur again :) Of course, after all of this, the fun starts: I will have to learn how to walk again. So between the surgery and the PT, I imagine I'll be in a massive amount of pain. I'm not looking forward to that, but so long as my pain is managed well and a new infection doesn't emerge, I should be able to hold my shit together. In the event of another infection, which wipes the board clean and where I would need to start the 12-week cycle over again, anew... personally I don't think I can make it through a two year recovery like that. So hopes and prayers - that's it. I have already been dealing with a lot for so many years, let alone this whole leg problem.

One final note: my new infectious disease doctor is going to look deeper into an incidental finding from 2015. Basically, it was discovered I have splenomegaly. She mentioned in her office that she doesn't mean to upset me, but it could either be enlarged due to ongoing infection, or given my history could point to metastasis. I told her that previously, when I was younger, I would avoid going to the doctor when they found something wrong that needed to be treated, but having gone through my cancer, I am reformed and I believe avoiding the situation is not a solution. I have met others around me that live by my old ways and I try to tell them it will only make things worse in the long run. Heck... I went around with a limp for almost a year before I got my leg checked out and I found out I had osteosarcoma. Had I continued to put that off, I could have easily died as a result due to a pathological fracture. By the time of diagnosis, my tumor had hollowed-out my upper tibia. Similarly, if the spleen is an issue, having an enlarged spleen puts me at risk of it rupturing and bleeding internally, or in the case of cancer, the sooner it's treated the better. I had already told my slew of specialists during that time of the finding, but it was never pursued. The ongoing anemia could be the result of either my kidney damage, or from the spleen if it's diseased. But, on a brighter note, the new infectious disease will also be following up on that. I think I found the radiological report that lists its upper limit.