How IgA Nephropathy Changed Me…For Good

There is one constant in my life: IgA Nephropathy.

The one constant: Living with IgA Nephropathy

No matter what I do or where I go, it is always there. I can say that getting diagnosed with IgA Nephropathy was the worst thing that ever happened to me, and well, I would be lying. It wasn’t; there are way worse things that I have gone through. Getting diagnosed with IgA Nephropathy was a wake-up call.

Life before my IgAN diagnosis

Before I was diagnosed, I was working in a high-stress job. I would wake up every day, go to work, work 10 to 12 hours, then come home and try to spend as much time with my son before eventually passing out. My diet was horrible; it primarily consisted of takeout, and on those nights that I did cook at home, it was chicken nuggets and mac and cheese, because why make two meals? Exercise was not an option; I mean, who had the time or the energy for that?

Needless to say, my lifestyle was not the healthiest or the happiest. I was always running from one place to another, with very little time to stop. Just making the appointment that started this new journey was a chore. In fact, I had originally made the appointment for March of 2019, which was rescheduled to April and then to July.

When that July appointment came around, I knew I had to make it happen.

The day I was finally diagnosed with IgAN

When I was finally diagnosed with IgA Nephropathy, something strange happened. I was forced to stop. I spent 5 days in the hospital, and upon release, was prescribed high doses of prednisone. High enough that my doctors decided I was to stay out of work for at least a month as my body adjusted.

I could not remember the last time I was forced to do nothing. I honestly thought I was going to go stir-crazy, but that month gave me the time I needed to accept my new reality.

That month was the beginning of my new life, one I thought would be so different at the time. See, I thought I was entering the worst thing that would ever happen to me; little did I know that, in a way, it might have saved me.

How IgA Nephropathy changed my eating and drinking Habits

IgA Nephropathy forced me to make so many needed changes. First, of course, was my eating habits. Take-out was not an option, not if I wanted to stay off Dialysis. I had to find healthy food options and make real efforts to eat home-cooked meals. Drinking alcohol, well, that needed to stop at least for a while.

As a girl who loves her wine and her bourbon, I thought I would struggle. Honestly, way easier than I thought. In fact, it was easier for me to cut out alcohol than it was cheeseburgers, but I did both. What did it teach? Well, when I got stable, I could have those things; it was just in moderation.

Walking away from my career due to IgAN

The other big change was my work. I loved being an event planner; it was my passion. Unfortunately, it took a lot from me, physically and mentally. I didn’t realize how much until I was diagnosed with IgA Nephropathy.

When I got laid off in March of 2020 due to COVID, I saw my function improve. It was then that I knew I had to stop. I had to walk away from my passion.

Finding a new purpose through IgAN advocacy

Fortunately, having IgA Nephropathy led me to a new passion. Patient advocacy and disease awareness.

Sharing my story with other patients helps me connect; sharing it with industry people and doctors helps our community. A community that has become so important to me. This is my passion; it is what gives me the drive and determination to keep living. It makes me whole again in a way that I did not feel before I was diagnosed. As a result, I was given more time. Time to be a mom, a wife, a daughter, and a friend.

What IgA Nephropathy really taught me

So no, IgA Nephropathy wasn’t the worst thing that ever happened to me. It wasn’t great either; it was just something that happened.

Trust me, living with this disease isn't rainbows and butterflies. It is hard, it is sad, and it can be extremely scary, but for me, there has been some good; I wouldn’t be the advocate I am without it. I wouldn’t know how strong I truly am if I had never been diagnosed.