“We know when mommy is sick. We love playing with her but sometimes she can’t play. She’ll feel icky and we just need to let her rest. We just want her to feel better all the time.”
Cadence Seeley – age five
Then, I’ll be posting progress pics so you guys can help tell me when my face finally looks normal again! 🤞🏼😂😩Cuz it’s hard to tell when you’re looking in the mirror everyday.
As a 30 year old single mother of two working in a very fast paced environment, Jade Seeley is used to persevering through even the hardest of times. She doesn’t have much time to rest. Growing up, Jade was generally pretty healthy, but would frequently get really bad urinary tract infections.
“Urinary Tract Infections, more commonly known as UTI’s, are an infection that can affect any part of your urinary system – your kidneys, ureters, bladder and urethra. Symptoms include a strong persistent urge to pee, not being able to pee much, pelvic pain,a burning sensation when you’re able to pee, as well as a strong odor. Generally UTI’s are pretty harmless and can be treated very easily. However, left untreated UTI’s have the capability to compromise your kidneys as well as cause urosepsis. Urosepsis happens when the bacteria that causes the UTI leaks into your bloodstream. This has the potential to be life threatening and needs immediate medical attention. If you believe you have a UTI, get it taken care of by a professional before it can get any worse.”
Dr. Walsh an online GP
After giving birth to her first child Ariana in 2012, Jade began to notice that something was wrong. At 22 years old there shouldn’t have been any complications. However, soon after she gave birth Jade was hospitalized with an almost life threatening UTI.
“It was terrifying. I was used to getting UTI’s so I didn’t give it a second thought when I started to get the classic symptoms. I just assumed it was a regular UTI and drank some pure cranberry juice and hoped for the best. I had no idea that UTI’s could cause other serious health complications. The doctors believe that this was the point where my kidneys’ became compromised, however I didn’t really see much change until after my second pregnancy.”
Jade Seeley
During her second trimester with Cadence, Jade was told that there was something wrong with her bladder and was sent to a urologist. There they told her that something was leaking into her urine. That was the tipping point in which Jade’s health began to deteriorate.
“The next year was extremely hard. I was a recently single mother of two. I’d be going to work before the kids woke up and get back after they were asleep every single day. I was in survival mode so I didn’t even recognize my own health deteriorating.”
Jade Seeley
Things really didn’t start to sink in until Jade was relocated to Scotland. As a district manager for Lidl, she was spending a lot of time traveling and began to notice that she would swell every time she’d travel. It progressively got worse until even driving 30 minutes down the road would cause her ankles and legs to swell.
“It was getting ridiculous. My job was very intensive and I was always on the go. I knew something wasn’t right with my body, but I wanted to keep pushing through. Eventually I couldn’t do it anymore and booked an appointment with the NHS. They told me that my kidneys were leaking proteins but they weren’t sure why.”
Jade Seeley
A couple months after her first appointment Jade was transferred back to the US and moved to Charlotte, South Carolina. Here she was prompted to go see a neurologist who believed that Jade had Lupus. Lupus is a serious long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks the body’s normal, healthy tissue.
Shortly after this diagnosis she was transferred again to Augusta, Georgia. As Jade hadn’t been in Charlotte long they had yet to start her on any treatments, but when she moved to Augusta they wanted to start immediately.
“It was kind of funny. They had just sent in the prescriptions and I went to go get them when I got a call from the doctor. He told me that they’d gotten the diagnosis wrong and the medicine would have adverse effects. I was both relieved and worried. If it wasn’t Lupus, what could it be?”
Jade Seeley
Jade was sent back to the nephrologist immediately and they told her that she had a serious autoimmune disease that was attacking her kidneys. However it took the doctors another year to give her a proper diagnosis, atypical Membranous Nephropathy Syndrome.
Atypical Membranous Nephropathy syndrome is a serious autoimmune disease that attacks the kidneys. It affects the kidneys filters, can cause proteins to leak into the urine, and causes swelling to occur.
The doctors prescribed Jade with really high doses of steroids as well as some other strong medications to help combat this mysterious autoimmune disease. While they helped stave off some of the symptoms, they didn’t help repair the proteins that were leaking out of her kidneys. Jade also had to change her whole lifestyle. She could no longer add salt to her food when she was cooking. She limited processed and frozen foods.
“I had trouble coming to terms with the fact that I had to change my lifestyle. Outside of my children, I measure my success on how well I’m doing at work. There was a point when I would be working 80 hour weeks on top of being sick and a single mother of two. I thought I could do it all on my own, but you have to know when to ask for help. You can’t feel guilty for asking for help, or feeling the way that you do. It’s out of your control.”
Jade Seeley
In 2018 the doctors decided to take an unorthodox approach and told Jade that they would be using Chemotherapy to weaken her body’s defenses so that they would no longer attack her kidneys, giving them time to heal.
As her body was already worn down from working crazy hours, the chemotherapy completely wiped Jade out. She was hardly able to leave bed the following five days, and after that she was still quite run down and needed to take it easy.
“My boss really didn’t understand what I was going through. He told me that my situation wasn’t sustainable and I’d need another solution… There was no other solution. I needed the treatments or my life would be at risk.”
Jade Seeley
After her body recovered from the first round of Chemo, Jade was feeling better than she had in years. Unfortunately the treatment was only effective for about a year.
“When I started to feel bad again they told me I was going to need another four Chemo treatments. It’s extremely frustrating. At first they told me that after one treatment I would be better. Then they told me that if the next four treatments didn’t stick, I’d need one treatment a year for the rest of my life. To make matters worse, my insurance company wouldn’t cover the cost of the chemo for kidney failure as it is an unorthodox treatment. However, there was proof that the treatment had been effective from the first round of treatment. Without the insurance company accepting my claim, each treatment would be $20,000 out of pocket. All four would cost me $80,000, as a single parent who needs to keep a roof over our head and food on the table this would be impossible. If I had to choose between the treatments or providing for my girls, I would pick my babies every single time.”
Jade Seeley
As the insurance company would not budge, the doctors recommended that she apply for a grant through the pharmaceutical company that created the treatment. Occasionally pharmaceutical companies will create programs for people who cannot afford the treatment, however Jade never heard back from them. Knowing Jade’s predicament, the financial department at the Georgia Cancer Center at Augusta University funded all of her treatment as a scholarship grant.
Jade started her treatment again in August of 2019 and had to use FMLA to take four weeks off from work to recover.
“I felt so guilty because I couldn’t take care of my babies. None of my friends understood. They didn’t consider how I was feeling. ‘You look fine. You’re not even that swollen.’ You can’t measure exhaustion but I can tell you mine is abnormal and can’t be compared to how you feel after a hard day’s work. My mom had to come live with me as I could barely make it out of bed most days. Sometimes I would feel better and try but if I did then I wouldn’t be able to move for the next week”
Jade Seeley
After completing her four rounds of treatment she returned to work in September feeling a bit better but her kidneys were still leaking proteins. The doctors told her that she’d have to follow the law of thirds. One third of the people who go through treatment are cured and never relapse. One third will feel better for a short time but need more treatments. And the last third will not be cured and will have to go on dialysis for the rest of their lives.
“It’s hard knowing that I may never be cured of this illness but I have a great support network of doctors, family, and friends. The best advice I can give is to persevere and don’t let any of your diagnosis scare you. Don’t put off treatment. Listen to your doctors. And most importantly, take care of yourself – mentally and physically. You can and will make it through it.”
Jade Seeley
If you or someone you love are looking for a support group or more information on Kidney Diseases and Kidney failure please visit the following resources.
Under My Skin 