Hey, there! My name is Aubrey Winkle and I am a senior at UT in Austin. 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 part of my life 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 living with a Port 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 BACKBACK AND INFUSION PUMP
This probably has 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 asked my infusion company if I could get one and they sent me one! 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 pricey, but it has the perfect size, really high quality and waterproof so I don’t have to worry about rain damaging my pump)
3) SHOWER SHIELDS
These make showering so much easier. Granted they don’t work perfectly but I usually put two on and shower carefully and they keep my port dry.
4) SEATBELT COVER
The only time I really have discomfort from my port is when I am riding in the car and the seat belt rubs on it. You can buy or make covers that strap onto your seat belt and provide extra padding. Here is a place you can buy one and here is a DIY tutorial for making 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.
You can tell your infusion company (or whoever you get your supplies through) that the dressing is giving you an allergic reaction and they have to give you a different kind.
6) Learning how to access my own port
This 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 go swimming or the bandage starts to really irritate my skin.
Learning how to access and de-access my own 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.
I created a Youtube video showing how I change my port, but make sure you are properly trained by a nurse on how to do this and know the risks associated with it before doing so!
LET US KNOW IF THESE PORT TIPS WERE HELPFUL IN THE COMMENTS SECTION BELOW!