Decision To Port
For me, hospital stays usually last a week or more. During admissions, there’s a constant need for blood draws and labs and it’s painful and uncomfortable. I’m not sure about anyone else, but I know that conventional IVs usually pop a vein or bleed out, and then I have to have it replaced. I’ve had regular IVs in my arms, hands, wrist, and, once, right on my thumb (very painful).
Enduring a PICC
Having CF means that we have to endure a lot of pain and discomfort. I usually jump on anything that can help alleviate that. I am used to being poked by needles, so they don’t hurt me anymore. I’ve been getting poked by needles as long as I can remember, and having gone through a lot in my life, I am used to these things.
PICCs were the next phase of treatment, as regular IVs can’t function to the capacity that I needed and they usually just fall off. I started with midlines, which is a shorter PICC. It usually goes in the upper arm and it goes in the large vein. An ultrasound is used to guide it in place. This too became bothersome after a while because my veins become uncooperative.
I remember during a procedure to have a PICC put in, my large vein shifted and she hit a nerve. In that same procedure, she tried on my other arm and that also proved difficult. PICCs are great, but it’s also not really for long term usage because it’s good for people who have IVs once or twice a year. PICCs gradually became painful and just didn’t work for me anymore.
Getting a port put in
I researched and talked to other CFers about the process of getting a port and it was relatively positive. Ports come with their own maintenance, but I felt that it was the right thing for me because I get IVs done at home every 4 months or so. I talked to my CF doctor and he agreed that it was a great idea and next step.
Surgery to get my port put in--which was implanted in my chest--was pretty good. I have no negative things to say. I love my port! Everything is done through there: blood draws, IVs, etc, everything--and it’s not painful. I learned how to access it myself so I can flush it once a month, which makes me feel good because I love learning how to care for myself. I feel blessed to have a team that promotes so much independence in their CFers.
I appreciate my port
I am glad that I have my port. While it’s not for everyone, it definitely works for a lot us that require frequent IVs and labs.
I know a lot of concern is how much it sticks out from the skin and how many can feel self-conscious about that, but I have a lot of scars due to CF. I wear this badge proudly because it represents how far I’ve come with this disease. If anyone asks about it when it’s accessed or de-accessed, I talk about CF and use the chance to raise awareness about this invisible disease. We may look okay on the outside but inside we’re sick.
My port is a part of me now and it makes me, me. I’ve come a long way with many surgeries and procedures, and my port is one of those procedures that I look at with a smile. It really has made a part of CF that use to be painful into something much more bearable.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?