Just a few items to report on, but mostly not much has changed since my last update

You would think in the past 10 days, I would have all sorts of news to report on. While I have a few updates to provide, it has been mostly in a state of "watch and wait" as far as my unhealed wound is concerned along with finishing out this antibiotic regimen, which looks like it will be early to mid-February until we enter the "cool down" period with the antibiotics and obtain cultures from leg aspirate.

Basically the past couple weeks, in ~4 day intervals my leg specialist has asked for me to report on the output on my drain. It has been mostly consistent in producing 20-30 mLs of fluid within a 24 hour period. While that number is mostly consistent, I imagine when I measure this latest 24 hour period this afternoon it might be closer to 15 mL, while also reporting that the incision around my leg has not closed shut and still leaking (some). So I'm not sure if there is another surgery on the horizon for me, or if she will want me to drive down there today. I know my specialist has voiced that she is avoiding taking me back into the operating room as much as possible, with the inferred message that if the fluid output doesn't abate (or the wound doesn't heal), that might be necessary. It has been a hold-off, watch and wait kind of strategy.

While the antibiotics seem to be helping and the difference is night and day, I have been still dealing with on and off more pain. Some days I'm better than others, but certainly things are much better with regards to complexion and ability to stand compared to before switching antibiotics. On the topic of the infectious disease specialist, I realize doctors are human (as much as we expect robotic perfection out of them). Having said that though, I'm finding myself upset and not trusting the course laid out by my infectious disease specialist. She is very hands off and her telling me, I know it sucks 4 more week of antibiotics... it goes a step beyond that when I went to her reporting of lymphedema, fevers, then constant drainage and she didn't even want to inspect my leg. These concerns were immediately defused by "it is impossible for you to get an infection while on antibiotics) and inquiring about switching antibiotics when starting this process over again in November: "it wasn't a failure of the antibiotic treatment, it was a failure of your prosthesis not being fully removed along with the biofilms". In addition to that, her staff are very rude and act put out by accommodating changed plans, especially in regard to the Marshall Fires (the fact I couldn't make it down there and to find a place closer where I could trial the new antibiotic). Then of course there was the mixup with the home injection pharmacy prescribing a whole week's worth of an antibiotic I was allergic to, their staff being mad at me about being bothered during the weekend, finally going in that following Tuesday and being told I needed to bring someone to the appointment so "we can pump you full of drugs and they can take you home" (with a hospital being right next door?! Anyways, you get the point. There is very little compassion/help. 

I could go on and on with a few other issues over the course of the past 10.5 years of having her as my specialist, but the bottom-line is I'm not impressed, nor am I confident that she is listening or following me closely enough, given she is out of the office more days during the week than she's in the office, and she tends to minimize what sometimes turn out to be valid concerns.

So collectively, I am going to consult with a new infectious disease doctor next Tuesday. I am not going to mention anything to her about it during my 1:45PM tele-health visit today. If she would have simply apologized to me and reaffirmed that she would follow my case more closely and not point the finger/scapegoat any wrongdoings to my leg doctor, I would consider giving her another chance. Instead, if this new provider in Boulder is willing and able to take my case and I get a feel for her approach (I'm sure she will avoid being unprofessional about commenting on my current ID doc), I would at least like to get a feel of her general philosophies, how closely she watches and follows up with her patients and most importantly, how well she listens to her patient's concerns. So I will have to let all of you know on Tuesday/Wednesday about it, next week.

Finally, I'm really anemic according to my nephrologist. He followed up with me regarding concerns about incorporating iron infusion treatment into my current ongoing infection. My previous nephrologist earlier this year told me she should treat me for the anemia, but felt that given bacteria can use the iron as an energy source to replicate, it would be a bad idea. After talking this over with my new nephrologist though, he allayed my fears and told me that: a) he would be watching me closely, b) that concern is only a concern if I have an infection that is out of control and if I'm febrile. I actually think treating the anemia would help my healing significantly. I also think hyperbaric oxygen therapy is an adjunct treatment I should also consider, especially if this wound isn't healing. Of course, the timeframe of this may shift if my leg specialist decides to pull me into the OR tomorrow, or sometime next week. All I know is this drain can't remain in my leg forever and a lower portion of my incision around my shin simply isn't healing. I can actually a sinus, externally, where two parts of skin won't marry up, they are just butted up together and not healing. This area also still has sutures, glue and some petroleum gauze over it.

Anyways, that mostly brings us current. I have started back with work, a bit, remotely. I am seeing if my boss has some additional tasks for me to take on to pad my hours a bit, so I am eating not as quickly away at my remaining PTO. However, this happens to be one of the busiest times of year for him. I agreed with him, given that is the case and things are a bit up in the air with me for the next couple weeks, it is fine if we need to delay that conversation for a couple weeks (or until he has the time to go over what the work entails). I am appreciative that I still have my job. I couldn't imagine the stress of not having an income and losing my current health insurance (given that I have ran through my deductible and out of pocket expenses until the end of June). I have been seeing my physical therapist, with mostly a focus on other parts of my body that are causing issues; while saving a bulk of my remaining appointments for what will hopefully be my last surgery (removing the fusion and putting in a new endoprosthesis).

At this point I don't know what the timeframe looks like, but given the untreated e. coli I was told by my current infectious disease specialist it would be at a minimum an additional 4 weeks on antibiotics. Given my incision hasn't healed and if the effusive drainage not abating, if that also means another surgery... which in turn means more antibiotics.

So yeah I have been going through a lot and hoping we can turn this around so I can get on the normal healing trajectory that most people experience after surgery. It's hard thinking about what I'll do if during the "cool-down" period with the antibiotics, or if I get far enough to have the new endoprosthesis to develop pain and inflammation past 2-3 week recovery point, given that would invariably mean I would probably have to start over anew: fusing my leg all over again, another 6 week course of antibiotics, along with another 6 weeks of waiting for my follow-up surgery. It is also an overwhelming prospect, that even best case scenario there is someway I can keep my job going up until September/October, when the grant money runs out, that I'll also be dealing with needing to find another job in the middle of being sick.

All I can do is take it one day at a time and give a lot of these issues to God. Right now, I think I should go through another surgery, rather than waiting (since we're running out of time until we hit the 12 week mark), along with addressing my anemia. We'll see if that's what plays out, or if things will be headed in a third direction with wound intervention and plans with the new infectious disease specialist. On one hand, if I go through switching specialists I might obtain a better outcome and on the other, it is immensely complicated switching providers in the middle of this treatment and the risks associated with doing so. It means a lot, like where my weekly blood draw results are sent will need to be changed, the home injection orders coming from a different doctor, my leg specialist switching her collaboration to a new doctor that's not part of the normal interdisciplinary team she works with and the new doctor obtaining all of my records and getting up to speed on my case and history. That's a lot.

If you are science-minded and don't mind some slightly graphic images of my wound 10 days ago, as to how it appears now, along with the discoloration in my foot that has since resolved, Click here