May has without a doubt been the most exciting and rewarding month of 2023 so far! I have good news on all fronts. Firstly and most importantly, I’m so happy to report that my labs are stable and I am considered “non-nephrotic,” meaning that my kidneys are only spilling a negligible amount of protein. In other words, my IgA nephropathy is in remission. Of course, my kidneys should not be spilling any protein at all, so I will continue to try to get the proteinuria down to zero. I attribute this win partially to Lisinopril, as I have bumped up my dosage 10mg daily, and I’m so thankful that this simple and inexpensive treatment has continued to serve me well. I also partially attribute this success to myself, because I’m working hard and staying positive, and that has to count for something. The best part is that my nephrologist is so optimistic about my prognosis that he only wants to see me twice a year now. I will continue to get lab work done every 3 months for the foreseeable future, but my kidneys can take a seat in the back. As long as nothing changes, I’m good!

Earlier this month, I had the amazing opportunity to go to the Texas Capitol in Austin and receive recognition along with others from the IgAN Foundation, for IgA Nephropathy Awareness Day. The official day was celebrated on May 14th, but since it was a Sunday we were recognized the following day instead. It was truly so humbling and strengthened my conviction in raising awareness for this cause. I have shared video of the senate session on my TikTok, which you can watch below.

Speaking of TikTok, a couple days ago I made a goofy video using cat memes to tell the story of my diagnosis and it has received over a million views. I’m glad to be able to spread awareness about IgAN on social media, no matter the format. But I digress.

After my trip to Austin, I flew to New Jersey to share my story with the executive team of a pharmaceutical company that’s currently testing what may be one of the next approved treatments for IgAN. I got very emotional and tripped up a few times, left out small parts of what I wanted to say, and added parts I wasn’t expecting to say, but overall I was able to share my raw and real experience as a patient. It hasn’t been easy, especially thinking about the ways I have been let down by medical professionals, and the small, unexpected ways my life has changed. I hope that my story gave some helpful perspective on what a patient goes through when dealing with a rare disease. Fun fact, my intended career path when I enrolled at the University of Houston was pharmaceutical research. The pharma industry will always have a place in my heart even if I didn’t follow down that road, so visiting the campus of one of the big names was definitely a cool experience.

Since returning home, I’ve been keeping myself busy with work and volunteering. I’ll be planning a local kidney patient meetup with NephCure, so hopefully that will happen sometime in July or August. I have a couple other partnerships brewing that I’m excited to start sharing about soon, and I’m also working with a few people who are much smarter and better connected than me to try to get a few things changed on a larger scale. I don’t like to count my chickens before they hatch, so I will share more in the following months.

June is looking pretty uneventful so far, which is great, because I’ll be able to relax a bit and focus on myself. I hope I’ll be able to spend some time at the beach soaking up the sunshine and living my best life. Maybe I’ll even have time to write a few more blog posts! 😉