Day 4

Sorry I missed yesterday’s post so I’ll try to be brief with just updates as to my progress of where I am at.

Swedish ICU contacted me early in the morning to follow up on my stay and how I was doing. Usually all hospitals do this. But the calls are just brief 5-10 minutes.

This call was different. The nurse was so kind, and caring. She started out by making sure I was making positive progress. She made sure that I had acquired all my discharge medications, to which I told her insurance is still holding out on the posaconazole, and that I haven’t heart back from anyone on the status of it.

She then started to ask me about if I had a follow up with Dr Chauhan, to which I do on the 18th.

She then asked probably one of the questions I’ve never heard asked before, “How are YOU doing?” It took me 5 minutes to process the question, so I just let everything out. I spent the next 30 minutes explaining how I felt about the ER encounter, surgery, the ICU admission. Everything end to end.

It took Swedish ER 3 hours to get me from the front desk, to surgery. I explained to her when I was sitting at the intake desk at Swedish, that I immediately told them of concerns of Sepsis and/or a clot. To which I was told that I didn’t “qualify” for sepsis. I think the whole clot thing was just in one ear and out the other.

I went on to tell her how so much time was wasted because my concerns were literally ignored. And that I felt like I was being treated like every other ER visit before, “Oh shit this guy again” I told her that’s the vibe I’ve always gotten from Swedish ER since 2021. Ever since Dr Eison fucked my record with his false claims of munchausens.

I then told her about the first hour. That I told the staff that I have a port. They are more than welcome to use it. Shit I even offered to give up my emergency Huber needle I carry with me at all times, I felt that it was justified to offer it up just so we can speed this process up. they could have saved so much time but just accessing my port to start labs, instead I was met with the excuse of “it’s ER policy we can’t”. To which I said bullshit, the charge nurse can, and it’s been done before.

The PA that was sent in right as I got to the first room, felt like she was out of her league. I quickly explained the fact my WBC last Wednesday was 16.1, and that most likely it’s more elevated just based on how I was feeling. I told her about the surgery, the cultures, my immune deficiency, and the fact that I’ve had clots in the past.

After telling her all this I re-iterated the same thing to her of my concerns of sepsis and/or a clot. She then straight up asked me what labs to run, at this point the asshole that’s deep inside me came out. Like a Jekyl/Hyde transformation, that happened subconsciously. I turned to my wife and looked at her as it’s my usual signal to her that I’m about to be “real”. It’s a subtle cue we use so that she can backup what I say.

I then turned to the PA and said, “Well I’m no doctor, I would expect you being in the ER to know what labs to run for suspected sepsis or clots. With that being said, you need to order a CBC, CNP, Venous Lactate, High Sensitivity Troponin, and D-Dimer.” I then told her that I have a port, and to save time, they should just access my port. I asked my wife to get my Huber needle out. She declined to use it. Then the next fucked thing came out of her mouth. “I don’t think I can run a lactate on you, I’ll have to get permission. I’ve gotten in trouble before for ordering it”. After hearing this I looked straight at my wife in disgust, we can communicate just with look. It’s a skill we’ve cultured over the years.

I turned back to the PA and told her that my lactate is always high. I almost bet you if you run it, I’ll be hearing the sepsis alert on the loudspeakers when my WBC/lactate results. I wasn’t wrong.

The nurses spent 40 minutes attempting to get a single IV placed. They tried my left arm AC veins first. Told the nurse those collapse, jump, move, basically they don’t work. They could try one on the backside of my forearm, or the top of my hand is the best place. Since I was possibly going to get a CTA, they require an IV 2” below the wrist.

The next hour was spent determining what to do. Again. Not listening to me, not keeping to the “time is critical” component of this whole thing.

Once everything resulted, and I moved to 2 different rooms, the speed of which they moved increased exponentially, and eventually got me to the cath lab.

After telling the nurse all this on the phone it was dead silence. I thought for maybe a second I lost her. “I am so sorry, truly I am”

I then apologized for taking too much of her time, but then she said, “no, this is absolutely what I need to hear”. “My main purpose is to make sure you are doing ok, but secondly, I want to know how all this went”

With that, I then began to tell her from 2018 till now. How I got here. The amount of shit I’ve had to eat. I even told her to open my hospitalization record Dec 2021. When I was hospitalized. She read the comments, and I asked her the simple question “How is this fair?”

She replied “It’s not”. I then finally told her of the PTSD I’ve gotten from everything since 2021. Being denied care by key doctors. Continued support of this false narrative that was created by Dr Eison and the hospitalist that I was crazy.

Then told her that this is how every immunocompromised patient is treated in the American medical system. She agreed. She even offered up that I am not the first to say this. That she’s had other patients whom have had CVID say this.

