...sometimes the hardest thing and the right thing are the same.

I started to write this as a Facebook status, and then realized it's not something I can talk about in a matter of sentences. So I'm going to write a blog for the first time in forever because well, I can and because I need a reason to procrastinate on studying for my midterm.

On August 29th, I was admitted to the hospital for a tune up. This wasn't planned and definitely not expected or wanted. My lung function and my weight were down. My PFTs didn't respond to oral IVs and steroids. I was starting a new semester and a new job. Flu season was approaching. Too many things going wrong and not enough going right, so I agreed to be admitted. My doctor didn't want to take a risk of me getting sicker and needing a longer, more serious admission later in semester.

This was my first admission to the adult ward at Portsmouth Navy and goodness, was it an experience. My last 19 admissions were to Pediatrics, with nurses that know me and love me. Not to say that adult nurses don't care about their patients, but when you're 15 years old and admitted to the same ward 3-4 times a year, people notice and people care. They watch you grow up. They go out of their way to make sure you get not only what you need, but what you want. They become your friends. When I was at the hospital for an appointment, I would go upstairs to the ward just to say hello. I make cookies as a thank you after every admission. As messed up at this is going to sound, one of the safest places in the world for me was on that ward. Some of the worst days of my life have been sitting in one of those hospital beds, but the people have been nothing short of amazing through each and every one of them.

Moving to a new ward with new doctors, new nurses, new corpsmen.. I was terrified. I didn't know what to expect. I also didn't even know I was being moved until I got to the hospital to check in, so I felt blindsided and unprepared. Unfortunately, my first experience was rough.

There are several policy differences between the wards. One of these is that the medical team is responsible for multiple wards, unlike Peds that has a dedicated team. This meant the care was less personal and less involved than I was use to because they had a much larger work load. Completely understandable, but it took getting use to, especially since they were already strangers to me. There were also some ethical and legal issues regarding patient confidentiality and paperwork, but I won't go into details. The hospital administration has taken appropriate action to the best of their abilities. While I'm sure that no one had bad intentions, this admission was really just not good. I did not feel safe and I am very anxious to go back the next time I need a tune up.

During this admission, I also experienced one of the most difficult procedures I have to date with my health. In an attempt to get a picc line placed, my radiologist discovered that both my right and left subclavian veins are 100% occluded with scar tissue and blood clots. My body has recanalized smaller veins AROUND the main one to allow blood to continue flowing. I laid on a surgical table for almost two hours with arms straight out. Laying flat on my back often makes me cough, but because my upper arms needed to stay sterilized, I wasn't allowed to move my head or chest, which makes it very difficult to get control of my cough or clear the mucus. It took my doctor multiple lidocaine shots, inductor needles, guide wires and catheters. At one point, there was an inductor, a guide wire, a catheter for dye contrast and a picc line all in my vein at the same time. And yeah, basically... for lack of a better term, I felt like I was being crucified. While not an excessively painful procedure, it was incredibly uncomfortable and scary. Definitely not something I want to do again.

One of the 15+ PICC lines I've had in the past

They were able to get a line placed, but it wasn't safe. The catheter was only about 7-8 inches long and went to just inside of my shoulder joint. It is suppose to be close to 14-15 inches and reach my heart. Because the end of line was still located in a smaller vein and not my large subclavian, it was much riskier to use because the potency of the medication can damage smaller veins. Years of picc line access have taken a toll on my body and after a lot of discussion, my doctors, Mom and I have agreed that picc lines are not an option anymore. I knew this day would come eventually, but I was really hoping it wouldn't be so soon.

Unfortunately, since I will still need IV antibiotics 3-4 times a year, I can't afford to NOT have access. I met with my surgeon yesterday to sign pre-op paperwork to get a medi-port permanently placed in my chest. I will be having surgery on Friday morning. This decision has not been an easy one. I have a lot of friends with ports and after talking with them, I know that it's going to be very helpful, but I can't help but be scared, frustrated and sad.

I'm scared of what it will look like because let's be honest, I'm a 22 year old girl and I do care about my appearance. I'm petite and it's going to be visible. I had a central line in my chest for almost four years in high school and I remember constantly tugging on my shirts to make sure it wasn't showing. I didn't want that to be the first thing people noticed. I remember shopping for prom dresses that covered it. I just wanted to be normal and I felt like having a IV line hanging out of my boob screamed "HEY LOOK AT ME." I have a gtube in my stomach, but unless I'm wearing a bikini, no one ever sees it. To me, the port is different because it will show in regular clothes. I try not to be defined by disease, but when you have such a visible and constant reminder, it's hard. Unlike my central line, the port is under your skin but there will be a bump that sticks out about the diameter of a nickel. And you will probably be able to see the actual line as it goes over my collar bone. When I need IVs, I will use a needle to access the port and it will stay in place for several weeks at a time. It's much less discrete than a central line, but still, not ideal.

I'm frustrated because I feel like my body has failed me, yet again and I have no control. There are some things with my health that I can control. I can do my respiratory therapy to maintain my lung function. I can eat healthy to gain weight. I can manage my diabetes. But there are some things that I can't do a damn thing about. There is no amount of preventative care that could have stopped this. There is no medicine I can take, no treatment or procedure I can agree to reduce the years of scar tissue in my veins. I just have to accept it. And that sucks. I feel trapped inside this mass of tissues that have their own agenda and it doesn't matter how "good" I am. Things will always go wrong.

And more than anything, I'm sad. First because I hoped and wished that I wouldn't need this. I wanted so badly to be like some of my friends who are well into their 20s and 30s, even 40s and still get picc lines without any issues. I wanted so badly to be able to get picc lines when I needed them without all the hassle. A friend of mine got a picc a few weeks ago and literally went to work afterwards. In, out, done. Just like "oh hey, let's thread this piece of foot and half long piece plastic through your arm and chest to your heart like it's no big deal. Don't forget to grab a gold sticker on your way out!" Haha. It probably sounds ridiculous, but I'm honestly jealous, because yes, I wanted to be "lucky" and have it "easy."

And second, I'm sad because there are moments in life where things, good or bad, become real. The moment you walk across the stage to graduate and realize all the long hours of studying were worth something. The moment you hold a newborn baby for the first time and fall completely in love. The moment you say goodbye to someone as they leave for a deployment and you know you might never see them again. This is one of those moments, and it's not a happy one. It's a very big reality check that I am sick and I always will be.

Having cystic fibrosis isn't a one time or sometimes thing. It's an everyday thing. But most days, it doesn't have to be an all the time thing. That probably sounds like a contradiction, but it's true. You can be sick every day of your life, but you don't have to be sick ALL the time. You can live a normal life. You SHOULD live a normal life. But if there's anything that being sick has taught me, it's that some days, you do have to make decisions that aren't normal. It's not normal to be a senior in college and choosing to have medical devices embedded into your body. I should be filling out job applications, not consent forms. This decision is hard, but it's the right thing to do. It's the best chance I have to receive the best possible healthcare, to ensure the best possible future for myself. I don't want to walk into that hospital at 6am Friday morning, partly because 6am is an ungodly hour but mostly because I'm going to walk out a different person. Physically, I'm going to have a new, shiny, purple best friend adorning my chest wall with a scar to prove it. And emotionally, I'm going to have another figurative notch on my heart from the pain of knowing I'm in this thing for the long haul. I don't want to do it, but I'm going to. Because we don't always get what we want in life, but we do get what we need. And what I need right now is a mediport.