My new attachment: update!

 After seven years of having my port, I finally got it removed in April. My port was used mostly for IV antibiotics (or the odd miscellaneous infusions), but having not used it for 3+ years, my doctor determined that it had finally become obsolete. 

In fact, the last time I needed any antibiotics was in 2019. That was also the last year I went into the hospital, and in November of 2019, I started Trikafta, which has drastically changed my life. 

The day I got my port, August 2014

I don't think Trikafta is the only factor behind getting my port out, though. One major benefit, ironically, has been COVID. Masking and social distancing - surprise, surprise - has greatly helped keep me safe and healthy, not only from COVID but from all sorts of other infections. I've barely had colds in the last few years, let alone major illnesses. But I've also been more diligent and proactive in my health by myself. I've taken on the responsibilities of CF with everything I've got. I remember in 2019 I made it a personal goal to only go in the hospital once that year. Little did I know that'd be the last time I'd go in indefinitely. It hasn't been Trikafta doing all the work (though I admit it has done a lot of the heavy lifting). I've stepped up hard to make it happen. And I'm proud of the progress I've made.

It is a weird feeling having my port out. It was overwhelming getting it out. When I got it placed, it was just a few short months after Anna had died. I had told her about needing to get one. My port has gone through its entire lifespan since she died. 

Post-portum 

Before. Look how fat I am compared to 2014!

But it's also an amazing feeling to have it out. Sure, it doesn't necessarily feel much different, but the implications and general sense of having it out is incredible. My doctor and I have begun discussions to remove my feeding tube. I haven't used that in more than a year now, and I've gained between 6 - 10 pounds on my own in that time (in fact, my doctor used the word "moderation" with me for the first time ever!). While this step will take a bit more discussion and planning, it is amazing to be having the discussion in the first place. 

My port coming out isn't without its challenges, either. Of course, we don't know what Trikafta has in store for CF patients long-term. Theoretically, it should work forever and then some. But it doesn't mean I don't have CF. Needing antibiotics is still a very real possibility, and now that I don't have a port, my options are oral antibiotics or getting an IV or PICC. Hopefully oral antibiotics would do the trick, because my body was beginning to get used up in terms of getting PICC lines placed. It isn't impossible, and I can still technically get another port placed in the absolute worst-case scenario. But hopefully we don't even have to cross that bridge because we won't come to it. 

My CF updates seem to be happier and more hopeful every time, but with them I always need to remind myself that cystic fibrosis is a progressive disease and we simply don't have the data for how Trikafta affects patients long-term, or what "long-term" even means. I still have CF, and many patients around the world do and they don't necessarily have the ability to take Trikafta. With every celebration comes an important reminder and consideration that while it is good and important to hope and plan and look forward, it is even more important to stay present and know what is here for us today. For me today, that means enjoying not having a port anymore!