What It’s Like Starting a New Infusion During COVID-19

I won’t lie. Sometimes it’s kind of fun to freak people out or make myself sound a little B.A. by saying I live my life with a 1-and-a-half inch needle sticking out of the middle of my chest. I see your baby tattoo machine needle that lasts a few minutes or hours and raise you this. I also have radioactive fluid pulsing through my veins like a superhero! I have a device called a mediport surgically implanted right in the middle of my chest, connected to my heart, which kinda sounds like Tony Stark’s Arc Reactor. That earns me some cool points with my nephews and nieces.

I turn what most people would view as a negative into a positive. If I saw it as a negative and I have it in me 24/7, does that make my whole life negative and depressing? There is a deep philosophical thought for you. I choose happiness even in the tough times, so I don’t even need to take time to think that one over. All of this is a coping mechanism for handling the fact that I always have an IV feeding me life-saving fluids, medications, transfusions, antibodies, vitamins, and the like and also working to give blood to update doctors on my current medical status. I’m used to the infusions. I’ve done them for years — since I was in pediatrics. I’ve switched medications. I’ve rotated doctors. I’ve changed hospitals and treatment centers while infusions remain a constant in my life.

But I haven’t done so in the middle of a pandemic.

Things are different.

The world is different.

Although I’m continuing my at-home treatments and treatments at my current infusion center, I’m adding an additional arthritis medication that is given by intravenous infusion. Here is a list depicting some of the ways in which starting a new infusion medication during the COVID-19 pandemic is different than starting a new medication at any other time.

Choosing to Start an Immunosuppressive Drug During a Pandemic

The medication I am starting fundamentally weakens the immune system in the hopes that this process stops your immune system from attacking otherwise healthy tissue in the joints and organs. For obvious reasons, this is not ideal, so the pros and cons have to certainly be weighed extremely carefully. That is on a normal basis. Factor in a global pandemic and the stakes become that much higher and the decision becomes that much more hefty. Weakening the immune system of one with immunodeficiencies only heightens the risks of contracting a virus, thus my decision to begin such a medication (not to mention continuing others) during the COVID-19 outbreak was only made because it was deemed necessary by a panel of doctors.

Elevators

The first indication that entering any large hospital was different now than with prior visits was the sign that greeted us at the parking garage. Where typically these lifts are jam-packed tighter than a can of sardines and you have to wait a couple of cycles to be able to find space to fit a wheelchair in (and even then it’s an uncomfortable game of Tetris with people filling in the gap above, below, and all around you and your chair), today there was a sign. The sign read, “Remember to practice social distancing on the elevators: 6 feet. We recommend two people per elevator at a time.” I couldn’t picture an elevator with such high foot-traffic having only two passengers, and if it did, I would then imagine the wait time to be elongated, yet I was met with no lines and two completely empty elevators. It seemed as if no one wanted to be in a small, confined area with stagnant air (understandably), but as a wheelchair user, I had no choice but to use the elevator.

Waiting

All patients were directed to wait in their cars in the parking garage until their appointment. Gone are the times where you must arrive at least 15 minutes early and if you don’t, you are late. Once your appointment time rolls around, a nurse calls to either let you know to come to the entrance or to let you know that your doctor is behind and that they will update you when they are ready for you to come. If you arrive at the entrance early, you are told to go back to your car (preferably) to wait or are redirected to an outdoor waiting area, reminded to practice social distancing, and told that if you become exposed it is now at your own risk.

No Visitors, Not Even Caretakers

Currently, to minimize the risk of exposure and transmission of the virus, only patients are allowed inside the hospital. Those individuals needing a caretaker are met by a nurse who meets the caretaker at the entrance. Typically, whether or not a patient requires help for completion of ADLs (activities of daily living), they are allowed to bring someone with them for comfort, for help, so the person driving them doesn’t have to leave and come back, etc. but things are different now and this is an attempt to keep the greatest number of individuals safe.

Gearing Up

Whereas I have been wearing a face mask for years, everyone is now required to wear one within the building and within so many feet of the entrance. It is actually nice to see this rule being enforced since so many of us receiving infusions or transfusions have immunodeficiencies. It is a comforting safety net.

Pre-pre-screening

Prior to receiving infusions/transfusions, patients typically go through a pre-screening process where they are asked pages upon pages of questions about seemingly everything under the sun, have vitals taken, do bloodwork, go through medical history, and discuss their recent overall history. Since the outbreak, before even reaching that step and before even entering the front doors, patients are screened. There is a screening post outside of the front doors to the building. We are asked a list of questions, sign waivers and forms, and have our temperature taken. The temperature is taken with a thermometer resembling a radar gun that merely hovers near your temple so your face mask can remain firmly in place and the proper 6 feet of distance remains between patient and nurse.

Sanitization

Surfaces, including sign-in pads that always worry me with having immune issues, are being sanitized between each patient. Doors are not being touched, pens are sanitized or patients are given a fresh pen to keep “as a souvenir,” chairs are wiped down after people have sat in them, blood pressure cuffs are single-patient-use, and the list goes on. If a surface can be cleaned, it is cleaned. I don’t hate it one bit.

Medication Shortage

There is a shortage of certain medications due to companies switching production and also from treatment of the virus, so this affects the medications available and also how the medications that are available are administered.

Post-Infusion Side Effects

Even this one is different, but perhaps for the better? Typically the few days following any infusion aren’t the ideal day(s) to be planning a party or running a marathon (some are, of course, worse than others), but adding in my slew of other diagnoses makes it rather hard to function. I try to hide it and put on a great facade the majority of the time, but on a fundamental level, there are certain side effects I can’t hide. This makes being stuck in the house actually kind of helpful. Reasons to leave the house are mostly canceled, so I don’t need to worry about that aspect with this new infusion. I am truly able to recuperate and recover properly without feeling guilty and any “essential” task has been transitioned to “at-home” mode — which works for me!

Post-Infusion Side Effects — Again

From a different perspective, however, starting a new medication during a pandemic can be confusing when it comes to reading the side effects. As a patient, you have to play a new, not-so-fun game called “side effect or symptom” and hope beyond hope that you didn’t catch the virus when you left the safe haven of your home quarantine, because in an attempt to get better, you may have actually gotten more sick.

Let me just end by saying, things are different, there is certainly pre-planning involved, but having the new infusion process run like a machine made me as a patient feel safe and clean the entire time, which is saying a lot in this day and age (and, let’s be real, as an individual with immunodeficiencies in general). I am so thankful to all of the healthcare workers and other individuals who work so hard to protect patients like myself and make us feel comfortable starting new (and worrisome) treatments during such a scary and chaotic time. It is because of the nurses, doctors, researchers, janitorial staff, and other workers that these operations are functioning so well, and it is much appreciated as we all acclimate to the differences we are facing.

For more on the coronavirus, check out the following stories from our community:

• 10 Face Masks People With Chronic Illness Recommend
• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19
• I’m Afraid I’ll Be Told to ‘Sacrifice’ My Health for COVID-19 Patients
• Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages