Consortium Conversations: Kayla Aalpoel
Kayla Aalpoel is the definition of perseverance. She’s an incredibly bright young women with big plans for her future. She is a skilled athlete, a daughter, and a friend. And, she is a CIIC Member’s patient who is not letting her diagnosis stop her from dreaming big and achieving her goals.
Kayla lives in Washington State and has been a patient of Dr. David Elkayam for many years.
Q: How did you and your parents locate Dr. Elkayam when looking for a doctor? What has been special about him and his team?
A: We located Dr. Elkayam through my primary care physician, Dr. Margaret Burden, from Lynden Family Medicine. He and his team have been such a special part of my life because they never gave up on finding my diagnosis.
There were some really difficult times throughout my childhood and without their support and continuous dedication to help me, I wouldn’t be the strong and open young woman I am today.
Dr. Elkayam and his team have always been so uplifting and will never stop searching for better ways of life for their patients. Without them, I wouldn’t be fulfilling my goals and accomplishments.
Q: At what age were you diagnosed with CVID, Cytopenia and IBD? Can you share more about your medical diagnosis?
A: I was diagnosed with CVID, Cytopenia, and IBD when I was in the 6th Grade. This was definitely a hard time for me because I was just entering middle school. I was born with my medical condition, and it took years to diagnose. My doctors ran so many different tests and tried a lot of treatments until we found the right one. I spent time in and out of hospitals, bloodwork centers, and doctor’s offices. In the end, it was so worth taking some years of my childhood to figure out my condition before I reached my teens and eventually adulthood.
Q: What impact has this diagnosis had on your family? What adjustments have you had to make?
A: The diagnosis has totally changed my life and the lives of my family. Before I was diagnosed, we were always so worried about my physical weakness and the illnesses that I would catch from other people yearly. Being exposed to a simple illness that regular immune systems can fight off quickly was different for me. Since my immune system is compromised, my body couldn’t fight off the illness quickly. Instead, the symptoms were worse than normal and trying to fight it off made me weaker. I didn’t have a regular childhood because I was always home with an illness. Vacations, public gatherings, hanging out with friends, exploring sports and clubs, and taking an adventure in the outdoors were all things that were limited to my family and I before I got diagnosed.
When I got diagnosed, I finally felt like I wasn’t being held back by my CVID and I finally wasn’t holding my family back from fun adventures.
Ever since I got diagnosed my life has been completely normal. If I didn’t talk about my complications or what I went through, people wouldn’t have any idea. I am so grateful that I can wake up and know that each day will be a different adventure, and that I can live each and every day to the fullest. I can perform and take on things that I didn’t know were possible.
I have learned that hardships don’t last forever, but what does last forever is the willingness to stay strong and how you choose to fight back against it. The best advice that I could give to other families and children that are dealing with the same thing that I went through is to never get defeated and never give up on pursuing a life that is fitted for you. Don’t let a bump in the road ruin your dreams of becoming what you want to be!
Q: Can you tell us about your daily life with CVID, Cytopenia and IBD? How has your routine been impacted overtime? What adjustments have you had to make? Any milestones in your journey that you’d be willing to share?
A: My daily life has been completely normal since my diagnosis. I live my life like the average person would. My routine has changed since I have gotten older because I have learned how to deal with the changes in a much better way.
I take four to five hours out of my day every three weeks to get my infusion. It usually occurs on a Monday, so it doesn’t impact my running schedule and schooling.
When I get my infusion on a Monday during school hours, I always make sure to get my schoolwork either the Friday before the weekend or that Monday morning before my treatment starts so I don’t fall behind in any of my classes. This has been very important due to the advanced classes that I was taking this past year. Even during the summer when I am still doing summer cross country training, I choose to keep it on the same day. l always get my infusions in the early morning so I have my evening to hang out with friends and family, run, and enjoy the amazing nights.
I also find that with my condition, and involvement in athletics, it is harder to keep myself hydrated. So having my infusion in the morning, I find that I am more hydrated since I hydrate the night before and don’t waste it during the day performing taxing activities.
I have found that having a solid schedule is way easier than going with the flow with my condition. I get the medicine every three weeks during my infusion, but I also do things outside of the doctor’s office, on my own, to make the experience better for me and my nurse. Hydration, solid sleep, good nutrition, and involvement in activities that make me happy and help me feel great.
Q: Can you can talk about the pros and cons of the various types of infusions you’ve had along the way (IV and SQ), the complications and headaches?
I personally have tried both IV and SQ. Since I am a runner, I prefer the IV every 3 weeks instead of the SQ every week.
I stay incredibly active and don’t have much added body fat, which SQ is better for. I tried SQ injections in my legs and my stomach more than once, and the fluid buildup wouldn’t go away for a solid week after my treatment. As soon as it would go down, I would have to get another one. The fluid buildup was also very uncomfortable when I tried to run afterwards.
