The Misadventures of My Tubing

A lot of people are curious about life with meds being infused intravenously 24/7. Some want to know if I can feel the liquid periodically squirting into my veins (not unless it’s very cold). Many wonder what kind of maintenance is required (I flush the lines, put in a new battery and change the bag attached to my pump every morning). People often ask where the medicine goes since the tubing runs out the bottom of my shirt (my upper right arm). Others wonder how I shower (I don’t).

Just kidding – I unscrew myself from the pump and wear a waterproof sleeve that pulls onto my arm and covers the site.

But when people ask questions about the IV, they often overlook the line of questioning that holds the most interest for me – the adventures of the tubing. The tubing that goes from the pump to my arm is approximately three miles long and has been known to get into what I’ll call misadventures from time to time. Beyond the occasional joys of clothes-lining myself when getting dressed and nearly strangling myself while sleeping, my tubing has been cause for both great amusement and sheer dismay…for it has gone where no tubing should go.

The first of these adventures was a special day spent outside – unfortunately for the tubing, I was not outside. It was dangling out my car door for well over half an hour while I drove to retrieve something from my office. Fortunately, the pump was able to continue functioning throughout the wild ride, which bodes well for me, should I ever slam a [very slim] finger in my car door.

Another favorite place for my tubing to explore is the toilet. You may be wondering whether its little swims have taken place before or after I’ve actually used the throne. Fortunately, I’ve only experienced the former thus far. However, I fully expect Mr. Tubing to take the dirty dive at some point during our relationship. Don't worry - the tubing also gets changed as a part of the daily routine!

Finally, the most shameful experience for my poor tubing to date was the birth of the term “twedgie”. My shower routine involves me undressing and starting the water before unhooking from my pump to minimize my time without the meds, which inherently requires me to spend a short time naked with my pump hanging around my neck in its special pouch. Sadly for Mr. Tubing, that leaves it dangling in perilous proximity to my posterior. One day, I leaned over to adjust the water temperature and stood back up to discover my first “twedgie” – a tubing wedgie!

Too much information? Perhaps. Particularly because I know you all now have a lovely mental picture invading your thoughts! Enjoy~

Why, Why, Why, Why, Why?

In business, we’re taught to use the “5 Whys” to get to the bottom of just about anything. It’s very simple – ask why five times and you will often reveal the root cause or reason for something. In my line of work, the whys are particularly important to success because marketing is all about pulling levers and measuring impact – knowing why certain levers work better than others is the name of the game. We drive the business forward by knowing why things happened in the past.

So my analytical mind continually returns to this simple question: why me? And not in a “life’s not fair” kind of way (though I do occasionally allow such self-indulgent thoughts), but in a “why did I survive” sort of way. There have been many tall hurdles to my survival, ample opportunity for death to win, and yet here I am, once again a productive (if to a diminished capacity) member of society.

My mom carried me over that first tall hurdle – she (and whoever encouraged her to come see me) saved my life. She flew up to visit me when I was first feeling very sick but before we knew there was a serious problem. I told her not to come, but she came anyway (incidentally, not the first time she did something I asked her not to do). She arrived by cab late one night and took me to the ER (well, technically I took her to the ER since I very rarely allow myself to be a passenger instead of a driver) the next day. The doctor we saw ran some tests and sent me away with a diagnosis of indigestion and a prescription for Prilosec. Great.

If it weren’t for my mom, I MIGHT have gone to the ER that first time. However, I most definitely would not have returned the next day for a second look. She was supposed to get on a plane that day but decided to stay after I’d been reduced to tears by the sickness and exhaustion. That stubborn woman made me go back to the ER and fortunately we saw a different doctor. To make a long story much shorter, I was admitted for overnight observation and went into cardiogenic shock late that night. Unfortunately for the grim reaper, I was in the hospital when this transpired, making the score: Andrea – 1, Death – 0.

I met other hurdles and expect to encounter more, but this post is about survival – more specifically about why I have survived. I keep waiting for a “calling” to hit me over the head or a special opportunity to present itself to me. There must be a reason for someone to defy the odds and walk away relatively unscathed (except of course for a weak heart, an IV, lots of skin puncture scars on my neck and arms and a device implanted above my left breast). Should I start a charity or switch careers to work with children in need? Am I meant to somehow help others going through a rough time? If you figure it out, please do fill me in. Until then, I’ll just keep asking myself why. And I'll keep thanking my mom for giving me the privilege to do so.

