Shunted, Pumped and now Ported

I’m all over the place and I still have a lot of things to catch up on that I haven’t discussed with the diagnosis and medical mysteries. So let’s just do a summary of April and hope there isn’t more to be found this month.

I have started IVIG (will do a longer update about what and why and how) and continued the run of nurses pissed odd about my veins. So it was decided I could finally get a portacath (port).

Most people know a port when talking about cancer. It’s a device implanted into the chest with tubing going into the main vein of the heart (superior vena cava). It helps by-pass multiple IVs and is used for some harsher meds.

Anatomical drawing of a Portacath

There are a few veins they can use, and when I had PICCS (like a short-term version of a port), they used the subclavian vein. However, with my thoracic outlet issues that caused problems, I was happy they picked the internal jugular.

I was excited to get one due to the constant issues with IVs I have been having (waking up with IVs in feet). However, cost was an issue as with all of medicine. Luckily I knew I should chat to the nurses and one took it on as a mission to help me. If I had done it out patient it would have cost me a few thousand dollars. We got it done inpatient and my private health paid up. Thank you nurses!

We prepped my right side, as that is the common side, as you can just slide right into the vena cava. As my surgeon was doing his last scans while I was being hidden under the drape, I heard him say, “What’s that?”. Which is EXACTLY what you want to hear from a doctor. Luckily, I knew what THAT likely was - my VP shunt tubing. As we didn’t want to create a superhighway for infection between my brain and heart, we decided to go left.

While I would have liked the right side because all my implants (VP shunt and Intrathecal pump) are on my right side, I can’t argue the logic of avoiding a portal of infection doom.

This was done under twilight sedation and local anaesthetic. The local was the most painful past, and the rest was just a tugging feeling. We started with lower sedation because my BP was low (I blame the positioning of the BP cuff). Then we spent the entire time with the doctor saying “maybe a bit more, just a little more sedation, and a little more sedation” until I was chatting about politics….so I’m not sure the sedation did anything to my EDS body. Which wasn’t a huge problem, seeing the worst part was the short stinging of the local.

My surgical site of my port with its implant friends

Healing Port

 The left side was right after, and the right was about a week later. I have my stitches still in for another week. The left picture also shows X-rays of the other implanted devices.

So now I have three medical devices (Pumpy 3.0, Shunty 2.0 and Porty 1.0) (each number is which version I’m up to as they often need replacing with age). I hope that when skynet or AI takes over, they realise I’m almost half metal with these and my metal parts.

I have a few more tests coming up and, as always, a LOT of organising doctors to talk to each other and get stuff done (like fix this CSF leak that’s been going on who knows how long).

So hopefully my ADHD will let me catch up more. I have a few started drafts to get out. Thanks to whoever in the ether is listening.