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Bed-Side Update No. 1

I know this is my ninth day in the hospital without an update, so what's going on? Well it's a long story and I'll try to offer you an outline of what brought us to this moment and the primary factor that has prevented me from providing updates. It's one noun, one syllable, all encompassing term, and that is: PAIN


Pain has encompassed/shaped all aspects of my experience from before I underwent the initial amputation on August 18th, with my knee severally infected at that point, to having my leg amputated. To only a few days later undergoing an additional surgery, which was comprised of TMR (targeted muscle re-innervation), replacing the antibiotic nail. another deep bone biopsy, TMR, then closure of the wound. For this surgery, I was placed into the prone position. I was not aware of any of this because I was "put to sleep" and intubated prior to them placing me in the prone position. It was confusing coming out of that second surgery wondering if the swelling, numbness, inability to feel, inability to swallow and in some instances pain were the result of holding this position for five hours, rather than the epidural. Beside that, the epidural was placed incorrectly and someone by the name of Ian Holmen, a resident would soon become the arch-nemesis to the efforts of managing my pain effectively out of this surgery. Given the whole pain management plan swiftly transitioned from conversational and helpful changes to literally a day and a half after surgery rapid reductions in the dosing of my PCA and a forceful transitioning onto orals. I have never in my life ever experienced such treatment. Typically, when I have been on a PCA in the past, it has remained available to me for 2-3 days post surgery before any talks of lowering the dose were mentioned. As a matter of fact, in most instances, there was an increase in titration to achieve satisfactory analgesia.

In the name of spite...

At one point, that Ian fella even sinked an addiction doctor on me. Why? Because of a dose escalation to my orals right after surgery that I didn't ask for, and furthermore resisted. And because of this, they can label me as having a problem with my meds due to the dose increase of their choosing. Basically, less than 12 hours out from my second surgery - because they forcefully doubled my amount of breakthrough orals, they figure there is no legitimate reason that I should be utilizing the PCA regularly coming out of another painful surgery. Thus, as a result, they tapered me down forcefully from August 25th through August 28th - halving the available dose of my PCA each time. Next, they forcefully transitioned me off of the PCA onto 1 mg PRN injection (from my nurse), then to every two hours before it was cut again by half each day, until (as of this update on 9/5/2022) they have me completely off of it. The pain doctor that came in this morning was a complete asshole. I was supposed to be reduced to 0.2 mg, but I agreed that I would try discontinuing it and see how things go - but asked if I could get one final dose in. He agreed to put the other in at 8AM so I could. Unfortunately, pain department is lying again and between him and the nursing staff they avoided this whole topic and he went ahead and put in the order 20 minutes after discussing the plan with me. Moreover, that Ian guy was problematic since day 1. I met him in pre-op on the day of my surgery and only offered nerve blocks while denying me an epidural. At that point in the chronicity of ongoing health issues, I had enough of his arbitrary gatekeeping and excuse making and verbally lost it with him. While I apologized to him immediately about it and my Mom tactfully asked for his supervisor, I thought at first we had gotten off on the wrong foot and since we had a working relationship up until/through the second surgery - let bygones be bygones. Instead, he has sought to punish me and besmirch my name, which is what I think started the issues upon waking up from the second surgery.

Then, later that week: out of the blue, I received a follow-up and self-reaffirming call from the surgeon regarding post-second surgery pain

Dr. Greyson called on Saturday and I spoke with him for 7 minutes. He apologized he hadn’t gotten back to me yesterday because he was teaching. I told him, no problem. I told him that I heard everything related to the surgery went well, but when I got upstairs I was dealing with issues of the prone positioning and that I had recovered from most of that I told him, that everything has been great, you guys (surgeons), nursing staff, etc. however, pain management has been inadequate. And the past five days sorry, I’m about to cry have been living hell. Everything was fine up until coming out of the second surgery. Out of the second surgery they expected I would wean myself off of the PCA and in my past experiences, normally nothing would be changed/decreased fora day or two, before having that conversation. Unfortunately, we haven’t been having that conversation. They just keep reducing my dose and I don’t know why. It’s the one experience that mars an otherwise perfect experience here at this hospital. And since maintaining pain levels are so critical to the experience that he has been ruinous. Anyways, I told him I am continuing to heal and I’m still going to get up and do PT, it’s just that that my pain hasn’t been managed coming out of that last surgery. He reaffirmed that was important feedback and that he would let the pain team know. I told him, I’d appreciate it if you did get in touch with them, just so they know about the pain not being made up. He reassured me that the pain coming out from that last surgery wasn’t made up and that he was sorry. So anyways, in a roundabout way, it sounds like he is reaching out to the pain team. Whether they are willing to listen to him, or not,. He’s the consultant and so typically that’s left up to Dr. Stoneback and the team, but that he would put in his two cents. I also told him, since he spoke to my Mom at length after the surgery that he was meticulous and both my Mom and I were both seriously impressed that although this surgery will initially put me in greater level of pain, it will solve a lot of phantom limb pain that would otherwise plague the rest of my life and for that reason, we are indented to him. He assured me the pain will get better over the course of the next couple of weeks and that my pain was not “made up” and that this surgery was painful and I could genuinely tell, or I’d like to believe he was truly sorry that the pain team wasn’t managing my pain adequately.