The image of what my stomach looked like bugged me too. I didn’t like the buildup showing through my clothes. I might try SQ injections again in the future, but it would have to be after my college career is over.
As for the IV, I have been doing this treatment since I first started. I have been used to needles my whole life, so that was never a concern of mine. I would recommend IV infusions to anyone, especially if you want to perform in athletics and stay active.
I know that one of the biggest hesitations that people bring up when it comes to IV infusions is the fact that lots of children, even teenagers my age, have small veins. Especially young girls. I personally have small veins, but I have never had an issue with starting an IV as long as I am hydrated enough. I drink lots of water which makes the process way more enjoyable. If you are willing to hydrate yourself, the IV infusion shouldn’t be an issue.
The only side effect that I have with my IV infusions are heat flashes towards the end of my infusion. They don’t last forever. I promise, they are very minimal. I have never had headaches, chills, nausea, or any of the other side effects that could affect the rest of my day.
Q: What impact do sports have on your life?
A: Sports have had a huge impact on my life. Not only do they help me define who I truly am, they also help me limit the amount of stress I face within a given day. I am a cross country and long-distance track and field runner. I always tell people, “the longer, the better”. I race throughout the entire year in the 5K, 3200m, 1600m, and 800m. I plan to run all those events, and the 10K, 6K, and possibly the steeplechase, at the collegiate level.
My love for track and field started in the 7th grade after I was diagnosed and could actually participate in sports once I started getting my infusions. I knew from that point on that I was going to be a runner. I have tried multiple different sports but didn’t find the love for any of them like I do in my running. I won first place ribbons in 7th and 8th grade for the 1600m, 800m, and long jump. I tried cross country for the first time my freshman year of high school. It is definitely my favorite because I like the longer distances and the changing of courses every time I race.
I am now going to be a senior in high school and altogether, even through COVID, I have stayed dedicated to my passion and have won a total of 15 medals, 12 ribbons, and two all-state plaques representing two top 12 finishes at all-state level.
I have competed outside of the regular season as well, performing in Idaho and placing third in my race. Later this year, I will be heading to California to compete at the Footlocker Meet in December. I train by doing two hard workouts a week and running seven days a week. I run high mileage – anywhere from 50 to 60 miles a week – to prepare myself for upcoming seasons.
Without my infusions, I wouldn’t have been able to reach my dreams of becoming a competitive, all state long distance runner, and later, carrying out my running at the collegiate level. Being a runner is more than just a passion, it is a way I can express who I am outside of my CVID and a way to portray that nothing will ever stop me from becoming who I want to be.
Q: Have your sports helped you cope with your diagnosis? Have they been limiting in any way? Have you had to make adjustments to your training schedule?
A: Sports have definitely helped me cope with all the new changes and my diagnosis. Before I was diagnosed, I couldn’t really do any of the sports that really interested me. Ever since then though, sports have given me a sense of power and control in my life. When it comes to my health, I can’t always control and predict on what is going to happen next.
I haven’t had any limitations when it comes to sports since I started getting my infusions. I have a great amount of energy and my immune system is a lot stronger than it used to be. I do experience a little fatigue when I am coming up on my three-week mark post-infusion, but after I start my next three-week cycle, I am recharged. The medicine helps with fatigue and tiredness every once in a while.
Q: Favorite school subjects? Teachers that inspire you? Post-high school goals.
A: My favorite school subjects are mathematics and science. I really like what those two fields bring, the aspect of discovery, and the differences among the various lessons. In science, I love learning about discoveries, advancements, and how history can help create something new that can save lives. In mathematics, I like solving word problems and using measurements that could help me create or build something important.
The teachers that have inspired me the most are my middle and high school science teachers and my yearbook teacher. Not only have they inspired me to pursue my goals and make achievements, but they also have taught me how to become a better person and how medical conditions don’t define who I am, and don’t have to consume my life.
I am planning to continue my athletic career and academic career at Gonzaga University in Fall of 2023. I am going to become a Nurse Practitioner because I have loved the medical field ever since I was very little. I have two nurses in my family, and my nurse Stacy who is considered part of my family, that have all inspired me to pursue a nursing career. I have always wanted to help people and save lives.
I have wanted to tell people my story so I can inspire them to be proud of who they are and help them express who they are with confidence. I am going to run cross country, indoor track and field, and outdoor track and field. I am very excited to pursue both of my biggest passions at the same time!
Q: Can you tell us more about your experience with home health and your nurse Stacy?
A: When I first started getting my treatments, I had to get them at the infusion office to make sure I didn’t have any serious side effects and that the medicine was infused correctly.
After the first couple treatments, I was able to start getting my IV infusions at my own house. I didn’t have my nurse, Stacy, when I first started getting them at home, but soon after she started doing my infusions She usually only pokes me once, even with my small veins, which is amazing. I have had her for over five years now, and I know for a fact that I will never switch to a different nurse. She is considered part of my family and I am truly grateful to have her continuous love and support.