“With your port, I forget you’re on IVs- that’s not fair ☹”

I received that text message a couple months ago during a conversation with my older sister, Jessica, who has a way of casually speaking in a manner that people never forget. Jessica talks and in return, we listen, remember, and bring up her wordy influence weeks later. We always joke in our family that she holds so much power in her words without even meaning to do so, and now, she has done it again.

Jess’s reply has floated around in my mind for some time now, and it returned to cognition two weeks ago when I accessed my port and began home IV antibiotics for the second time in nine weeks. Her words weren’t fully absorbed and interpreted at the time of reception and simultaneous iPhone ping, but I can make assumptions based on the context of our conversation and our relationship. My assumptions are as follows: a) because my port is located on my ribcage, covered by clothing, and more easily hidden, people often forget when I am on IV therapy and b) it isn’t fair because IVs require a significant dedication of time, persistence, and infirmity in the hopes of healing. Maybe, she meant it wasn’t fair because IV-laded Janeil deserves more hugs, more leniency, more “How are you feeling?”, more prayers, more flowers from Peter (hint), more rest, more understanding, etc- all the arbitrary gifts of inpatient care?

Although, I try to avoid using the word “fair” in conjunction with my CF because no good comes from comparison and wishing to be displaced from your reality, I do think it is “fair”. I agree, IVs are a serious commitment and there should be a level of forgiveness towards the person injecting poison into their body multiple times a day, but home IVs are a privilege and the benefits outweigh the anonymity, in my opinion. It is a privilege to stay home, to continue working, and to live without the restraints of hospital walls. Receiving the same treatment that causes many patients to be stuck at Hotel Rainbow’s Babies & Children’s Hospital, Floor 7, for weeks, sometimes months, from the comfort of my own surroundings, allows me to feel free. Acting as my own head nurse, I decide when to hook-up, what to eat, where I can and cannot go, and who to see. I govern the controllable that inpatient care can unfortunately strip away from its guests.

On home IVs, I am privileged to wake up next to my husband after a night tucked in our bed, instead of the resident asking me if I’m still coughing at 5:30am (yes- the answer is always yes). I receive a visit from my nurse twice a week, sometimes at my house or my work, to draw labs and monitor my kidneys against the force of the powerful drugs. During work, I flush, hook-up, flush, hook-up, flush, hook-up, flush, flush, and un-hook while little fingers pull my tubing. I answer calls from the homecare pharmacy and schedule delivery dates for bubbles of antibiotics to be dropped at my doorstep. I visit my doctor every week and decide if we should push on or call it quits without knowing if we succeeded in pacifying the infections. Weeks on home IVs resemble a compliance-marathon resulting in mounds of medical trash, aggregating co-pays, and days packed with responsibility. Sometimes, I feel poisoned and weary, but mostly I feel fortunate and comforted that I am able to live my days as if there wasn’t an intravenous line hanging from my ribs concealed by my cozy sweater.

If I know anything about maintaining my positive mental status and living with cystic fibrosis, it’s that I desire to feel free- to enjoy my days and accept the challenges of caring for myself with grace and coordination. Feeling untethered seems like a fair trade-off to me, even if onlookers are unable to see the invisible hospital band marking me as a patient. Thankfully, at this point, treatment administered at home works more effectively than when I am admitted. Until the day comes when inpatient care is the best option, I will enjoy my freedom for myself and all those living on Floor 7.

I have toured New York City, visited the beach, celebrated my own bachelorette party and friend’s birthdays and weddings. I have attended sorority events, worshipped at church, presented college assignments, gone on dates, and enjoyed every holiday imaginable all while on home IVs. I can meet my dear friend, Alexandria, for coffee to catch up and chat about the time we once lived in Little Italy as the antibiotics, Zyvox, Tobramycin, and Cefepime, infuse into my bloodstream. I have the ability to live my life while simultaneously fighting the disease that threatens to take it away. This type of reality makes me smile and seems victoriously fair, don’tcha think?

Three cheers to home IVs, to modern medicine, to breathing, and mostly, to living!