My Port Gives Me a Piece of Freedom
There are moments throughout my day living with cystic fibrosis that I sit back and watch my freedom slip away. Like water running through my fingers, there’s no stopping the exchange of motion. Sometimes it’s a continuous flow, and other times, it’s in a more periodic fashion.
Either way, it’s never easy to watch your freedom deprived from you. It hurts and stings, even if I know the deprivation in various ways very well keeps me alive. It hurts most knowing in a healthy body you’re awarded more freedom with your time, energy, and hopes and dreams and often it is taken for granted.
Getting a port for my cystic fibrosis
When I knew it was time to get a portacath for IV antibiotics, I was disappointedly reluctant. To me, a port meant I was getting sicker. Another part of my body would be altered to fit the demands of my disease. Possessing scars and unusual bumps, I would look different than the other twenty-something-year-old women like me. Once again, an exchange of my freedom was being made.
Finally, I agreed on two conditions:
- I wanted the port to be implanted in a unique location on the side of my ribcage
- I wanted to learn to access and de-access it myself
It turns out under these conditions, getting a port was a redeeming decision in my cystic fibrosis care because it unexpectedly gave me a piece of freedom.
Freedom from PICC line trauma
For many years, I saw the inside of my upper arms speckled with white scars from difficult PICC line insertions. PICC insertions are genuinely minimally invasive procedures until you start developing scar tissue. Then they can become hour-long episodes of anxiety-ridden sterile drapes, ultrasound machines, long wires, and intimidating needles. The procedure never felt worth the anxiety it caused me, but it was there. Always there.
The fear of gaining venous access for IVs has virtually disappeared having a port. Undoubtedly, I know each time I go to access my port with my Huber needle, sterile supplies, and mirror, I gain the control back. I gain freedom from the worries and anxieties that used to swirl in my mind when it was time for IVs. Replacing those anxieties, my port represents a secret weapon against my disease that is dependable, dutiful, and waiting for me when I need it.
Freedom to continue my responsibilities
My life in many ways was put on hold once starting IV antibiotics. That’s something you learn very quickly upon your first “tune-up”. In the past, being admitted to the hospital to get a PICC line caused me to miss out on school days, work days, birthday parties, trips, or inside jokes that would be repeated for years to come. Transitioning back to Home IVs took time and babying an arm with a PICC line always felt like a nuisance. That all changed when I got my port - a lot changed, thankfully.
Just as easy as the Eclipse Balls showed up at my doorstep, I accessed my port and began antibiotics. It simplified the process for me. It allowed me to continue on with my own responsibilities without significant interruption. I could continue working. I could continue being a mother. I could continue being a wife. I didn’t have to let the disease drown out my other roles I worked so hard to fill. (Of course, this often gets me into trouble because it’s a lot to handle). My port opened up the freedom to continue living my life as I treated my cystic fibrosis. And as an adult with CF, isn’t that always the end goal?
Freedom to enjoy the little things
Something I hold onto when I’m in the thick of IVs - when I feel poisoned and sleep-deprived - are the simple joys my port allows me to experience. Having the control to de-access for a relaxing bath or shower can feel renewing like a spa day. Lifting my son up without the worry of blowing a PICC line is a mother’s right. A summer swim with my family, the people who love and support me through my disease, makes me feel included and less isolated. The little freedoms my port rewards me add up and restore me in a time where I often feel drained and weak. It makes a difference on my mental health, knowing if and when I need a break to enjoy the little things in life, I have the freedom to do so.
The decision to get a port felt like another step towards cystic fibrosis taking over my life and body, but in reality, it gave me the freedom to live with my disease in harmony.
Do you or a loved one have a port due to cystic fibrosis? What decisions in your medical care have given you more freedom with CF? I'd love to hear about your experiences in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?