Thursday, August 11, 2016

Port Update: The Good and the Bad

Last December I wrote a blog about my decision to get a port and the reasons that I never wanted a port before last year. You can find that blog here. Well, it's been nearly a year, two hospital stays, a lot of daily living and exercise, plus monthly (or so) flushes, so I have a pretty good idea of my feelings towards said port. I figure it would be best to highlight my reasons for not wanting a port in the past and whether or not those reasons were worth the concern or not. Here it goes.

1. I never liked the idea of leaving the hospital with a medical object in my body. 

Nothing like a port flash in Starbucks.
This still holds true. I'm still not wild about the idea of "taking a part of the hospital" home with me but I actually think the medical object inserted under my skin on top of my pectoral muscle actually looks kind of rad. It's provided some great opportunities to talk about CF with folks who never knew what CF was (the oxygen in the gym does that too), and in a weird way, it gives me a good indication on how I'm doing with my weight. I'm constantly changing up my nutrition plan to either increase muscle or cut fat, and when my port looks like it's sticking out a bit more, I know that I've leaned out a bit. Bennett also loves to poke at it and it seems to distract him or keep him entertained when needed. I think the only real negative that stands out is the monthly maintenance required for the port and the feeling I get every time it's accessed. I still feel like throwing up every time they access it correctly. When they don't access properly (happened once), I didn't have that feeling. Weird. It's not the pain that makes me feel like that as it doesn't really hurt, but it's definitely the same sensation that happens every time and I certainly wouldn't call it pleasant. 

Verdict: This really isn't a big deal and there might actually be more pros than cons to having a medical object in my body...not to mention not having to wait for a PICC line or get peripheral IV's which has been awesome...and my wife thinks it sexy. Case closed.

2. A port always seemed to be the "next (unwanted) step" in the CF life. 

This one didn't take long to get over. When I framed it as simply a better treatment option for me at the time, it was easy to accept the port. I'm actually overall healthier now than I was say 10 years ago, so I can't say that my disease progression was the reason I had to get a port. The big reason was because I could not get PICC lines anymore after my veins said "no thank you". So although it wasn't a complete "choice" on my part, it ultimately hasn't felt like it was just the next step in the CF life. It's made parts of my CF life easier and so far, has had very little impact in my day-to-day life. Just like feeding tubes, new antibiotics, hospital stays, etc., it's generally prudent to do whatever it takes to be the best version of yourself. It's not so much a step towards "more CF", but in many cases, a step towards a better life. Once I fully put in place the mindset that I "preach", it was easy to agree to a port.

Verdict: Not a big deal at all. When I look in the mirror, I don't think about CF anymore than I did before. I "play" with it quite a bit by moving it side-to-side and never once have I thought about CF while doing that. It's a port. A port that's in me. But in no way has it changed who I am, what I think about or the status of my health.

3. I've always been worried about any limitations, real or perceived, with a port.

My biggest concern with getting a port was my fear that it would limit or inhibit my exercise routines or time at the gym. So far, the port has not held me back in any way at the gym. Certainly not as much as my hemoptysis does (more on that in a later blog). I have not felt any weird sensations when lifting and about the only thing I feel in some exercises is the little tube that lays on my collar bone moving. There are very few exercises I've had to modify with upright rows being the only one that presently comes to mind (just need to have the bar a little further from my body). I do shoulder presses, chest presses and anything else so far that seems to move the port a bit when I lift. The only "limitation" that I've had is when rough housing with Mckenna or Bennett (which we like to do). I have to be cognizant of where their little hands are and make sure they don't tug at the port as it can still hurt a bit when moved around or pressed in too hard. Other than that, I can't think of any other way that my day-to-day life has been impacted negatively or limited in any way.

Verdict: My biggest concern was quickly alleviated right when I got back to the gym and definitely made me more accepting of the port. I rarely notice that its there, and when I do, I quickly move on. This was probably my biggest hinderance (besides simple stubbornness because I didn't really need a port) and the only way I was going to know is taking the port for a test drive. Well, its been driven, and it's still a car I would choose to get into.

So, what does all of this mean? Would a recommend a port? That's a tough one. I was in the no port mentality for so long, 35 years, that I still completely understand and accept other's reasons for not wanting a port. Would I have gotten a port if I wasn't forced to based on the condition of my veins? Probably not. A PICC worked just fine for 20 years and I was in the "if it ain't broke, don't fix it camp". Will the decision to stick with PICC lines that possibly did tissue/vein damage come to bit me in the rear at some point? Maybe, but I'll cross that bridge when and if I come to it. All I can do is share my fears, expectations, realities and outcomes with regards to a port and leave it up to each individual in their own unique situation. 

Ultimate Verdict: I don't think choosing to get a port or not is a clear cut decision. For me, it was the only choice at the time and one that I have not regretted being forced into.