The story of my kidney journey really starts in July 2011, I just didn’t know it at the time. I was 18, freshly graduated from high school, and was busy hanging out with friends and working my summer job as a lifeguard at the local community center. One day, as I was biking home after my shift at the pool, I was hit by a large truck while crossing a busy intersection. I was rushed to the hospital in an ambulance and underwent hours of testing. Thankfully, I wasn’t really hurt, no broken bones, no concussion, just a few bruises and scrapes. However, I had some lab work done at the hospital which raised a few red flags. I had blood and protein (30mg/dL) in my urine, and the ER doctors ordered a CT scan and sonogram to check for any internal bleeding. The scans came back normal, and eventually I was sent home and asked to follow up with my PCP about the results of my urinalysis.

Being a healthy teen, I felt invincible, and as the soreness from the accident wore off, so did any concern about “abnormal” lab work. I didn’t bother seeing the doctor for anything other than a routine check-up for several years, and of course none of those visits included urinalysis. In retrospect, it’s hard to believe that the evidence was staring me in the face and it got missed for so long. It’s obvious to me now that I could’ve gotten diagnosed much earlier if I had followed up with my doctor, but there’s no point in blaming my healthy younger self.

For years, everything was fine and I always felt healthy and normal. Sometime around 2016 or 2017, I started having joint pain and dizziness. My labs always came back within range, so I thought my symptoms were happening because I was on my feet too much, and I didn’t press the issue. The dizziness kept getting worse over time, so eventually I quit my job as a hairstylist when I got the opportunity to work a less physical office job. I went to an ENT, got an MRI, got prescribed anti-vertigo medicine, but nothing seemed to help the dizziness, and none of the doctors I saw could provide an explanation for it. Eventually I started feeling a lot of fatigue, and I had trouble concentrating at work, but my blood work was still normal.

One day in March 2022, I woke up with a dull ache in my lower back. I hadn’t done anything outside of my usual routine, so I thought I had slept wrong and tried to stretch a bit to help relieve the pain. For weeks, the pain would come and go. I was so busy with work that I kept thinking, “I must be stressed, if it still hurts next week I’ll go to the doctor.” I continued to brush it off until one day, to my horror, I saw that my urine had a brown hue, unlike anything I had ever seen before. A couple of days later, I went to the clinic and explained my recent symptoms. My PCP ordered blood work and urinalysis, and it came back that once again, all these years later, I had blood and protein in my urine. My GFR was still in the normal range at 70, but my creatinine was slightly elevated at 1.10. I was referred to a nephrologist but didn’t have my first appointment with him until June. A few days later, my urine returned to its normal color, though the flank pain persisted. In the meantime, my PCP prescribed an antibiotic to rule out a UTI. I finished the antibiotics and showed no improvement.

Over the next few weeks until the appointment with my first nephrologist, I was beyond stressed. I just wanted answers, and being patient was difficult as I was still actively experiencing painful symptoms. By the time I finally saw the nephrologist, I was ready to hit the ground running and dive straight into finding the diagnosis and begin treatment. Instead, he insisted that I must have chronic UTIs, and prescribed a second round of antibiotics despite the fact that I had no UTI symptoms and the first round of antibiotics did not improve my condition at all. Against my better judgment, I followed his advice and took the medicine. Again, no improvement. He ordered more labs, and at my follow-up visit he didn’t give me any updates but did prescribe a third round of antibiotics. This time I was a lot more hesitant, but he convinced me it was part of the process, so I took them. I went to a urologist that same week who collected another urine sample and told me unequivocally that I did not have a UTI or any evidence of a recent UTI. A few days later I checked my lab results online and learned that my GFR had dropped from 70 to 34, and my creatinine had crept up from 1.10 to 1.98. The nephrologist had seen me since getting those results back, and hadn’t mentioned the change to me. I was beyond upset. To say I’m not a fan of the first nephrologist I saw is a huge understatement.

At this point, it was late July and I felt like so much time had been wasted listening to a doctor who just stubbornly wanted his first hunch to be correct. Furiously, I began searching for a different nephrologist. The first available appointment with my new nephrologist wasn’t until August 18th, and by then the first nephrologist already wanted to move forward with a biopsy. I saw the first nephrologist on August 15th and he ordered the biopsy, then I saw the second nephrologist on the 18th to confirm that a biopsy was the best next step. I scheduled my biopsy for August 26th (you can read all about it here) and thankfully the entire process went smoothly.

