When Is the Right Time to Remove My Port?

There’s been so many profound changes for individuals with cystic fibrosis (CF) over the past few years. Many of these changes are a direct result of the release of Trikafta and the improvements in people’s health and quality of life that followed. Even some time later, we are still seeing the effects of Trikafta like sweet announcements coming from CF friends deciding to get their ports removed.

With better health and more stability, they are finding they aren’t using their port enough to warrant keeping it. It’s a big step! One that deserves careful consideration and realistic thinking.

What is a portacath?

According to the Cystic Fibrosis Foundation, a port or portacath is an implanted device that provides permanent and long term venous access for IV antibiotics, nutrition, fluids, and lab work.¹ In CF specifically, ports are used for long term IV antibiotics during a CF exacerbation whether in the hospital or at home.

A port insertion is an outpatient surgical procedure where a rubber catheter is threaded into a larger vein leading to the heart and the port is inserted into a “pocket” under the skin. The port septum is where a special needle called a Huber needle is inserted to gain access to the port.¹

When the port is not in use, it has to be accessed with the Huber needle and flushed with saline once a month. Many individuals with CF or a family member learn to access their own port, or they have a home care nurse or infusion center do the monthly flush.

How do I know when is the right time?

As mentioned above, deciding to remove your port is a very personal decision to be made with the guidance of your CF care team. However if you’re itching to get rid of your port, it might be helpful to start thinking through some of these questions to determine if it’s the right step for you:

• How long has it been since you needed to use your port?

Has it been over 2 years since you have needed your port for IV antibiotics? Maybe a year or more? Or maybe you have used it a few times in the last year and feel it’s still a necessary tool?

• Is the monthly maintenance of my port inconvenient?

How do you keep up with the monthly flushing of your port? Is it something you can do yourself with little inconvenience or a hassle each month to make an appointment? Have you been late or missed a monthly port flush entirely?

• How would you get blood work and infusions otherwise?

In the past, has getting blood work, a peripheral IV, or PICC line inserted been an issue? Does it take multiple attempts to get venous access? Do you experience a lot of anxiety surrounding needles?

• How do you feel about your port and body image?

Does your port make you feel less attractive? Do you feel your port makes you think negatively, positively or neutral about your body?

Not so soon

Although I love seeing my friends take this step towards celebrating health stability and greater independence from CF, I know that their decision to get their port removed is their own. At this time, it’s not the right decision for myself (even though I would like it to be). I still use my port quite frequently, i.e. four rounds of IV antibiotics in the last year. I do not want to go back to getting traumatic PICC lines that my scarred up arms can’t handle. In terms of maintenance, taking care of my port is pretty simple since I know how to access and flush it myself.

If I talked through the questions above, it’s pretty clear that, for the time being, my port is staying. Maybe in the future, I'll get to make this wonderful announcement as well, but for now I'll keep this tool in my CF tool box.

Have you made the decision to get your port removed post-Trikafta? What kind of decision making process did you use? Share with us below!