Life Post-evacuation (Marshall Fire) and a new infection

Wow... it has been a while since I have journaled. The best place probably to start is with the Louisville evacuations that occurred last week.

Dec 30th 2021: In the morning, I had an appointment with my new nephrologist. He was quick to point out my anemia and inflammatory markers from the infection. It was a good first impression with this specialist. Side note: fast forward to Jan 3rd, their office called to notify me I should start supplementing with iron due to the anemia, but my previous nephrologist decided to not treat it in Oct because apparently bacterial infections can feed on the the iron, and furthermore I think it is better treated with IV iron, rather than oral iron (had I had been treated in the past).

When I got home, soon after I had a follow-up tele-health appointment with my infectious disease doctor. During this appointment, she rather abruptly notified me the cultures from my most recent surgery that I had an untreated e. coli. infection, in addition to the staph epi. infection. Unfortunately, the particular IV antibiotic they were using to treat the staph epi. only treats gram-positive, and not gram-negative, such as e. coli. This could easily explain why my incision wasn't healing, in addition to the anemia and it being the twelfth surgery cutting into the same scar tissue. By my approximation, around the three week mark the unexplained oscillating fevers and lymphedema corresponds with this new infection. So in all likelihood and actuality this means this infection has been untreated since around December 10th.

She scheduled for me to have my first infusion down in Denver within less than two hours. Of course, this corresponded directly with the fire and evacuation starting in Louisville. Around my Mom's insistence (thankfully), and considering HWY-36 had been closed down roughly half-way to I-25, the traffic was backed up and even if I had persisted with the original plan of making it down there, the brake was abruptly put on with those plans and I came home. Good thing I did because by that point the fire department was going door to door for mandatory evacuations. My Mom and I successfully fled Louisville to Longmont, but with all of the evacuations, it took an hour and a half to two hours to make it to Longmont. By that time we stopped at Whole Foods and grabbed some food then started looking for hotel rooms. It wasn't surprising it was hard to find one, but we found one at the Hilton Garden Inn in Boulder, where we have been staying the past four nights, up until today.

Even though my infusion had been postponed to the following day down in Denver, through a very unpleasant phone call, my Mom was able to get the orders switched to Longmont United Hospital Infusion Center, where I received my first dose. I had some motion sickness on the way home from the infusion, but otherwise it went really well. The people there were super-accommodating given the last minute arrangement and even stayed an hour late to ensure I was taken care of, in addition to providing me replacement tagaderm (o-site dressing and biopatches, gloves and alcohol wipes so I can change and dress the drain in my leg; by that point that area was starting to look really nasty and infected). Since they didn't have orders, they couldn't touch it, but they were kind and sensible enough to give me the tools so I could treat it myself. 

January 1st: we decided to come back by the house and place space heaters in the basement on high since electricity and been restored, but not gas and also to grab my new antibiotics that had been delivered on the 31st, but only got access to on the 1st, since the national guard wouldn't permit anyone into Louisville until the 1st (and only in select areas). When we got back to the hotel, I administered my second dose. They come in this really cool elastomer balls, that eliminates the need for an IV pole for the hour long infusion. I have seen/used them before for previous leg infections, when vacomyacin was indicated.

Otherwise, that pretty much brings us to current up to today. We basically hung around our hotel room for the most part and watched movies with the heat cranked up. My Mom's cat, Lynxie (or Lynxie Girl) as we like to call her, really had a great time with us. Reality set in when we woke up today though because we had to be be back for a new washer/dryer delivery, in addition to my weekly home health nurse appointment, and to have our gas relit. Regarding the latter, it has been a big ordeal with Xcel. They told us they would notify us 60 minutes prior to coming over for a relight so we could stay a the hotel, but be present for the relight. Well that never happened. Instead, we missed them 4 times and waited a good portion of the day today with no ETA on getting things relit. I was beginning to reach the point where I was going to go around back, with a fused leg, on crutches in the snow and ice and turn the gas back on myself, but was afraid doing so, given I nearly fell 3 times and braced myself on my bad leg due to the slick floors in the lobby. Once, from their regular mopping and two other times due to the water that had been tracked in.

