My Lupus Journey

It was December 15th 2017. I was supposed to be staring in my school play but instead I was home with the flu. It was a terrible flu with terrible symptoms: high fever, nausea, light-headedness, sore throat, cough, and puffy feet. Puffy feet! Who gets puffy feet with the flu? My puffy feet ended up leading to lab work, a hospital stay, and eventually a diagnosis of Lupus nephritis. Although being diagnosed with Lupus and getting the proper treatment was a frustrating and difficult time in my life, it also helped me to realize the importance of personal connection and human comfort.

Everything with my diagnosis and treatment happened really fast. After my mom noticed my puffy feet, she called in an appointment with our doctor. Once we got there, he ran a few tests in the office and could tell something was terribly wrong. He told us to leave immediately for blood work. On the way out of the office, I could barely walk and threw up on the way to the car. When we got to the lab, I needed help getting to the station and almost passed out after they drew my blood. After that, we went home and waited for the results.

That evening we got a call. Our doctor told us to go straight to the hospital because the blood work showed that this was not just a flu but something much more serious. When my mom told me, I cried. At this point I was so sick that I don’t remember much of what happened next. I do remember getting to the hospital, walking through the halls, two big metal doors, getting my fluid restricted, IVs, blood draws, and lots of tests. After a day or two, a doctor came in and asked to speak with my mom in private. When my mom came back, she told me that I had Lupus Nephritis, an autoimmune disease that affects your kidneys.

The first week of my hospital stay was filled with invasive treatments: a kidney biopsy, a medical port put into my body, plasmapheresis, a blood transfusion, a high dose of steroids, and a lot of new medicine. The Plasmapheresis felt like the most aggressive treatment I had. It involved a big machine that sat next to me for four hours and separated my blood from my plasma. The blood was taken out through my port, fed into the machine, and spun and separated, so that the unhealthy plasma could be disposed of. Then, my blood was combined with healthy plasma and put back in my body. I had to have plasma from forty eight donors for five days of plasmapheresis. After that week, while still in the hospital, I started my six months of chemotherapy. One week later, I was able to go home.

At home, I had to get used to a whole new dynamic. My mom had to measure out everything I ate. I had to take twenty three pills a day and get a weekly shot in the stomach to keep my hemoglobin up. It was almost more stressful being home than it was in the hospital because there was so much to learn. That week, my blood pressure kept going up and I was getting more and more swollen with excess fluid. I found myself back in the hospital. This hospital stay included: trying to reduce the fluid in my body, getting another dose of chemo, and lots of IVs. After three weeks, I started to lose the fluid and my body stabilized. Finally I could go home.

Over the next few years I had to learn to live with the restrictions of an autoimmune disease. One of the biggest things I had to get used to was my energy drop. I was a very active person before Lupus. I was always doing something, whether it be running around outside or working on a project indoors. After getting Lupus, my energy dropped significantly and I had a hard time doing the things I used to. It was hard because I still wanted to do what I had done before. I just couldn’t find the energy to get up and do it. Even standing up for a long time was difficult for me. It got better over time but I still don’t have the same energy I used to. Some days are worse than others and a part of me is always a little tired.

Another thing that changed after getting Lupus was eating. When I first got home from the hospital, it was a very stressful adjustment. My kidneys were still inflamed and I had to measure everything I ate. My mom weighed my fruits, measured anything that counted as a fluid (popsicles, ice cream, drinks), measured how much protein I had per day, and kept track of all the sodium I consumed. As my kidneys got better, the restrictions got lighter. Now I only have to be careful of how much sodium I eat. Even though I don’t have many restrictions anymore I don’t eat quite as much as I used to. I am either nauseous or just don’t have the appetite. Before Lupus, I was a really healthy person and had never even been to the hospital. Now I have to deal with all kinds of medical maintenance. I have daily meds, blood pressure checks, and frequent doctor’s appointments and blood draws. Now I have to be aware of any concerning symptoms like high blood pressure, joint aches, puffy feet, or anything else unusual.

From the time when I first got sick, through my treatment, recovery, and maintenance, what helped me the most was kindness from others and basic human comforts. I met a lot of people at the hospital, some of them weren’t that nice but others really made a difference. Kindness came in the form of packages to my hospital room. Kindness came when doctors took the time to explain things to me and my mom. Kindness came when people visited me. One of my favorite comfort items was a big stuffed fox, which I named Henry. I hated having an IV. It was always uncomfortable and I didn’t like moving my arm when it was in. So Henry was the perfect gift! He was just the right length to rest my arm on. He made me feel a bit more comfortable.

Another experience that brought comfort and kindness was a nurse named Bruce. IVs were my worst hospital experience. They were so hard to get in and everyone who tried either quit or caused me a lot of pain. Eventually, a special nurse was called to help and his name was Bruce. He came in with an ultrasound machine to help find the vein. It was especially hard because I was swollen. While he searched, he would talk to me and distract me from what was happening. It was still hard to get in but it was so much better than before. From then on, whenever I came back to the hospital for treatment, I would always ask for Bruce. He always tried to make his schedule line up with mine, even switching his day off one time.

Another amazing act of kindness during this time was from a dog breeder. I had always wanted a dog but now that I got sick, I wanted one even more. My parents asked for help from anyone who knew of affordable dog breeders. They were stressed about money because of all my hospital bills. They wanted to get me a dog to help me recover but were also worried about it being affordable. We ended up getting a response from a breeder who wanted to give me a dog. This breeder always tried to donate one dog from each litter to someone who could use some extra love. The breeder sent a few pictures of the puppy and I decided I wanted to name her Honey. Honey was a huge act of kindness because without the donation I might not have her. Honey provided snuggles and kisses while I had to stay on the couch to recover.

Lupus has changed my life. In a lot of ways it has made my life harder. I will never be like I was before. I will always have to get blood draws and take pills. I will always struggle with fatigue. And even now, I have to be extra cautious during the pandemic and stay isolated. But, even with all the difficulties, it taught me that kindness can go a long way. Without my Lupus experience, I would not have thought about how small comforts and simple kindness can make such a big difference. In fact, because of my time in the hospital, I realized how I could improve other patient’s hospital stays. By giving them items to decorate their rooms for Christmas, I could hopefully make them a little more cheery. Now, each year, I collect donations to buy Christmas Kits for two pediatric floors. This is something I do to help others but you can help others in your own way. It can be helping a friend, visiting your grandma, or donating to a helpful organization. The important thing is to think about what you can do to spread some kindness and bring comfort.