Funny Glasses, Funny Things

If you squint your eyes just right and maybe don someone else’s prescription glasses, you can sometimes see humor in heart failure. People might think you’re crazy at first, but if you take yourself too seriously you might just end up in the loony bin anyway, so I say try to laugh instead of crying whenever possible. Sometimes you just need the right single-minded nugget to find amusement in spite of the not-so-funny stuff taking place around and within you.

One such nugget is my pump that delivers 24-hour meds through a PICC line in my arm. When I’m not cursing its existence or worrying about possible infection, I sometimes derive great amusement from it. It offers a wealth of material suitable for a variety humorous situations. For example, when I returned to work recently, I was offered some brilliant advice. I told my friend M that everyone was asking questions about my newest accessory, and she suggested I tell people it’s my pee pee catheter. A hypothetical conversation might go like this: Person X would say, “say, what’s that bag hanging around your neck” and I would respond with, “it’s my…[insert increasingly relieved pee face here]…whew I feel better now, it’s my catheter.” Now that could provide entertainment on the spot, plus amusement during the retelling of the story including a reenactment of the other person’s reaction, as well as a possible bonus of rumors subsequently floating around the building and back to M.

Also amusing is considering whose heart I might land if I end up requiring a transplant. This game is neither based in reality nor appropriate for sharing, given it is based completely on stereotypes, but that’s what makes it fun. One scenario I like to consider is getting the heart of a young black woman. Might I suddenly possess incredible rhythm and dance moves? Likewise, if my donor were a middle-aged gay man, would I suddenly wear really cute belts and walk with a swagger? Or maybe if I got the heart of a young woman that actually possessed some tendencies toward style and/or femininity, I might be better able to fulfill my mom’s fantasies of long days of shopping with her only daughter – and possibly stop wearing my fully functional but embarrassingly dorky opaque knee socks to work. Then again, if I got the heart of an accomplished country club member, I might be able to occasionally establish contact between my driver and a teed-up golf ball to fulfill my dad’s latent dreams…

I could go on and on but I think that’s enough fun for one day. The point is this – if we can find humor in heart failure, you can be damn sure there’s something funny about your life. Just borrow someone else’s glasses, pour yourself a cold beer and try not to take things too seriously.

Introduction

Once upon a time I was falling in love
But now I'm only falling apart
Nothing I can say
A total eclipse of the heart

Remember that classic song by Bonnie Tyler? That's the inspiration for the name of my new blog: Total Eclipse of the Heart. The inspiration for the blog itself is a little heavier. But where are my manners? Allow me to first introduce myself.

My name is Andrea, I'm 28 years old (for another few months), and I was born and raised in Atlanta, GA. I spent almost ten years in different parts of Virginia during undergrad, a few working years and then business school, and then I moved up to New Jersey in pursuit of the career I'd worked very hard to land. I've been working in marketing for a global healthcare products company for about a year and a half, and I've loved (almost) every minute. It is the fast-paced, inspired professional environment I dreamed of during my three years working in the non-profit sector. Until five months ago, my biggest concerns were getting promoted as soon as possible and squeezing a modest amount of personal time into my long work weeks. Until five months ago, I was a healthy twenty-something that worked hard and played harder.

In the last five months, my life has changed drastically. I experienced acute heart failure on October 18, 2009, spent the subsequent month in the hospital and finally returned to work part-time March 1, 2010. Needless to say, my career has taken a backseat to my survival. I'll probably share more details at some point, but for now, I just want to introduce my story and greet any early readers. I've been reading some other great heart failure/transplant blogs and felt inspired to start one of my own.

Some that I like, by the way, are:

The Heartbeat Diaries - http://heartbeatdiaries.wordpress.com/
Helen. With the Heart. - http://helenwiththeheart.blogspot.com/
My 2nd HeartBeat - http://my2ndheartbeat.wordpress.com/

If I've managed to keep your attention thus far, congratulations to me. And to you, I will strive to deliver more interesting content in future posts. I am a witty cynic at my best and a reflective sap at my worst, and this blog promises to illustrate both ends of my personality spectrum. So thanks for reading. And I hope to see you again soon.

Cheers~