I first started getting infusions at Avista the very week we moved from Atlanta, GA to Louisville, CO eighteen months ago. I had visited the infusion center six months prior to that, as picking a hospital would have a major impact on the area we were house hunting in. When my husband and I walked in, we were immediately warmly greeted and shown one of the treatment rooms, where we visited with the nurse. Right away we could tell that there was something special about Avista's Infusion Center. For better or worse, I am in a unique position to evaluate medical units and medical professionals. For the last twenty years, since I was fifteen, I have been battling life-threatening chronic illnesses. I have had over seventy-five surgeries, I travel to numerous centers of excellence for various treatments and surgeries, and there have been years where I was inpatient for well over half the year. I have been on the receiving end of some of the absolute best medical care, and unfortunately for me, also some of the absolute worst. And when I am not being a "professional patient," I do part-time freelance work lecturing at medical, nursing, pharmacy, and PA schools, which means I meet and get to know a significant number of medical professionals. Between my personal medical needs and my professional commitments, it feels like I am almost always interacting with medical professionals, which gives me a rare perspective.
We were finally able to move to Colorado because my health had greatly stabilized over the two years prior to our move. I was only needing my routine follow-ups with doctors, and only spending one day every other week at an infusion center. I was about as stable as we could ever hope for. Before our move, we began preparing to start over with new doctors and new hospitals to build my medical team in preparation for the possibility of my health taking a downturn at some point in the future. This task was something that would take a while, as my medical situation is exceedingly rare and extraordinarily complex. But as I said, I was the most stable I had been in over a decade - and wasn't anticipating that changing - so I felt like I had plenty of time.
As is so often the case, life had other plans for me. Only a month after our official move to Colorado, I ended up in the hospital with a DVT right near my heart and developed a severe case of Superior Vena Cava Syndrome (which would bring a myriad of issues and complications that no one could have imagined in their wildest dreams). I share this because in hindsight it was the moment everything changed. It was not just the moment my health destabilized but perhaps even more tragically it was also the moment my dream of living the semi-normal life in Colorado that I had been dreaming of for so long came crashing down. I was scared. I was sick. I was heartbroken. I was missing my friends in Atlanta. I was doing whatever I had to just to stay alive, and some days I just wanted to give up. My new conditions brought a lot of new things with them that required a variety of new treatments. I was now needing to be at the infusion center three to five days a week for most of the day each time. It was during this time that the nurses at the infusion center became the greatest source of support to not only me but also my husband and parents. It was a really challenging time, I hadn't even finished putting together my new medical team, let alone establishing much of a support system. But without hesitation, my nurses rallied around us and provided whatever I needed on any given day. Some days that meant helping me change my surgical dressings or helping me out of bed and walking me to the bathroom because I was too unsteady to make it there on my own; some days that meant making me laugh; and some days that meant just giving me a big hug and crying with me.
In the year-and-a-half I've been going to the infusion center I've had fourteen major surgeries, four new diagnoses, thirteen blood transfusions, three ambulance rides, eleven hospitalizations, two major internal hemorrhaging events, seven trips to the ER, five life-threatening infections, six months of IV antibiotics, a middle of the night helicopter transfer from Avista's ICU to UCH, four ICU stays, a Learjet ambulance flight across the country (with a ventriculostomy in place between emergency brain surgeries), a broken foot with two-and-a-half months on a scooter, and one global pandemic (which was extra frightening given my severe immunodeficiency and lung issues placing me in an extremely high-risk group). I am no stranger to difficult times, but the last eighteen months have been some of the hardest I've ever had. I can say without hesitation that without the infusion nurses and all of their support, I would have quit. To put it more bluntly, without them I don't think I would be here today — they made what felt like a completely unbearable series of events bearable. It has been such a heavy load on my shoulders, but I've never felt like I was carrying it alone. My nurses have always helped shoulder the burden.
Their care shows up in many different ways, from traditional nursing duties to things like delivering homemade soup when I was recovering from a surgery, giving me pep-talks when I was an inpatient at Avista but needed to be transferred to a bigger hospital because the situation was so dire, FaceTiming me and sending surprises when I've been at different hospitals across the country, having a continuous text thread with the whole infusion team because they always want updates following any procedure, coming to visit me in the ER and holding my hand when I was getting uncomfortable procedures done, or surprising me with cake on my birthday, and these are only a few examples as I could write an entire book about the ways they've helped and supported me, but I can say, without a doubt, that this is the very best group of nurses I've ever had.
Here is the thing about chronic illness, especially life-threatening ones: the grieving process comes and goes in waves. You can be fine one minute, and the next something reminds you that you are not in control of your life anymore. You can choose how to react to what's happening to you, but no matter how much you want something or how hard you work for it you no longer have the final say - your illness does. This means the grieving never ends because every time there is something in life that you've worked for or wanted that doesn't happen because of your illness you have to work through the whole process again to reach acceptance. Aside from other people in similar circumstances, very few people can sincerely understand; but my nurses, who at some point became more like my family, truly get this. They remind me I don't have to be strong all of the time, that it's okay to be sad or angry when bad things happen, and when I stumble or fall they're always there to catch me, both literally and figuratively.
In medicine, there are different ways to care for a patient. There are cures, which is obviously the most desirable option, and when there are no cures often there are treatments to make things more livable. When there are no cures and no treatments available, medical professionals often feel helpless and feel like there is nothing they can do for their patients, but there are always things doctors and nurses can offer: their humanity, compassion, and empathy. For many patients, at the infusion center, their conditions don't have cures, and some of them don't even have treatments, but fortunately, the infusion nurses always offer their humanity, compassion, and empathy, and for those of us who are suffering, that makes all the difference in the world.
Things are still hard, my doctors are still trying to solve some big issues, I have doctor's appointments every week, and I'm at the infusion center for four to six hours nearly every day for a variety of IV meds and fluids. Medically things change very quickly for me, I can wake up fine in the morning and be admitted to the hospital by the afternoon. Sometimes I find out I am having surgery on the following day. I have no idea what's going to happen or what's coming next, and I have no idea how long I'm going to live, but what I do know is whatever time I get on this earth it will have been made better by the infusion team. I do not think I will ever be able to adequately convey the difference the team of nurses at the infusion center has made in my life. But I hope they know how deeply I appreciate them, and that they know that without their care and friendship I would have stopped fighting this past year. As the saying goes, "not all heroes wear capes, some wear scrubs." Not only are the nurses at the infusion center heroes, but they are also my angels on earth, and perhaps most importantly, I am privileged to be able to say they are my friends.