How I've been doing lately

I'd be remiss and/or lying to myself to not address the issue of the general lack of updates since I put this blog together.

As mentioned previously, this is due, in part, by the fact I have just been extremely busy. A combination of provider appointments, sleeping and in general - additional life stuff that has come up (one of many being the sewer went out).

Regardless, I am making the effort to put together a first post to this blog with the intention of not bringing us current (that is something I'll have to get to later), but rather to explain how I've been, what's been concerning me and how I have been managing to cope with these stresses. In order to be effective with this, I am really going to try my best to not go off on tangents on what has already happened.

Anyways, I had four appointments last week. Tuesday, one with my PT, who I hadn't seen in a while. He was generally empathetic and sympathetic to what I was going through - he himself knowing my ongoing issues, let alone having my leg fused. It was welcome to have his energy matching mine for the duration of the appointment. Wednesday, I had my PM appointment. She was actually very receptive to when I told her that the issues I have been experiencing pain-wise were on a level I hadn't experienced, or couldn't recall experiencing in a very long while (perhaps when I first had my prosthesis put in, but that was 16 years ago). Given this, I was overwhelmed by her level of compassion and response to altering my regimen to ensure post-surgically I was comfortable. Then finally, on Thursday, I had my infectious disease specialist appointment, followed by my leg specialist appointment. To my general surprise, the plan is to only have me on IV antibiotics for six weeks, followed by a two week break from them, at which time arthrocentisis (pulling fluid from my leg) will be performed and these specimens will be cultured to see if there is residual infection. Again, they have wrapped the metal rod that fused my two bones together with antibiotic-impregnated cement, in addition to a 6-week round of IV antibiotics (of which I am self-administering an injection daily). If the cultures come back clean, then I'll be discontinued from the antibiotics, but still must wait in totality 12-weeks until the follow-up surgery to re-insert a new endoprosthesis. Finally, I went an saw my leg specialist's PA to remove staples at 3-weeks post-surgery. While initially last week they offered to remove all of them, I wanted to wait. She removed all, but 3-4 in a trouble spot without much muscle/mostly skin. However, I have got to say since doing so my leg has been leaking non-stop with fluid. Moreover, there are some portions of my incision that refuse to heal shut and are straddling on being "full an open wounds". Additionally, in general, I am grateful for the increase in pain medication because since I have woken up from surgery, it's been hell. The constant leakage now seems to cause recurrent flareups in lymphedema and overall pain.

In general since surgery I have been unable to walk, but I get around alright on crutches. I limit the amount of time that I'm up, however, because otherwise my bandages quickly become drenched. My lymph nodes in the upper part of my leg seem to be flaring up correspondingly per some pain and slightly purulent drainage near the top of my 12-14 inch long incision. In general I am not pleased with how this is healing - quite frankly it's not healing up at all. If the plan is to discontinue antibiotics in a little over two weeks, I only feel confident discontinuing them once these incisions have fully healed. I don't know what's causing the delay in healing. However, I can tell you if after mentioning to both my infectious disease and leg specialist one more time about my concern about my lymph nodes that it falls on deaf ears, I will be calling in a favor from my oncologist to take a look into it. This is primarily to rule out my lymphnodes being clogged and hence not functioning and to get dark with you here, to look into possibly something more nefarious like lymphoma, etc. I have been dealing with chronic health issues for the past 6-7 years and now, my body's general inability to heal should draw into question the reason why. No matter how uncomfortable it is to broach this subject, given my history with having cancer (the reason for my leg reconstruction in the first place), it must be visited if these issues with healing don't abate.

So anyways, the moral of the story is I've been better. However, since changes have been made to my regimen has made it somewhat more manageable. On the other hand, it has almost been a full month of time I have taken off of work. While I am working some remotely, I partially don't have enough tasks to make this a full time thing, but additionally, the past couple days (non-consecutively), I have slept all day. I truly feel unwell.

So the plan is to go to my three doctors appointments next week for follow-up. For my leg specialist, I am going to impress that portion of my incision refuse to heal, and in some instances are starting to appear semi-purulent (and smell); for my pain specialist, explain that these modifications are really helping and explain how in some ways I'm still in the thick of this since I'm not healing, and finally to speak with the infectious disease specialist in addition to my leg doctor to let them know I really think it's pertinent to have my lymph nodes looked at. They have been continually inflamed and swollen over the course of this past year. I'm not sure if there are blockages, or something more concerning that should be looked at. Again, if these requests are ignored, I can just as easily take my oncologist up on her offer to "let me know you need anything that I can help you with."

She is an angel, basically best provider out there, always willing to help and has been helping me in various ways through energy and pain issues since my health issues started back in 2015. I know this is something she would gladly help me look into independently, whether that is putting pressure on my leg specialist, or consulting with them that she will be helping address the issue of my lymph nodes. I have already read there are non-surgical approaches they can take using dye, etc to see the flow of lymph. My deepest concern, given what I'm seeing is either a) something undetected is going on that is disease-modifying, b) we will go through all of this, having not taken a look at my lymph nodes; I will go through all of these surgeries only to end up with the same infection, untreated and wonder why. If both were to occur, that would really piss me off to have spent 1.5 years trying to recover from this only to find out I had undiagnosed lymphoma, or minimally that I have to go through with it all over again, again, and again until we finally put in the towel and amputation is the only option left to me. What's worse, is the longer this staph infection is inside my body, the greater the chance it can eventually become systemic and develop sepsis, with devastating consequences. 

It only takes watching 1-2 of those documentaries to understand how serious of a health issue I'm experiencing. Right now, I couldn't return to lab, if it was required of me, or even if I was dreaming that I could. Right now I am very disabled, I try to not take on the guilt of keeping my job under such conditions. Moreover, if my health issues of the past 6-7 years truly stem from this untreated infection, then you could understand how my body is tired, damage has already been done, but my body can only take so much before giving into the infection. It would suck to wake up intubated and having multiple limbs cleaved off.

At any rate, I will know more after next week's appointments and certainly once we trial discontinuation of antibiotics in roughly two weeks from now, followed by taking the sample. Beyond that, if I independently start experiencing fever, etc that prevents me from having my PICC line removed, then I'll continue on antibiotics from another 4-6 weeks (at least I imagine, at which time, they will trial me again). I would be lying if didn't tell you that this whole process feels like purgatory. It is hard to imagine that I'll be better by May - June of next year. I just feel fortunate, more than anything, to be in the position that I am with my job and hopefully they can weather through so I can keep my job and my health insurance, my Mom (who to a variable degree I can lean and rely on right now). Without either of those two things, things would be much darker for me and I honestly am not sure how I'd be at all able to cope. So I have to count myself lucky for all of the things I do have, and try to not worry and have trust that things will work out until I know otherwise. I can always be upset later.