Getting a Port: 7 things I didn’t expect

A couple of months ago my infusion center nurses started to suggest a port. I have been getting poked 4-7 times every time I have bloodwork, a test or medication administered and they said this would make it easier. 

I was in and out of the hospital for the first part of February with an acute lupus flare. I have taken Saphnelo — and a lot of other medication — trying to calm lupus down for about 3 years. But with this most recent flare affecting my Central Nervous System, it’s time to start Cytoxan. My doctor said it’s the biggest med they have for lupus and it’s important to be aggressive with treatment.

A port is normally recommended with this type of medication but who knows? I may have opted for this anyway to make my lupus journey simpler!

I pictured a permanent tube hanging out of me and how complicated that would make my life but it turns out I was so wrong.

1) There are no loose  chords

I went to my port consultation on Friday and learned that the only time there will be a chord coming out will be during an IV.

The photos you may have seen online where there is a chord coming out is just part of the medication administration process. 

2) The port is covered by skin

Once everything heals up, the port will actually be completely covered by skin. Then my infusion nurse will feel the port for where to insert the needle to access the line. They will be able to draw labs and administer medication so much easier!

I believe they will be able to do any MRIs using the port too which will simplify that for me. In the past 3 weeks, I have had 7 MRIs so this should simplify things a bit.

3) I can put lidocaine on the skin before infusions

I don’t know that I’ll necessarily need to do this but if I really just don’t want to feel a poke then I can rub lidocaine on the port site before my infusions. 

4) It took longer than they planed

Updated day of surgery to add:

They said the procedure would take 3-4 hours max from the time I walked in the door to the time I left. Everything went smoothly and there were no medical complications: 

Arrival 6:15 am

Departure 11:35 am

5) Port placement was based on my dominant hand

Since I’m left handed I had my port on the right side. I actually didn’t care or think it would matter but the doctor said that just like an IV, ports can by finicky. It’s possible I’ll need to keep my port-side arm stationary during the IV or hold it in a specific way. By placing it on the opposite side of my dominant hand, it means I’ll be able to use my dominant hand no matter how finicky my port is that day.

6) They used glue to seal the incisions

I expected stitches and a bandage but they actually used a thick glue instead. I liked that much, much better. It acted as a barrier and I was able to wear normal clothing over the incisions without irritation.

7) There are two incisions

The doctor recommended that we put the port on the right side because I’m left handed but also communicated that if you place it on the left that it’s sometimes a more simple procedure. During the surgery they tried to thread the port just like you would on the left side but it just wasn’t working so they ended up threading the port into my jugular which required an additional incision at the neck.

That incision actually ended up being more sore but maybe it’s because I woke up during surgery. I actually woke up 3 different times and I believe the procedure only lasts 20-30 minutes. During one of the times I woke up, there was discomfort at my neck and I could feel them pulling. I thought they were just putting a bandage on and I turned my head to the right which was toward the procedure. I heard the doctor and nurses panic just a little and insist that I turn my head back to the left. That’s the last thing I remember.

I woke up with my hair covered in blood so I wonder if that caused a little bit of a problem. Glad I was asleep for the end of it and next time hopefully I’ll be more sedated. Ha!

Very much looking forward to less pokes.

This photo of me and Isaac brought to you by a few hospital stays, his day off work and the waiting room for the port consultation.