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We are grateful to be able to share stories from incredible patient advocates like Savannah Cooper. Savannah was gracious enough to share her experience learning to be independent with home infusion while pursuing and achieving her dream to be a professional musical theater performer in New York City in both written and video formats.
As a person who relies on regular IV antibiotics to fight chronic infection, Savannah learned how to become the best person to administer her own therapy, and her home infusion provider supported her by ensuring access to medication and supplies whether she was at home, at college, or traveling for performances. Home infusion providers provide specialized patient training and education on issues such drug administration, signs of adverse events, and maintaining their vascular access devices. As Savannah displays strength, passion, and determination in following her dreams despite any obstacles, she also acknowledges the support she received along the way, closing her video by saying, “having a home health team that is willing to go the extra mile has made all of the difference in my journey.”
My name is Savannah Cooper.
I’m a recent college graduate, the founder of a non-profit, and a professional musical theatre performer. I also happen to be chronically ill…
My journey with chronic illness started when I was born. I started dancing at three years old and found my second home in the dance studio. My love for dance couldn’t dismiss the extreme amount of pain I was in as a young child.
At seven years old I was diagnosed with Tethered Cord Syndrome and Ehlers Danlos Syndrome. There was finally an answer to the countless nights filled with pain and tears.
At that time in my life, I was trying my hardest to be a “normal” kid, but the pain I was feeling was causing me to feel like an outsider. I had successful spinal surgery and was able to return to dance classes soon after. I finally felt like my life was going to be on an upward trajectory, without surgeries, constant hospital visits, and endless pain.
In 2013 I tested positive for a kidney infection. It wasn’t uncommon for me to get a kidney infection, so there was not a severe sense of worry or panic. That infection would lead to recurring infections almost monthly up until 2022.
The only thing that helped these infections was IV antibiotics, but that also meant I would need to be admitted to the hospital with each infection.
There was no way I was going to miss dance classes, school, dance competitions, and starring in the school musicals to sit in a hospital room…
It may sound like a silly frame of mind, but performing and dancing was all that kept me motivated through these years of pain, hospital admissions, and unanswered questions.
When I had my first PICC Line placed, it was a life-changer. I was able to return to school, and live a semi-“normal” life while managing the infections with IV antibiotics. We brought my IV pump to the airport and fought to get it through security, so I could travel to NYC, and I was able to receive treatment for these infections at any time.
I ended up having over 5 PICC Lines throughout the years dealing with my infections. After a hospital admission with a severe kidney infection in 2017, my doctor recommended having a port placed. My body didn’t love the PICC lines, and this felt like a better option.
One of my first questions was…”can I dance with it?!” The port was placed in December, and I went on to perform with it in February! Navigating high school with chronic illnesses is not easy, and adding a medical device on top of things made for a lot of anxiety. I managed to push through, and continue chasing my dreams of becoming a professional dancer, singer, and actress.
During my senior year of high-school, I began the process of auditioning for colleges. I traveled across the country to audition for the top musical-theatre programs, hoping I would earn a spot in one. While auditioning for these programs, and finishing my senior-year, I was also making decisions about my healthcare.
How would I go to college out of state if I needed my port to be accessed by nurses? Who would be able to access my port? Where would I be able to receive my IV meds?
During one of my visits with my amazing team of nurses at University of Kentucky Children’s Hospital, the idea of learning to access my own port was brought up. I was terrified and didn’t think I would be able to do it.
At each visit, I would watch them carefully and begin learning the process of accessing my own port. One of my nurses took a mirror off the wall of the unit and brought it into my room. I stared at myself in the mirror and learned how to access my port.
I cried every single time they did it for me, so this transition to doing it independently was also incredibly emotional. I became more confident with each try, and finally became really good at it! My port is very difficult to access, and I’ve become the person who can do it the best.
With this confidence, I knew I could go to college and chase my dreams while managing my healthcare away from home. I was accepted into one of the top musical-theatre programs in the country (Baldwin Wallace University, Music Theatre). I knew I needed to trust myself and take this leap of faith.
During my four years at college, accessing my port in my dorm room became very normal. I was able to establish a routine that felt comfortable for me. Not many college students have IV antibiotics in their mini fridge, but that was my life!
My classes took place all day from 7am to around 4pm, and rehearsals for whatever production I was working on at the time would usually start around 6pm. I would have to masterfully navigate my day when I was dealing with a kidney infection. I would have to carve out time to go get a urinalysis at our on-campus health center, and wait for those results to come in. My amazing doctors at home were able to come up with a solid system of shipping my IV meds from Kentucky to Ohio. It was always tricky, because I had to pick them up as soon as possible–due to them being refrigerated. Once the medication would arrive at our school’s package pick-up, I would head over and pick it up. There were many times where picking up the IV meds was enough to just leave me exhausted for the rest of the day. There were a few times where I carried the boxes across campus by myself. When that happened, I felt incredibly frustrated that this was the life I was living. Once I got back to my dorm room, I would carefully unpack all of the supplies and begin the process of accessing my port. I’ve now had two ports, neither of which have had any infections. I credit my team of nurses at University of Kentucky Children’s Hospital for taking the time to diligently teach me the protocol and care needed to access myself for this!
Having a kidney infection wasn’t an excuse to stop my entire day at school. I still had to get up and participate in my classes, memorize material, attend rehearsals, and find time to study. My school bags were often packed with a laptop, character shoes, and extra saline and heparin syringes. I had to put in more effort than the average student just to make it through the day. It was a very isolating experience, but it taught me the importance of focus and dedication. I knew that if I put in the time and effort, it would one day pay off. Spoiler: it did.
I went on to perform in multiple shows throughout my four years WITH my port accessed. At this point, there was nothing holding me back.
During the summer of 2021, I performed in my first professional production with my port accessed. My amazing costume designer made sure I felt comfortable and confident onstage. I was able to take the stage with ease, only focusing on my job as a professional actress.
By sharing my story on social media, I have connected with many other young chronically ill people that have medical devices. We are able to connect about the ways we have learned to manage our healthcare and share stories about our accomplishments.
I’m now living in New York City and living the life I’ve always dreamt of. I’m represented by an incredible team of agents, auditioning for amazing projects, taking classes and lessons, and working as part of a marketing team for an arts organization.
I’m now living in New York City and living the life I’ve always dreamt of. I’m represented by an incredible team of agents, auditioning for amazing projects, taking classes and lessons, and working as part of a marketing team for an arts organization.
This may sound like I have it all figured out…but that couldn’t be further from the truth! I’m now learning to navigate picking up IV antibiotics in a big city, finding physicians in a new community, and managing my healthcare in a new state. I wouldn’t be here today without the doctors that believed in me, and my dreams. Even at my sickest, they were willing to do whatever it took to get me onstage. I am grateful to have a team of doctors that are willing to think outside the box to ensure my success and happiness. Most young patients like me aren’t given the opportunity to learn to be independent and access their port. They trusted my determination and maturity, and found a way to allow me to achieve my goals.
I couldn’t finish this without thanking my parents and younger sister, Sophia. They’ve been with me through every part of this journey, and are the reason why I’m able to get up on the hard days.
This journey has been far from easy, but by sharing my story and connecting with others, I truly feel like I’ve found my purpose.