By: Chloe Moody
One of the most important lessons I’ve learned as a life-long chronic illness sufferer is self advocacy.
If you don’t let it be known what your body needs to feel better and improve your quality life, how will it get done? I am a firm believer that it is absolutely okay to tell your doctor exactly what you need rather than letting them decide for you. This was the exact mindset I had when I made the decision to ask my GI doctor for a port.
As someone with a short bowel, chronic dehydration is a real problem for me. As a very active person who enjoys exercising daily, it makes things even more complicated. I had an entire list of reasons why getting a port would be right for me: no more ER visits for fluids, no more IV’s in my overused veins, fewer hospital visits for blockages… I could go on and on.
Even still, it took my GI doctor about six months to even consider the possibility, and two more ER visits during this time.
Was he worried that I was too young for the responsibility? Was he concerned about the risk of infection? Did he think I was taking this decision too lightly? I will never know why it took him so long to put that order through, but I like to think my persistence and courage to advocate for myself and insist what needed to be done, played a huge part in his decision.
The second after I got the green light, I scheduled an appointment with interventional radiology to get that port.
Of course, my appointment happened to coincide with the growing severity of the Covid-19 pandemic and the shelter-in-place order in the state of California.
I relocated to my boyfriend’s house where it was safer, and being the amazing man that he is, he agreed to take off work to drive me two counties away for my procedure. What I didn’t know until we got there was that he would be taking the day off work to sit in his car for five hours during my procedure. The hospital wasn’t allowing anyone except patients inside the building. I had to swallow my pride, and say goodbye to my boyfriend in the lobby.
Needless to say, I was terrified.
During my twenty years as a patient, I’ve been poked and prodded and cut into more times than I can count, but I have never once had to do it alone. Until now.
I had to be put under conscious sedation in the OR, which meant I was entirely awake. I could see all the equipment and instruments in the operating room, I could feel the hard metal of the operating table, I could smell the overpowering scent of disinfectant and propofol.
I am someone who suffers from PTSD, and operating rooms are a huge trigger for me. In that moment, I was taken back to my G-tube changes as a child, and I became even more anxious.
My biggest fear was that someone would assume the anesthesiologist had given me the drugs and begin making an incision.
Miraculously, I made it through. And I made it through the two hours in recovery when my blood pressure wouldn’t come up. And I made it through two days of excruciating side effects from the propofol.
In the end, I learned that I’m stronger than I think I am. I have heard way too many times from comforting family and friends to “stay strong,” but what they can’t understand is that when it comes down to the moment when you feel like you just can’t do it, you don’t really have a choice.
That day I made a choice to be strong, only it wasn’t really a choice. It was what I needed to do for myself.
It has been over a month, and I am so glad that I have my port. It has already afforded me so much freedom and independence, and greatly increased my quality of life. I am so happy I made the decision for myself to push for what my body needs, and I will continue to do so in every aspect of my healthcare.