Kathy Olevsky was never afraid of a challenge. Whether it was learning a new martial arts technique or staring down a particularly daunting trail, Kathy's ability to stay calm and resolute allowed her to tackle just about anything head on. Then, in 2008, she started experiencing symptoms of a mysterious illness not even a myriad of doctors, specialists and tests could identify. She remained determined to find answers, but everything changed when her doctor told her she was in kidney failure.
It was only after a nephrologist, who also happened to be a close friend of hers, conducted a kidney biopsy in 2009 that she got the answer she was looking for. Kathy was shocked to learn at 50 years-old that she was diagnosed with microscopic polyangiitis (MPA).
At the time of Kathy's diagnosis, there were few treatment options and little knowledge of her disease. Over time, however, she learned to adapt to the disease and embraced the value of her network of caregivers and community so that she could continue to do the things she loved, even if doing so came with a new set of challenges. Then again, Kathy was never one to back down.
Below, Kathy shares details about her diagnosis, offers advice for those who may be starting their vasculitis care journey and what she's looking forward to during this weekend's International Vasculitis Symposium in Chicago.
Tell us about your journey to diagnosis. How did you discover you had MPA and when did you know it was serious?
Prior to being diagnosed, I was in the best shape of my life. Things took a sudden turn when I started having unusual pains that didn't follow any pattern, which led me to visit my primary care doctor. She sent me to thirteen different specialists to get my lungs and heart thoroughly checked out.
It was during this process that I remember getting a phone call telling me to go straight to the emergency room because I was in kidney failure. I later found out I had 30% kidney function at the time. After having a kidney biopsy, I was diagnosed with a type of vasculitis called microscopic polyangiitis and spent 21 days in the hospital. It was a really difficult few weeks and I was given multiple treatments in an effort to save my kidneys, which thankfully they were able to do.
How important is it to find the right care team and why?
Finding the right care team is a huge part of the diagnosis journey. It's also important to know that not all specialists are up to date on the latest information, so seek second opinions if you're not getting answers. My specialist knew my disease well and was able to help me find the right management plan to treat my specific type of disease.
From speaking with others living with vasculitis over the years, many don't get the same kind of management I received. Many people might not have a vasculitis center near them, or their doctors don't know where to refer them. I'm very happy that I had the contacts that I've had to help me, and nowadays, I do what I can to help others when they don't know where to turn.
How do you prepare for appointments? What resources have you found helpful over the years?
Always have somebody else in an appointment with you. When you're sick, you don't hear everything and even when you do, you likely won't remember all of the information. Having another person in the room can provide the support you need during challenging times.
Also, look for a foundation that supports your disease, so you never feel alone. In my case, it was the Vasculitis Foundation. They've been my biggest resource for accurate and reliable medical information.
You've previously spoken about the importance of staying strong for you and your family members. How do you stay motivated to keep going?
I have to admit, when I'm on certain medications, I don't always feel strong. I can feel emotional, weak and fatigued. That's when I rely on my family and my best friend to remind me of who I am.
MPA can be a very invisible disease. While I continue to make an effort outwardly to get dressed, put makeup on and do my hair, I'm often times struggling. But it's important for me to see the image that I'm used to seeing to remember that I am moving forward and not letting my condition take over.
I want everyone to know that people with vasculitis are not defined by their disease. Everyone should find something to remind them of who they are, who they can be and who they want to be. They're perfectly capable of doing many great things in the world, sometimes they just need help.
What are you looking forward to at the 2023 International Vasculitis Symposium? What would you like to share with the vasculitis community?
I'm eager to see people at the symposium that I can talk to and share my story with to provide hope for those grappling with their diagnosis. I went to my first symposium in 2014 and met someone else that had my exact disease. We've been friends ever since! To this day, we see each other a couple of times a year and sometimes go to our appointments together.
I'm also excited to listen to the medical professionals talk about changes in the vasculitis community and treatments. There's a lot of research going on and that's hugely uplifting for someone with vasculitis.
I've always been a volunteer at heart, and I want to share positivity with people. It can be so difficult during the first couple of years after diagnosis, and after nine years of managing my condition I want people to know that there are great possibilities out there. My message today is to not give up on the things that make your life full and rich. Personally, I'm looking forward to continuing to teach martial arts classes, travel and go on long-distance bike rides with my husband. Every day we are learning more about this disease, and together with your care team navigating this journey is possible.
To learn more about vasculitis visit the Vasculitis Foundation website at www.vasculitisfoundation.org.