I told her how I had to learn to how I had to become my own GP. Learning things I would expect doctors to know. I then told her that doctors were upset and offended that I would try talking to them as a doctor, because talking to them as a patient wasn’t working. About how I had to learn to advocate for myself.

She asked me about my support system. I told her to what respect? CVID specifically. I then told her about my efforts running the discord. Becoming a patient advocate with Pfizer. She was blown away. “It’s amazing that you are capable of this after everything you’ve gone through” she offered.

The call what usually lasted 10 minutes tops lasted 45 minutes. It felt good to give them my honest feedback. Hopefully it just improves the experience for all patients at Swedish. All I can do is try.

During that call, infectious disease tried to reach out to me. I knew it could wait. That call was more important. As I looked at the voicemail, I expected bad news. It was. Insurance still playing games with the posaconazole. However, an alternative could be used. Itraconazole. The same antifungal Dr Lurcott put me on in 2022. It did help, but being in the environment, I just reversed after being on it for 3 months.

As I walked back into the hotel, I got an email from the property with the post remediation mold results, you can see my response in my previous blog post.

I texted Anies as I got into bed, telling her that to not bring anything further to the hotel, that we would be returning to the apartment. I was sort of excited to message her that, but at the same time dreading the fact I’ll be going back to the place that has directly contributed to my severe health issues, but at the same time, everyone else that lives here.

I spent the rest of the afternoon just sleeping. The waves of exhaustion kept hitting me. I got a good 2 hour nap in. I woke up just feeling just as tired as I was when I laid down. I told myself at this point “this will get better”.

I’ve finally found the bottom of the stairs. The analogy I’ve used over the years how to explain to people how I feel. How I would think after this procedure, or this medication that maybe I found the bottom. To just stand up and get kicked down the next set of stairs.

The silver lining in all of this, is that I’ve gotten the answers to what has been plaguing me since 2009. The immune deficiency, the infection. Sadly me having to literally walk away from my toxic family, for good. No turning back. Since my mother’s death, it only got worse. I had to remove that from my life.

It took a heart attack to get the proper attention I’ve needed since 2018. The fucked part being that had they just listened, and followed the treatment I wanted, it wouldn’t have gotten this bad.

This picture was taken at UC Health, doctors took this as a psychological thing. Sent me therapists to talk the infection out of my head.

Embarrassingly enough, was I wrong? No. This is exactly the treatment I am on now. And I’m improving. The doctors that are actively treating me now, are also listed on the board.

It’s just infuriating the amount of wasted time, and money I’ve had to spend getting to this point. As I told the nurse on the phone “I am the one who got penalized due to the lack of real doctors”.

Throughout the years, my opinion has been if your education came from University of Colorado, you can’t care for me. I swear it’s how they are taught in school. Every doctor that’s interfered with my recovery, treatment, whichever way you want to call it, has come from there. I’ve done a good job removing them from the equation of my treatment going forward.

We left the hotel last night around 6. It felt good to get out of there. We got everything home, Anies did all the lifting. I just moved my body home. As I walked in, I put Hades down, and let him out of the carrier. He seemed to be really happy to be home. Running around and meowing.

The alarm on my phone went off for time for Ceftriaxone. I got into the bathroom, and used my backup stash of saline flushes, and alcohol pads, and started it.

I immediately went to the wall where the repairs were done. It was too dark out to see the outside part, I just wanted to see what they did that day I couldn’t see the angle where the pet cam Sauron was pointed. The wall previously had several stress fractures, and cracks. Just from the building settling, but it was pretty bad before. It went from the window all the way to the ceiling in a zigzag fashion. When I walked in, I immediately could smell paint.

As I examined the wall, the cracks were gone. I could see the new paint. It was unclear if they replaced the drywall. I’m going to just assume they didn’t. They just filled the cracks, and probably used Kilz paint.

At this point, Anies was carrying everything in. I tried to help as much as I could unpacking things. As time went on, the waves of exhaustion forced me to the couch. I was so tired. Long day. Excitement of coming home.

9pm hit, and it’s time for Vancomycin. It takes 2 hours to infuse. So I put on Oppenheimer, and just watched. I love this movie. I can relate to him in so many ways it’s not even funny.

As 11pm came, I got up to take an ambien, and headed to bed. As I walked into the bedroom, the unfortunate replay of last Monday hit me right in the face. My anxiety, and sadness hit me hard. I told Anies as I laid down, “I didn’t think I’d be back”. The primary thought I had when I was at the ICU. The fear of not going home.

I sent a quick email off to the property, that we returned. I just need to maintain transparency throughout this entire process with the apartment.

Hopefully they take my email serious, and just do what I ask. I hope 17-306 has better environmental results than here. This apartment in my mind is cursed, and I don’t want to be here.