What at first seemed like an unfortunate call to a plumber for a leaky drain, transformed into a God-send. This gentleman came by and not only fixed the problem with the drain in one of the bathrooms, he also relit our boiler and hot water heater. The real shocker: he didn't even charge us a cent for doing this! What an angel because now, where it's 6:30PM and we've been home for 7 hours, in the cold... things are finally beginning to thaw and we're starting to feel like it's home again in here. Not to complain though because we both realize others have had it far worse, but who knows if it wasn't for this man's help how long we would have waited, or if they were coming tomorrow instead. When we got inside, the thermostat read 51ºF, but personally it felt colder that that. In the upstairs bathroom, we could actually see our breath in the air.

Last but not least, my nurse did come by and as did our washer and dryer delivery. There are a ton of unsung heroes that should be mentioned here, including the Hilton Garden Inn in Boulder only charging us $99 per night, free-parking and allowed us to keep renewing our room on a day-by-day basis, usually last-minute notice, all of the friends and family that reached out to me personally on FB to ensure my safety and well-being asking if they could help in some way, my nurse for coming into our home in these cold temperatures to tend to my PICC/obtain blood work/change my dressing/and offer ahead of time to run us errands, the Longmont Hospital, the plumber, our neighbor Andy, our extended family for reaching out and also many friends on FB (a subset for which I hadn't spoken with in a very long time, one of which was a co-administrator for one of my previous websites offering to help debug some code to bring the site live, in archive mode, yet again, etc.). Additionally, to my PI Jerry and lab peeps for supporting me through this difficult time and helping to ensure I can keep my position at lab open and continue taking sick/vacation and if necessary short-term disability. And of course, all of the firefighters who risked their life, police officers that worked overnight, and everyone that had a hand in helping to limit the damage to life and property. These are our real heroes.

Things could be way worse and we must remind yourself of that, even when finances are tough through unexpected costs of replacing a sewer, several appliances and my ongoing health issues - just to name a few. The outpouring of love and care reminds me (really us) that even in the current world we live in, where things begin to feel impersonal and dire at times, in the middle of COVID-19, in the middle of a chronic infection (much thanks to my leg specialist and PM specialist), and loss of family members (due to unrelated matters years ago) that there are still truly remarkable people out there that help lessen the load - just a bit and remind us that life is very much truly worth living. 

Not to push my beliefs onto my readers, but truly, God is good. This past year (well really the past 6-7 years, truly) have really sucked for me. But especially this past year with ongoing infection and my physiology fighting to stay alive, even amid a serious ongoing infection. I'll save any comments about 2022 because it seems to never work out hoping that next year will be better than the previous, but I will say I hope/pray that things start to settle down for my Mom and I. We've been through so much, for so long, sometimes I just don't know how we can keep going on like this. But anytime someone takes the time to stop, listen, perform a random act of kindness, or a miracle happens (which I can attest is definitely the case with timing; things happen for a reason sort of vibe), I rewind, let those other things go and remind myself just how grateful we are to have one another, to have a house, and to be alive. However, through this ongoing struggle that is life, I feel like God has always guided and helped direct me towards the help of others, always made things work amazing when it has come to timing (especially coming back for my Mom, rather than going to my appointment; and still found a way for me to get my new antibiotic) and for that I am truly blessed. I am very fortunate for each and everything I have and I sometimes have to take a step back and remind myself about that, through all the struggles as they come up in life because they begin to accumulate and wear on a person. In that regard my Mom is my hero because she continues to bear a lot of this and she is still here with me. You cannot put a price on that.

To anyone out there going through the world of hurt of losing everything to this fire... I am absent of words to convey to express my empathy, sorrow, and morning for you and your kin. What happened here in Louisville is truly unprecedented. It is is always possible to rebuild and start again, no matter how difficult, but we can never replace relationships, or people. Our love for one another and having one another is literally the most important thing in life. This fire could have easily burned down this entire city and I hope you will decide through faith to not let it break you, but rather strengthen you. But that notion doesn't take away from the fact that there are a lot of people in a great deal of hurt right now, not sure when the pain will end and are disillusioned how to pick up the pieces and move on. One lesson I've learned that I just wanted to share is about disappointment/expectations. Often times we have little control over what happens to us, but we have plenty of control over the way in which we react to it. With that, we need to understand the wisdom that comes with knowing what we have control over, while letting go of control over things that we are powerless in affecting a different outcome.