Port Placed and Continued Misery

As much as I wanted to be getting better and recovering and returning to work, I don’t think that’s going to happen. I’m supposed to be back 8/31, but after this week, I don’t think that’s going to happen.

First things first, port was successfully placed in my right shoulder on Monday. Procedure itself went ok. Of course they didn’t use enough versed or fentanyl, I can recall the entire surgery. Start to finish. For starters, infectious disease ordered Vancomycin as a premed prior to the port being placed. But when I got to pre-op, of course they didn’t have it ready. We sat there in pre-op until 9:30am and the vancomycin finally showed up. Only thing with vancomycin is tho, is you can’t just push it in and be done. This has to be infused over an hour and a half.

So they started the Vancomycin, then wheeled me off to the OR. Where I literally sat in this room where it had to be at most 55 degrees. People would come and go but really I just sat there staring at things. After an hour, consents were finally signed and the surgeon met me. Asked me a barrage of questions, but really the one I didn’t like was “why are you getting a port placed, and why is this necessary”. I told him why, but really I wanted to be a complete asshole and tell him talk to my immunologist. When he started to ask me about the procedure I asked him that they need to give me more drugs than usual, and it would be great if they could give me some ketamine. Then he started throwing attitude.

Shouldn’t you just listen and make the patient feel comfortable? Nah. I then told him for when he does the lidocaine, he NEEDS to go slow and not just rocket it in. I signed a form and he walked away.

Whatever

I then got onto the table and was strapped in / positioned for the procedure. They did the usual chloraprep wash and sterile drape. But then everyone left the room. I sat in silence for another 30 minutes. Nobody told me what’s going on. So of course my anxiety at this point is through the roof. I asked for the versed early, but that fell on deaf ears.

Then some random doctor comes in and starts talking to me through the sterile drape. For those of you who don’t know. My face is covered, I can’t see whoever the fuck is there. I asked him to come talk to me under the drape, and it was like I was asking him to valet my car. Maybe these people are just having a bad day. Who knows. He finally walked over and told me that the reason why we are waiting, is because the vancomycin must be finished prior to the procedure. Which is fine. I understood. I asked him for some versed, and he called the lady in and they finally gave me “some”. I’m pretty sure she just pushed in saline. It did nothing.

Another 20 minutes and it sounded like I had 20 people in the room. At this point my anxiety is through the roof. Finally. They started to push the versed and fentanyl. I felt it, but it was like a micro dose. I was awake/aware the entire time. Typically you get a feeling of being where you are, but you just aren’t there. I kept asking for more, but then they said “we’ve given you the maximum”.

Bullshit

The port was placed no problem outside the anesthesia issues. It works. But Jesus it hurts. Feels like someone punched a hole through my shoulder.

The past 2 days, Ive been sleeping on the couch. That way I can just lay in front of a fan and try to feel “comfortable”.

The next day I had to wake up early, it’s IVIG day. I packed the laptop, and headed to the infusion center. Infusion started around 9am, but God did I feel like shit. The night sweats are back. The general feeling of “I’m sick” is coming back.

Since I’m resuming IVIG, they couldn’t use the rate I was at previously. So I had to do this over 4 hours. Prior to starting, they pulled labs. But I didn’t think anything of it.

The infusion was fine. No issues. No side effects. I’m fine. But I was just tired. But I started to feel the energy that I haven’t had for a very long time. When I tried to leave, my blood pressure was somewhat high. I told the nurse that I JUST goty port placed. It’s pain. That’s why it’s high. Plus we just resumed IVIG, I’ll be fine. But theyade me wait for 45 minutes. My patience is just gone from this shit. Finally they saw my blood pressure dropped and let me leave.

I got home and just fell asleep. I needed it. But I woke up later just feeling like shit again. Pain starting to go up again and then it dawned on me. It was the Vancomycin. It’s starting to not work. I had an appointment to see the actual infectious disease doctor tomorrow so I am absolutely convinced this is an infection.

I woke up this morning feeling even worse than I did yesterday. Just wiped out. Exhausted. Around 8:30am, the LabCorp results came in. WBC is back up. Neutrophils are going back up. Everything is looking like it’s infection. No. This isn’t because of the port placement. This is real.

So I spent the morning collecting and printing the labs and the CT results so that when I go into see Dr. Kaufmann, I have all the hard data to put in front of her. I got my PICC dressing changed, but of course when they went to pull blood, PICC isn’t working.

For fucks sake.

So I had to spend an extra hour waiting for the TPA (clot buster) meds to work. While that was placed, I sat and talked to Dr. Kaufmann and told her where we were at and how I felt. I told her that I’m being stone walled by Hepworths office. That surgery isn’t until October 25th. Then I started to tell her about the abscesses and pus that constantly keeps coming out.

The last time I was here to see her, I spent a solid 3 hours printing out the past 4 years of culture results from both sinus surgeries, and all the stuff Schleve did. But there is a recurring theme.

Staph Epidermidis. Yes. This is commensal bacteria that everyone has, but every culture taken showed heavy growth. But it was ignored. Every time.

So then I told her about the Vancomycin. How I felt after it, and most importantly how feeling now. The previous appointment we talked about doing either dalbavacin or vancomycin. But she opted to put me on augmentin and doxycycline. Which really, it wasn’t doing shit. After she reviewed all my labs, she agreed to do dalbavacin. Officially and FINALLY diagnosed with a Staph colonization.

But of course insurance needs a new referral. They have it. They can mix it and give it to me. But I need the referrals from my GP so that insurance will approve it. So after the nurse told me that, I immediately called the appointment line. Leaving a message on the nurses line will just fall on deaf ears. The receptionist picked up and told me that I had to leave a message, but I pushed back immediately. I told her that this cannot wait, and that they needed to fax over the 2 referrals so that I can satisfy insurances bullshit.

To my surprise, she listened. She took everything down. And had everything signed/faxed within 10 minutes. I walked back in, and now the pharmacy cannot get a hold of Anthems line to get the auth complete.

Cutoff for infusions is 3:30. Almost made it. The nurse came out and told me that I’ll have to come back at 8am tomorrow to do the infusion.

Fine.

Maybe now I can get back to life. Just maybe. The light at the end of this extremely long tunnel.