My Diagnosis Story: ANCA-Associated Vasculitis

Medically Reviewed by Neha Pathak, MD on February 17, 2026
7 min read

By Yvon Tran, as told to Sarah Amandolare

When I was a senior in high school, I got super sick from the flu. I had a really bad cough. I started coughing up a bit of blood, but I didn't see any issue with it. Lots of high schoolers, if they see a health issue, wouldn't really talk to a doctor about it. And I got over this flu. 

But a few months later, I started feeling extremely fatigued, to the point where I couldn't walk up stairs. I was a pretty active person at the time. I did a lot of sports, I volunteered a lot, and I worked a job, so having fatigue wasn't really a concerning symptom for me. But after another month or two, I started getting really pale, and a lot of people started noticing that. My parents noticed that I was sleeping a lot, which was uncommon for me. 

I called my doctor and requested a blood test. A few days later, I got called out of orchestra class and was told to go to the hospital right away. They saw that I had really bad anemia, to the point where I could've been passing out at any second. I was in the hospital for about a week. They did a lot of diagnostics during that time. 

I was pretty confused. I'd never been to the hospital overnight before. Since I went to a pretty competitive high school, I was pretty stressed about missing a lot of school. It was my senior year, and I had college applications and everything. When I was stuck in the hospital, they found that it was most likely anti-neutrophil cytoplasmic antibody-associated vasculitis (ANCA-associated vasculitis), because they found inflammation in my lung. 

They started my treatment right away. I was put on high prednisone. They put me on cyclophosphamide (cytoxan) — which is a type of chemotherapy usually used for cancer — and a ton of other meds. I'd never been put on any sort of treatment before. Prednisone is a steroid, and it makes you gain a lot of weight. I also lost most of my hair. 

I was pretty sad at the time. It was a traumatic experience for me because I basically looked like a Cabbage Patch doll. I also had a really bad reaction to the Cytoxan, and it caused a bladder hemorrhage, so I wasn't able to walk for a few months. It was like 10-out-of-10 pain for me. Throughout my senior year, I probably missed 50% of school. 

I was put on treatment for about a year, and luckily, I ended up in remission. My doctors gave me the OK to move to Southern California for college. It was pretty nice because I was basically "normal" again. I played volleyball, basketball, softball, and went to the gym. I worked three jobs. Nobody would've figured that I was really sick, literally the year before.

It wasn't until the beginning of my senior year of college that I started flaring up again. A flare for me is having more elevated autoimmune markers in my blood tests and more protein in my urine. They gave me another kidney biopsy, and then I was put on another round of prednisone.

I ended up gaining a lot of weight again. It really messed with my self-esteem. But another thing is, prednisone makes you really emotional when you're on a high dosage. I'm usually not an emotional person, but when I was on prednisone, I cried so easily from anything. I'd get super angry. It makes you tired. But I was like, "I need to keep my health in check versus working on my self-esteem," because it's only a temporary treatment.

After the prednisone treatment, I did go into remission again. But on my kidney biopsy, they found another autoimmune disease called IgA nephropathy, which affects my kidneys. They also diagnosed me with Hashimoto's, a thyroid autoimmune disease, and Sjogren's syndrome, which affects the eyes. Surprisingly, no one else in my family has an autoimmune disease.

After two years, my kidney function started declining. I'd been put on a lot of experimental meds for IgA nephropathy. My doctor wanted another kidney biopsy, but the interventional radiologist refused, because I'd done so many biopsies. It wasn't normal for him to see a 25-year-old do five kidney biopsies. During that time, everyone thought my symptoms were from IgA nephropathy. They didn't expect ANCA vasculitis to come up.

My kidneys started really failing and my doctor didn't know what to do. I switched medical groups, and they did a biopsy and had me admitted immediately, because my kidneys were failing. They found that the ANCA-associated vasculitis came back, and all these experimental meds that I did were for the wrong disease, which kind of caused my kidney failure. If I'd gotten a diagnostic way earlier on, I'm very confident I would not be on dialysis.

At first, I was really sad, because I was put on something called "hemodialysis," so I had a chest catheter. I felt absolutely horrible afterwards. I would throw up. I didn't even have enough energy to shower. But after four months, I started talking to people online and I read that a lot of younger people are more comfortable with peritoneal dialysis. That means I'd get surgery on my stomach and have an abdominal catheter. I'd do this dialysis at home while sleeping. I was scared to do a whole treatment like that at home, but after talking to people who actually did it, I was convinced.

I started peritoneal dialysis in January 2025, so I've gotten pretty used to it. It's been way better than being on hemodialysis. I feel almost 100%, and I feel pretty normal. I'm fatigued all the time, but that just comes with having kidney failure in general. The only caveat is, I do like to travel, but I can't really travel as much. The most I can do are road trips, which I still do often. But I have to carry my machine and all my supplies with me, which is pretty annoying.

I've lost a significant amount of weight since I started dialysis. I still have fatigue and vomiting, but it's definitely not as bad as hemodialysis. I also bruise super easily, so my legs are really bruised. I don't wear shorts, ever. I also can't do any water activities like swimming or going to the beach. And I usually have to wear really loose clothes, because sometimes I get some stomach pain from dialysis. But other than that, I just have to wear a little band for my catheter.

I have a kidney donor getting tested right now. It's been over a year of testing. I'm hoping they get approved, but I can't really bank on it. If that doesn't work out, I'm going to try to get on the transplant list out of state. Places like Arizona or Nevada have a lower waitlist. I have a more common blood type — O positive — so the waitlist in California is over 10 years, which doesn't really work for me. I'm not even 30, and I do want kids. I do want to progress in my career.

I work in tech right now, and that just works well for me, because it's not physically demanding at all. I've always been pretty tech savvy. I'm extremely lucky that my job is fully remote and they're very flexible with my schedule. I go to a lot of doctor's appointments, but I keep up with my work. I do work at night or weekends a lot.

I'm very much a homebody now. Before, I used to play a lot of sports. Now, I try to do more hobbies at home that don't take too much physical activity, like gaming. I started playing violin again. I used to play in school but hadn't played for about 10 years. I play with my dog a lot. I started baking. I've been getting into a lot of bread making and cookie making.

Everything's at a pause for me right now because I'm on dialysis. It's prevented me from progressing in my career and pursuing higher education. I'm just kind of waiting until I get a transplant and my health is in tip-top shape again. I'd have to be a little bit careful after a transplant, though, because I'll have a pretty bad immune system for at least the first year.

After the first year, though, I hope to travel. I'd like to go to Asia — probably Japan, Korea, and Vietnam.