Faalelei Niko
Hello my name is Faalelei Niko, but most people call me Lei for short. I am 30 years old and a mother to a wonderful 12 year old son Malu.
My family has been in the gorge community for over 30 years. You might already know me from growing up in The Dalles or from seeing me working at your local pharmacy, but my favorite is when I am recognized as Malu’s mom.
In early 2012, I had just gotten over the flu, but still couldn’t shake the shortness of breath, and the deep pain I felt in my lungs and chest. I went to the ER to see if maybe there was something more going on. At the emergency visit, they had taken an X-ray and saw that I had pleural and pericardial effusion, which is the buildup of fluid between your lungs and heart protective sacs.
I followed up with my family doctor, but weeks went by and my doctor still was unable to determine why I wasn’t getting better. My grandma advised me I should ask to see a specialist. So in March of 2012 I met with Dr. Sager, a rheumatologist and was officially diagnosed with Lupus SLE. (Lupus SLE : an autoimmune disease in which the immune system attacks itself. )
At the time I was scared, not knowing what this meant for myself and my small child. Luckily the amazing providers at Providence Hood River were able to walk with me every step of the way until I felt comfortable managing my lupus by myself. I spent 5 years with no symptoms!
I was able to enjoy life and have it go back to normal, until the summer of 2017. After returning from a family vacation and found myself in the same condition as 2012. Only this time something was different. My heart felt like it was being overworked while doing simple things like sitting or laying down. I went to get checked out, and they soon set up an echocardiogram (an ultra sound of your heart). The next morning I got a call from my specialist. He asked me to go to the ER immediately because they had found an irregularity on the ultrasound.
As soon as I got to the ER, they informed me that I was going to be transported to the cardiac trauma center in Portland in order to perform a pericardial window, which is where they remove a piece of the protective sac from around the heart in order to continuously drain the fluid buildup. As scary as that was, I remember the feeling of relief when I woke up to the pressure and pain being gone. I was in the hospital for about a week and shortly thereafter started a road to recovery to get my lupus back into remission.
A few years go by and it’s 2020 and the beginning of Covid. My routine kidney lab work started coming back irregular and my doctor noticed my kidneys weren’t filtering normally. My doctor referred me to a nephrologists; a kidney specialist. They set up a kidney biopsy to see if there were any signs of lupus. They found traces of lupus, but since they caught it early enough, we had a chance to stop it early.
Unfortunately in 2021, the complications of my kidney became worse. We tried different treatments to help stop the spread of the lupus. On October 20, 2021 I received another biopsy to see if my lupus had spread in my kidney. Nine days later, while waiting for the results, I woke up in the middle of the night with excruciating pain. I called my sister and we rushed to MCMC. The care team took a CT scan and discovered I was bleeding internally. They rushed me to Portland trauma center once again for an emergency surgery to stop the bleeding. I woke up that night and that’s when I was informed that the doctor who had performed my second biopsy had accidentally cut an artery in my kidney. I was very lucky to be alive.
While on the road to recovery, I was doing monthly check-ins between my lupus doctor and my kidney doctor. Unfortunately result came in showing the lupus had once again spread in my kidney. Luckily I wasn’t suffering the same symptoms as before and my doctor decided we were going to do a more aggressive approach and seek chemotherapy treatment to stop the lupus.
At the start of 2022 I felt like things were looking up. My kidney functions were looking better little by little. Then at the end of April things took a turn for the worse. I took my routine labs and at 9pm that night I got a phone call that I needed to go back to the ER. The fear came over me again as they told me that my kidneys were failing. The official diagnosis was end stage renal failure.
The doctor explained what the next few weeks were going to look like and the process began. On June 1st I went in to have surgery and have a peritoneal catheter put in, and a fistula. They informed me I was going to have to start dialysis as soon as possible.
Fast forward to August 2022 as Pig Bowl board members learn of Lei’s condition through a citizen’s nomination. As we interview Lei, she humbly explains that the Dialysis Center only has so many beds and so many appointments. Lei wanted to save those beds for older patients who needed help with dialysis so she went to a week of training to learn how to perform her own dialysis at home. Lei is a full time mother and works full time at the Fred Meyer pharmacy and yes, she has to do dialysis every single day.
The truth is, Lei needs a live kidney donor to survive and she is a good candidate for a kidney transplant. Lei needs our help. If you or anyone you know has a an O+ blood type and is interested in donating a kidney to Lei please go to https://legacy.donorscreen.org/ and fill out the questionnaire. You will need her full name Faalelei Niko and birthday: 11-19-1991. If you have any questions the transplant team is happy to answer them. You can contact the transplant center at 503-413-6555.
