Limbo

Since the end of May I’ve been in limbo. Yes. I got the mastoidectomy. Yes. Infectious disease did their part. I’m still waiting for surgery #2 that needs to happen yesterday.

At the tail end of June, I saw 2 oral surgeons who seemed reluctant that there was any need to do surgery. From what I’m feeling, they are wrong. I think Hepworth’s plan is right.

The plan is perform several procedures. First and foremost, sialendoscopy of all of my salivary glands. Again. Debriede my face, neck, and mouth of all the abscesses that just sit there. And finally debriede my jaw.

I’m not going to lie. This shit fucking HURTS. It’s probably the worst pain I’ve felt. We all know why this happened, but I’m not going to go into it.

Tomorrow I see pain management. I’m at the maximum for dilaudid currently. The only thing above this is fentanyl. Which kinda scares me. Yeah. I had it in the hospital, but the dosing is different with the patches. Since Monday, the pain has just been ramping up and up. And Hepworth wanted me to stop …. I don’t understand that logic. I guess I’ll see what he says tomorrow.

Yesterday I spoke with a ketamine clinic. I have an intake appointment in a week to decide if I can go on it. It helped in the hospital. I just want this shit to stop. Surgery just needs to happen. I’m just grabbing at straws to try to lessen this pain as this endless wait continues.

Today sucks. And I’m sure tomorrow will be worse. If I don’t hear from Hepworth by tomorrow, I’m going to text him direct. My appointment with infectious disease today went as expected. However, they are going to get ahold of Hepworth and start to push him for surgery / source control. We can’t just keep throwing antibiotics at this. It’s not gonna go away. I think the past year has proven that time and time again.

Next week I’m going to reach back out to Sarids office. The conversations I’ve had with him the past 2 visits has been going back to IVIG. I transitioned to SCIG during COVID to avoid the infusion center suckyness. But let’s be real. Since I switched, infections have gotten worse. Maybe it’s the product? Maybe IVIG is just better for me. So apart from going back to IVIG, I would get a portocath installed. This would allow me to become picc free, and wouldn’t need to have IV’s anymore. Since my veins hate them, I guess it’s time to just get this over with. I’ve been avoiding it, but the longer this goes, the more it just makes sense to go back.

So basically it will be 2 runs of IVIG through the picc line that I currently have. Just like last time, probably 10g doses each time, if I don’t get any crazy reactions (highly doubt it), then we will move to get the port placed. But instead of being jailed to the infusion center, it’s going to be done here at home.

I really hope surgery is soon. This pain is becoming unmanageable.