Journey to the Port

A month ago I made the decision to get a port. It was a long and difficult decision for myself to make for several reasons. There were so many pros and cons in my head, but mostly it had to do with being stubborn. If you know me personally, that is not a surprise..

The Basics

For those of you who don’t know what a port is, it is basically a permanent access place for IVs and such. It is typically implanted into the chest and can stay there for years and years. This is instead of IVs, which have to be changed every other day; or PICC lines, which can stay in for a couple of months. Typically when a CF patient gets admitted to the hospital for antibiotics, they get a PICC line placed to receive IV antibiotics. However, over time scar tissue builds up in the veins making it hard to place the PICC lines, which is the time that a port is placed.

I have included a picture to show pretty much what a port looks like. I know I was pretty confused the first time I learned about them!

My Dilemma

Back in January I had a blood clot in my left subclavian (which is basically your shoulder). This was caused by my vein being irritated by the PICC lines “attacking” it. Luckily we caught it early and nothing happened besides a sore arm, which is how we found the clot in the first place. I was told that a clot like that can cause a Pulmonary Embolism, which can be very life threatening. So that’s when I was told to start thinking about getting a port because my veins were obviously not liking the PICC lines anymore. They had just had enough I guess, which I guess I don’t blame them. It’s gotta be pretty annoying to have this tube come and “attack” you a couple times a year! So I started to think about, but thought I had a decent amount of time and was preoccupied by school.

Well I got sick the day after school got out and wound up in the hospital before I made a decision about the port. So they put the PICC line in my right arm, which hadn’t been used in a while because it had too much scar tissue for the team that comes and inserts the PICCs at the bedside. I had to be carted down to Interventional Radiology (IR) because it would be too difficult of a task for the bedside crew to do it. After that hospital visit, I decided it was really time to buckle down and really make a decision. I didn’t want them to have to use my left arm for a PICC the next time and risk getting another blood clot.

Then began my serious decision making process. I started talking to people who knew about ports, people who had them, and my friends and family to have them all weigh in their opinions. I also started researching information on the internet, since I really didn’t even know that much about them in the first place. All the information and opinions that I gathered led me to feel better about getting one. The only reason I didn’t jump on getting one right away because I was in denial. I didn’t want to be one of those “sick kids”. I have considered myself fairly healthy as far as CFers go. I know that my health has been declining in the last few years, but in my head only really sick people got ports. It also made me kind of mad because I have been taking really good care of myself. So having to take that step was almost like the universe slapping me in the face or something. I always knew that a port would be some time a part of my future, the future just came a little quicker than I expected. Then in August I started feeling sick, which I guess just kind of finally made me make the decision to get the port. The last thing that I did before making the final decision was talking to a nurse in IR. She was so amazing. I just went down to get a pamphlet. Instead, she took the time to sit down with me, talk me through the whole procedure, show me an example port, what it would look and feel like underneath my skin, and answer all of the questions I had.  I think I knew that was always going to be my decision in the end, since it was the rational decision and I am a very rational person. It was just really good and mind-easing to talk through the whole thing with the nurse.

Post Port Placement

So now I have had my port for a month and am really happy with it. I am using it for the first time during this admit. It is making life so much easier! The healing process was really quick too. I couldn’t believe it. I only had restrictions for a week, and it didn’t even hurt after that week. It was kind of crazy how fast it healed. So, 9 months later here I am.. good decision!

So if you have any questions or want a more detailed description of my experience please contact me. I would be happy to chat!