Written by Linda Lujan.
This year, my confidence and health were greatly challenged as I faced the reality of learning that I developed a serious, potentially life-threatening disease and tested positive for COVID-19 in the same ER visit. Though I did not receive my diagnosis of Minimal Change Disease until June 24, 2020, my journey started many months prior.
That’s where I’ll start my story of “Welcome to 2020.”
After a flight to Texas during the week of Christmas 2019, I noticed my ankles were swollen. I thought it was due to the long flight, and I tried to relieve the swelling by elevating my legs and wearing compression socks during my weeklong stay, which helped relieve the swelling to some degree. Upon my return to Oregon, the swelling eventually resolved.
As 2020 began, I was off to a great start. I was healthy and training for a half-marathon, my nutrition was on point, I was not taking any medication, and I had no underlying health conditions.
Things began to change just a few weeks later.
From mid-January through early March, I started gaining weight for no apparent reason. I gained a pound or so a week and couldn’t figure out why. In late February, I noticed that my legs were swollen. I started paying more attention, and though the swelling wasn’t improving, instead of thinking I had a medical issue, I thought it was related to my exercise routine. At this point, I was cycling 100+ miles every week!
In mid to late March, my weight was still climbing a pound at a time, and the swelling in my legs was still prevalent. I saw my family doctor, who also thought it was related to my exercise and prescribed a diuretic. A week later there was no change, so I returned to the doctor. After seeing my albumin level in my lab results, he asked me to increase my protein intake by 20%. Within a week the swelling in my legs mostly resolved, but then my abdomen started swelling.
On March 30, after a long weekend of considerable discomfort in my stomach from extreme swelling and now severe fatigue, I once again went to see my doctor. He wanted a CT scan of my belly, but because insurance was going to take three to five days to approve it, he sent me to the emergency room.
There, a scan was taken of my abdomen and lungs. The ER doctor indicated that he believed I had Nephrotic Syndrome and had consulted with a nephrologist in Portland who asked that I be transferred to a hospital there.
But there was one problem! The scan of my lungs revealed what was described as glass shards, which the doctor believed was an indicator I was positive for COVID-19. The doctor in Portland began working on getting me into a hospital — but special conditions were needed for my admission because he believed I was positive for COVID-19.
I was transported by ambulance to Meridian Park Hospital in Portland. Upon arrival, I was taken straight to a room, bypassing what I assume would be normal procedure for a transfer. It felt a bit chaotic and I was definitely scared. My husband wasn’t allowed to be with me and would not be allowed to come see me.
I was in a lot of pain, and I was processing a lot of information: what it meant to have COVID, and what in the heck Nephrotic Syndrome even was. It was a surreal and terrifying experience.
After getting settled into a room, I was put on a diuretic through IV. By the next day, I was feeling much better with respect to the pressure in my abdomen. That morning, the doctor confirmed my Nephrotic Syndrome diagnosis.
He said I needed a kidney biopsy to determine what specific kidney disease I had, and he also wanted an ultrasound; however, the hospital declined both orders due to coronavirus restrictions. A 24-hour urine catch was ordered, which revealed a high level of protein. The COVID-19 test came back that day as well — with a positive result.
I was in the hospital for four days in a particular area that was set aside for COVID patients. At that time, there were eight patients suspected of having the virus, but I was the only confirmed positive case. What should have been a routine hospital stay (if there is such a thing) was complicated by my COVID diagnosis. I later learned from my doctor that, because he believed I had contracted COVID before it was confirmed, he fought for extreme measures for my care in addition to the coronavirus protocol the hospital already had in place.
The safety protocols he asked to be implemented for my care included only one hospital doctor assigned to me, one nurse per shift allowed in my room, and meals delivered only as far as the door. Everything that came in my room was disposable, and nothing left my room. The extreme end of this caution was that during the 24-hour urine catch, I was asked to measure the urine, transfer it to a larger bag on ice, and document the measurements. I was way too sick to be managing such a task.
Upon discharge from the hospital, my nephrologist informed me that I would not be able to get the biopsy until I tested negative for COVID, and, once he knew my diagnosis, treatment would not begin until I had a second consecutive negative test. Unfortunately, over the next seven weeks, I continued to test positive.
The time period between my discharge from the hospital with a general diagnosis of Nephrotic Syndrome and starting treatment for it was about 12 weeks. It was a long 12 weeks!
Emotionally, I was scared to death because I didn’t know what was wrong with me. The only thing I could do during that time was to research Nephrotic Syndrome — because that’s all I knew was wrong with me.
It was very scary to not know my specific kidney disease diagnosis. Every positive COVID test added another level of disappointment, as it further delayed a diagnosis and treatment.
This time period was stressful and emotionally challenging. I faced the reality that I had a kidney disease, but that I didn’t yet know which disease, how much damage (if any) my kidneys had suffered, and what long-term effects could result. I was concerned things would get worse as I continued to wait for a negative COVID-19 test.
I finally tested negative and was able to get my biopsy in early June. On June 24, I received a diagnosis of Minimal Change Disease and started treatment of 60 mg of prednisone. My first lab results four weeks from that date revealed I was in remission, so I started to quickly taper off the prednisone.
After I was released from the hospital, the nurse at the kidney center kept telling me that my doctor was fascinated by my case. I asked the PA about this, and he told me the doctor believed I had contracted COVID in late fall 2019 and that it had started attacking my kidneys when the first swelling presented in late December — causing my Minimal Change Disease.
Furthermore, the doctor believed I was one of the first cases of such a diagnosis to be caused by COVID-19, and therefore a case for medical journals. At my diagnosis appointment, he told me he’d discussed my case with peers worldwide, and they were all of the belief that I was the first case in the U.S. to have had the coronavirus lead to Nephrotic Syndrome without having any underlying conditions. At the time of the kidney biopsy, my doctor asked the pathologist for an analysis for COVID to give insight to this theory, but the pathologist could not confirm it.
My doctor told me that if he was right about COVID-19 causing my MCD, I would be in remission quickly, and that I would most likely have little chance of relapse. He was right. I’ve been in remission since the four-week mark, and I’m praying for no relapse.
During the same appointment, he told me he was participating in a COVID/kidney case study and that he was presenting my case for it; that case study has since been published.
Throughout this whirlwind year, NephCure has been amazing. When I received the initial diagnosis, I researched Nephrotic Syndrome a million and one ways. I kept changing my search words and finally came across NephCure’s Facebook group.
I posted that I had a Nephrotic Syndrome diagnosis but had to wait on a biopsy because of COVID-19; a patient advocate for NephCure replied to my post and we talked on the phone a few days later. She gave me so much information and put me in contact with Kelly Helm, NephCure’s assistant director of patient advocacy.
I then learned about the bi-monthly peer-to-peer video calls and started participating in them — I learned so much from the other participants on those calls, as well as from Nurse Kristen! One participant reached out to me via private message and gave me so much helpful information.
Kelly kept in contact with me, and was also very supportive and responsive to my questions and/or concerns. I truly appreciated the support group and Facebook page, and the opportunity NephCure gave me to hear from people who shared similar challenges.
Today, I am healthy, medicine-free, and have been back to my regular exercise routine since early September! I pray every day I stay in remission.