This is time. This is the delicate piece that cystic fibrosis has aggressively sculpted in its 26 years. This is a body working against itself and for itself, all within the same breath. This is a God given body, altered by medical professionals with one mission in mind; to keep it alive. This is me.
Needles, syringes, and IV's are limbs. Nurses and doctors are family. Hospitals are home.
In February of 2013 I made an on-the-spot decision to have a portacath inserted into my chest. At the time, I had just been admitted into the hospital for a lung infection, or what us CFers call, a "tune up." Usually, within the first day of being admitted, a team of specialized nurses would visit me in my hospital room, dope me up with Versed, and insert a PICC (Peripherally Inserted Central Catheter - a small, flexible tube used to intravenously deliver antibiotics, chemotherapy medications, nutrition, and/or draw blood from) just above my elbow on my inner arm, threading it through my vein until it reached the outside of my heart.
If you have ever had a PICC inserted without mild sedatives, I commend you.
Once the PICC was in place, doctors would start me on heavy duty antibiotics. A PICC is helpful because the antibiotics are able to be administered quickly through the bloodstream. After about a week in the hospital I would be sent home to continue two to three more weeks on home IV's. Once I felt better and my lung function had improved, the PICC would be removed from my arm, and may I add, much more easily than the process of insertion.
However, during this particular visit in the hospital, nurses could not find a proper vein to insert the PICC. Even after ultrasounds were performed on both arms, my veins were deemed either almost invisible or too scarred from previous PICCs. Upon hearing this, I immediately became panic stricken. What did this mean? My nurses left my room to discuss other options with my doctors.
The next thing I knew, one of my nurses came back into my room with news that my doctors had ordered a port* insertion scheduled for the following morning. Then, without hesitation, asked if I'd prefer it to be inserted into my armpit or chest. I quickly shouted, "chest!" The thought of a needle in my armpit freaked me out. My nurse explained more about the type of port I was going to receive and then left my room. I was in tears. My stepdad had been in my room the entire time and witnessed it all. He was excited for me and immediately tried to lift my spirits by listing all the reasons why this port insertion would be so great for me. It went in one ear and out the other.
I had seen ports before and I had seen the eyesore of scars that ports have left. I wanted no part of that, ever. Plus, until this time, I had never looked "sick." If I had a port, I wouldn't be able to hide my disease. I'd have to start answering questions. I'd look less attractive. My femininity would be stripped from me. All of these thoughts devastated me.
That night, alone in my room, I wheeled my IV pole over to the mirror above the bathroom sink and undressed. I stared at myself and touched my chest as tears rolled down my cheeks. This was the last time I'd see such a feminine part of me untouched by cystic fibrosis. I took a mental picture, redressed, and went to sleep.
It's been three years since my port was inserted. The first year with it was quite troublesome. More so because of the emotional pain it brought. And yes, even though it is quite a small change on my body, it has taken a large toll on my ego and pride. I've been shocked at some of the comments, remarks, and questions that I have received about my port. It goes to show that when people see something out of the ordinary, they assume. No, it doesn't hurt. No, it isn't a cyst. No, it isn't a third nipple. Yes, I've been asked all of these questions a handful amount of times and it is disappointing and hurtful.
I have good days where I choose to expose it and feel confident when I answer questions as to why I have a port, or what it even is. I also have days where I choose to cover it with clothing simply because I don't feel like showing it or talking about it. I try to stay proud of my body, embrace my port, and love it, even though some days I hate it.
This post is meant to educate the individuals who do not know what a port is, have never seen one before, and/or assume it is something it surely is not. It is also meant to bring into focus the emotional and physical path that brought me to requiring this port. Although I have cystic fibrosis, I am not defined by it. I encourage you to separate the two, just as I have. I hope that by exposing what seems to be minor, will shed major light upon this small, yet powerful mechanism in my body.
*The PowerPort* Implantable Port is a cylinder with a hollow space inside that is sealed by a soft top. It connects to a small, flexible tube called a catheter. When a special needle is put into the soft top of the PowerPort* device, it creates "access" to your bloodstream, meaning that medications and fluids can be given and blood samples withdrawn (BARD Access Systems 2007).