Hey, there! I have Lyme Disease and postural orthostatic tachycardia syndrome (POTS) and as a result, have a port for my treatments. I do 4 hours of IV infusions every day through my port. I have had my port for about 8 months now and it has become such a big part of my life that I barely even notice it anymore. I know it may seem like a big adjustment to have to start living with a port, but here are some tips that will make the port life much easier!
1. V-neck shirts
I love wearing v-neck shirts because they make accessing my port so much easier! I have to do 4 hours of IVs every day so it’s a huge help to have easy access to my port. H&M and Target have them for around $5.
2. Mini backpack and infusion pump
This has probably been the biggest game-changer in my life. I do infusions for 4 hours each day. When I saw someone else with an infusion pump I reached out to my infusion company to get my own! You might have to fight for it a bit (and it depends on if your insurance will cover it) but it is so worth it.
I barely notice my infusions now that I can take them anywhere. This is the backpack I use (it’s a perfect size, high quality, and water repellent, so I don’t have to worry about rain damaging my pump)
3. Shower shields
These make showering so easy! However, they don’t always work perfectly, so I usually put two on and shower carefully to make sure to keep my port dry.
4. Seatbelt cover
The only time I have discomfort from my port is when I am riding in the car and the seat belt rubs on it. There are several different designs and styles of seatbelt covers for sale on Etsy. Or, you can make one yourself using a tutorial like this one!
5. Find a dressing that works for you!
Don’t settle for a dressing that makes your skin itchy. There are so many different types of dressings. I had to try about 4 before I found one that didn’t bother my skin.
If you are experiencing any kind of allergic reaction to your dressing, tell your infusion company (or whoever you get your supplies through) so that you can get a different kind.
6. Learning how to access my port on my own
Accessing my port on my own has made my life so much easier. I have a home health nurse come out to my house once a week to take labs and change my port dressing. However, it’s summertime in Texas and sometimes I want to be able to access my port on my own if it starts to get irritated or if I want to go swimming.
Learning how to access and de-access my port meant that I didn’t have to suffer through an itchy dressing and wait for the nurse to come out. It gave me more independence and control over my summer activities.
Got more questions about life with a port? Join us in our Friends in the Fight Facebook group to connect with our community.