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.

To port or not to port?

That was really never a question for me.

I've been getting PICC lines for the last 20 years or so and with nearly (over?) 50 under my belt, the answer to getting a port or not was an easy one - If it ain't broke, don't fix it. Well, that was the easy answer.

Recently, I've had issues with my PICC lines that started making me open to the idea of actually entertaining a port. It started with PICC line placements taking longer and longer because of so much scar tissue and switching to the other arm when the first one was "shut off". Then there was the time (last year on Thanksgiving) that the PICC line got stuck in my arm the day of discharge and the worry that came along with thinking it may have snapped and was now making it's may through my body. The straw that broke the camel's back, and my tag line, was this last hospital stay in April when they had to leave the line short and weren't able to do any blood draws from it. That became particularly sucky when I had to spend two weeks in the ICU and 35 days total in the Hole with multiple stabs and blood draws.

In short, it's broken.

After I was released, the decision was made - next time I get a tune-up, I'm going with a port.

Well, that time is now.

A port was placed last week and the procedure was actually faster and less painful than getting a PICC placed. There was (and still is) a recovery period with some pain, but it was the same, albeit a longer period with a port, with the PICC.

I was always asked why I didn't get a port (see my answer above), but I thought it would be fair to all of you guys to really think about the answer and try to articulate it in a blog. Here is my attempt.

1. I never liked the idea of leaving the hospital with a medical object in my body. In fact, I'm still not wild about that idea, but it is what it is. What I loved about the PICC line was the fact that when I went home after a hospital stay, I felt like I left the hospital at the hospital. Let me remind you (maybe contrary to what you might think), I don't think about my cystic fibrosis that often. I'm too busy with life. I'm too busy thinking about others' cystic fibrosis. Frankly, I don't see a reason to think about my disease. Doesn't move the ball forward. By leaving with a port in my chest, I'm afraid that I may think about CF more than I want to when I look into the mirror...although I guess you could
argue that the 6 inch scar on my belly would do that.

2. A port always seemed to be the "next (unwanted) step" in the CF life. If you haven't noticed, I like to be different. I don't find my identity in having a disease and therefore try to avoid doing "disease things". I don't know how to put that more eloquently. If I was supposed to live a certain way, feel a certain way or die a certain way because of cystic fibrosis, I would fight like hell not to. I've always been good at compartimentalizing my CF and separating myself from all of the sickness and dying around me, while still being fully immersed in the community. Getting a port just felt like I was taking a step towards being more disease and less Ronnie.

3. I've always been worried about any limitations, real or perceived, with a port. The first two objections I had can be easily overcome as they are mostly mental. I've always prided myself on my mental approach to (CF) life (thanks Mom!!) and there is no doubt that I'll be able to look past (or justify) the medical object in my body and the next step in the CF life, but it's hard to look past limitations that could be physical ones. I've heard the stories. Friends of mine who had to stop certain workouts because of the port. A gentleman in the community who had to change careers due to a port. I don't like being limited. Part of my comeback story has been the ability to push myself in the gym and live life like a nut. If I feel at all inhibited in doing so, I'm afraid of the mental impact caused by the physical limitation. With that said, we've all seen some amazing athletes with CF and a port.

So there you have it. I tried to be as honest and thoughtful with this post in identifying the road mental block to getting a port. Now that the port is in my chest, there is no turning back. I'm all in. I will own this silly little button in my chest and use it as a reminder to push myself even harder to avoid taking the "next step" in this CF life.

Plus, my wife thinks it's sexy. And that my friends, doesn't suck :)

PICC vs. Port