Pre-Surgical Jitters

Tomorrow is the day. The day I’ve tried avoiding since 2020. If you haven’t been following closely, or if it’s been awhile I’ll catch you up.

In 2020 my veins started calling it quits, and as we all know, COVID came. I switched to SCIG. What I thought would be better for me. Turns out it just delayed the inevitable.

I still have the PICC line. But it’s only temporary. 3 weeks ago, infectious disease wanted to pull it. But the week prior, I talked to Sarid my immunologist and waved the white flag.

We have entertained the idea of putting me back on IVIG for awhile now. But since I had the PICC, it just made things easier.

So then I told infectious disease to maintain it until I transitioned back to IVIG. Step 1, inevitably, is to place a portocath. Which is permanent for the most part. Most patients that get one have cancer. It’s the way chemo is delivered. But it can also be used for people whom have the same issues I do. Constant IV’s.

So tomorrow I’ll have it done at 10am, then Tuesday will be 35g of Octagam 10%. 3 weeks after, then 45g. If I tolerate it (fingers crossed), Sarid will move me to home care.

Maybe this coming week, Klarisana calls and gives me the thumbs up for ketamine. I’m just waiting for pain management to allow it along side the Dilaudid. But the real goal there is to go off all opiates by December. The treatment would be 60mg (double what I was getting in the hospital) every other day for 3 weeks. Then after, monthly infusions. It’s unclear if BCBS/Anthem will cover it, but I’m at the point of not caring.

The 3 week barrage will cost $2000. Then $300 per month. I hope it’s covered. It would help immensely.

But with every procedure, my anxiety is pretty high. Tomorrow will be twilight/conscious sedation. They just push versed and fentanyl. But I’m going to ask them for ketamine. Hopefully by the next IVIG infusion, I can have the PICC line pulled, and switch to the port.

I talked to Nick at the pharmacy and already told him I want myself and Aggie to be certified with using it.

So here’s hoping this next month I can freeze the infection until Oct 25th when Hepworth does the big surgery.

That can’t come soon enough.