Most of the time, I wish I could “abort” this body and hop into another one. But in full transparency, I just wanted to make that awful pun. Nevertheless, it’s my journey, and the hope is that some good will come out of this and I will be able to make a positive impact on others down the road.
On July 11th, I had a port placed. My doctors had been discussing me having a port or a PICC line placed for months so I could receive IV fluids more frequently and potentially begin IVIG.
Since March, I have been receiving fluids twice weekly. I have very small veins that like to roll, so access has always been difficult, but recently IV access was becoming near impossible. Some weeks I would get stuck countless times to no avail, or the vein would blow almost immediately.
As I did not want another medical device coming out of my body, I delayed this surgery for a while. However, my visceral hyperalgesia flared after my last hospital stay which made pushing water through the GJ even more painful. As a result, I became pretty dehydrated which made it even hard to access my veins. The dehydration intensified my vertigo and constant headache, so we decided to go forward with the port placement. I chose to get a port instead of a PICC line because the infection rate is lower for ports, and I wanted the option to be de-accessed. I was definitely nervous about having my neck cut into again, but I’m proud of myself for pushing through. Gratefully, the port placement surgery went smoothly!
For me, the post-op pain was not bad. There was a good bit of soreness around the site with lots of tingling. And there were neck spasms for a couple of days, but it was a lot easier than I had expected. The worst pain I experienced was a horrible migraine from the stimulus of the hospital. However, everyone’s experience with this procedure is unique.
Before the surgery, I asked the interventional radiologist to mark where my neck brace hits my neck to avoid any rubbing with the new PORT site. He indicated it would be tricky to navigate but would try. Unfortunately, my neck brace hits near the port site, which is very tender, so I haven’t been able to wear my hard collar.
So far, the port has been a good move for me! My hydration is a lot better which has reduced my vertigo and given me more energy. The plan is that I stay accessed from Tuesday morning – Friday afternoon. Getting the port accessed for the first time was nerve-racking, but it went better than I had imagined. I merely felt a big pinch and then pressure. Unfortunately, the lidocaine cream that is often used when accessing the port didn’t work for me and gave me a reaction. I remain nervous about the risk of infection since the port must be sterile. However, I am very excited to be able to practice sitting upright more often now that my vertigo has improved a bit.