The first nephrologist called me with my biopsy results on September 7th. I had suspected IgAN for a couple of months already, based on the research I’d done and my symptoms, and the phone call confirmed it. I felt relieved after getting my results back, like all the hard work was finally behind me. I know, of course, that the road ahead won’t be easy, but at least now I have an idea of what to expect. The doctor suggested a high dose of prednisone, which would taper down over the following months. I already didn’t trust him much, so I decided to ask my PCP and the new nephrologist for their opinions before making a final decision. My PCP spoke with several of her colleagues and determined the best course of action would be to start with a small dose of an ACE inhibitor. I spoke with my new nephrologist a few days later and he agreed that an ACE inhibitor would be a better first step than a steroid. My PCP wrote the prescription, and I haven’t spoken to the first nephrologist since he called me with my biopsy results.

I had normal blood pressure before, so when I started my 5mg dose of Lisinopril, I was very tired and out of breath for a couple of weeks. Even something as simple as walking across the house or taking a shower would completely wipe me out. I had to get used to moving slowly and carefully, and I couldn’t stand up too fast or my vision would dim. I have to stay hydrated or else my blood pressure can drop pretty dramatically. Thankfully, the Lisinopril seems to be doing its job. The point of taking it was to reduce the protein spilling in my urine, and since starting it I’ve gone from 3+ protein to 1+. My dose was recently increased from 5mg to 7.5mg to try to further reduce the protein to “trace” or “negative,” but I haven’t done labs again since increasing my dosage, so time will tell.

I’m hoping that my next lab results will show the improvement my nephrologist wants to see, but for now I’m content with the progress that has already been made. My GFR has increased slightly from 34 to 39, and my creatinine went down from 1.98 to 1.78. My only complaint about my treatment is that my blood pressure is low, but I’d much prefer that than to be on steroids.

Currently, my worst symptoms are joint pain and brain fog. I feel okay most of the time, I’ve just stopped denying myself naps when I need them. If I’m very active one day I’ll feel it in my joints for the next few days. I get random cramps and muscle aches, especially in my legs, and more recently I’ve started having nerve pain, although it’s not as frequent as the other symptoms. I’m scheduled to see a neurologist in March, so hopefully they can help me get to the bottom of the nerve pain.

I take probiotics and fish oil, as well as iron, although I’m very anemic and the supplements have barely budged my iron levels. My PCP has recommended iron infusions, and I’m so looking forward to them. I’m just waiting for insurance approval and then I’ll be scheduling my infusion. For pain, I try to push through it if I can. I take Tylenol for the rare headache, but I have started to use CBD cream, tinctures, and edibles for the joint pain and muscle aches. The only downside to CBD is that it can lower my blood pressure even more, so I have to be careful, although I haven’t had any issues yet. It helps immensely when I’m having trouble sleeping due to sore legs.

My dietary changes have been pretty minimal, since I already didn’t eat much beef or dairy prior to diagnosis. My nephrologist has asked me not to cut down my sodium intake too much, because of the low blood pressure. I’m mainly just avoiding phosphorous and potassium by reading nutrition labels and being conscious of what I’m eating. It hasn’t been a very difficult adjustment, thankfully, although there is a lot of confusing and conflicting information for kidney patient diets out there. I think the hardest thing to avoid is tomatoes, they’re in everything! I don’t deny myself anything, I try not to be overly strict, but I am very aware at every meal and I try to balance and keep everything in moderation.

I’ve had some major adjustments in my life, and a lot of smaller ones. I think overall, this diagnosis has been a huge blessing. Knowing that there’s a problem is the first step in fixing it, and I feel extremely lucky that this was caught at a stage where something can still be done about it. I’m thankful that I had time to think and make informed decisions, I’m thankful for my new nephrologist and for everything I’ve learned and the people I’ve met.

Even though I’ve come so far and I’ve been on this journey for almost a year now, in some ways it has just started. This disease doesn’t have a cure yet, so this is going to be a lifelong journey. I have a long road ahead, and there’s no way to predict my outcome. I will do everything I can to stay healthy and positive, and I hope I can help others along the way.