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"I'm surprised and happy you survived your honeymoon”: This Woman’s Long Battle with Lupus and How Her Husband Became Her Kidney Donor

Jessica Clayton was told she needed to begin kidney dialysis urgently and secure a kidney donor if she wanted to live. The culprit? Lupus. The disease had affected her brain, her joints and her kidneys too – leaving her in a dire situation. In a moving turn of events, it was her husband who donated his kidney – here’s how it all happened. 

The 34-year-old has defied the odds of her condition, from having her twin girls to fighting through kidney failure. Let’s wind back to when it all started – Jessica reveals her first symptoms of lupus cropped up in her teen years.

“My first symptom was rheumatoid arthritis,I struggled on a daily basis at the age of 19,getting up was a struggle as my whole body would stiffen up,the joints in my fingers would be swollen,” she says. “I struggled to get dressed on my own.”

Lupus is an autoimmune disease involving inflammation in the body, which can affect the whole body. For some, symptoms may come on as flare-ups, leaving many to overlook the possibility of lupus – including medical professionals, with research finding over 60% of lupus patients were initially misdiagnosed. It also shows that people had an average wait-time of 6 years to get a proper diagnosis.

“The main thing about lupus is that it can affect any part of your body,  inside or out,  at any time.”

While the symptoms are widely varied, there are a number of common signs like fatigue which may affect up to 90% of people with the condition. The trademark butterfly rash is another key sign of the condition, and it’s a rash that spreads over the cheeks and the nose, and – as the name suggests – it’s shaped like a butterfly’s wings. Almost half of all lupus patients report this symptom. But there are also other skin afflictions associated with lupus, from discolouration and lesions to other types of rashes. Many lupus sufferers, like Jessica, experience arthritis with stiff, aching joints.

“I noticed my hands were swollen and struggled to do anything from the age of 19, at first the doctor thought I needed surgery in my hand and the hand surgeon took one look and sent me to a rheumatoid specialist,” Jessica says. “He did some tests and a week later I found out I had Lupus. At this stage I had no idea what this was, I had never heard of it or even knew how serious it could be.

“The doctors told me I would have to start taking prednisone to reduce the inflammation but wouldn't be on it for long,15 years later I am still on it as it is the main drug that helps prevent the inflammation from coming back.”

What followed was a series of debilitating symptoms throughout Jessica’s body, from her bones to her brain.

“The lupus effected part of my brain,where it made me have something they called serpent movement,where my arm would just move involuntarily,” she says. “Then the year after I had the lupus affect my bone marrow,I had a bone marrow biopsy to find out I was not producing enough white blood cells and my platelets were low.I then had my intestines affected,flare-ups of the rheumatoid over the years before it affected the kidney.

“To be honest there was much more I went through with my lupus,it is a lot to put down in words.”

There’s currently no cure for lupus, with many sufferers finding themselves battling the condition throughout their lives, with varying areas of their body affected by the autoimmune condition. Organs are commonly affected, with a condition known as nephritis often accompanying lupus – this is when the kidneys become inflamed, preventing them from doing their job of filtering out waste products and toxins in our blood. Swollen legs and feet, increased urination, dark-coloured or bloody urine and high blood pressure are all signs of nephritis, but due to the wide range of symptoms and varying severity, many don’t get diagnosed with nephritis until they’ve experienced significant kidney damage and even kidney failure. Jessica herself experienced kidney failure as a result of her condition – and the doctors were expecting the worst.

“My husband and I knew I needed a transplant someday. We got married in 2016, leading up to the wedding and during the honeymoon, I lost a significant amount of weight, I did not realise by this time my kidneys were only functioning at 5%,” Jessica says. "When we came back from our honeymoon, my kidney specialist said, in his words, ‘I'm surprised and happy you survived your honeymoon, I didn't want to tell you before your honeymoon, but you need to go on dialysis asap and find a live donor.’”

After the initial shock, Jessica says she jumped into treatment right away and her husband underwent testing to find out if he was a donor match for a kidney transplant. 

After 7 months on dialysis,I was starting to deteriorate even more,the dialysis just wasn't enough to keep the kidney going,” The mum of twins shares. “Finally, we got the good news that my husband was a match and we were booked in for surgery on 25th of August 2017.”

After suffering through these life-threatening symptoms of lupus and a successful kidney transplant, Jessica and her husband were finally able to focus on having a child. But getting there was a difficult and painful journey.

“In 2018 I found out I fell pregnant, at this point it was not planned and I was still on the medication cellcept, which can cause abnormalities in unborn children, we had a miscarriage just before we reached the 1st trimester mark,” she says, “From there we decided to wait, at the beginning of 2020 we discussed a plan with my kidney specialist before trying again.”

It was two years later that Jessica and her husband finally received some good news.

“April 2020 I found out I was pregnant, this was truly a miracle, at the first trimester scan we found out we were having twins, an even bigger miracle,” Jessica says. “I was monitored carefully by great team of doctors who care for high-risk pregnancy women, I was lucky and blessed that my blood pressure stayed normal throughout and the girls were growing as normal, the kidney and kidney function was stable.

“My twins were born, weighing only 800 grams each and was looked after in hospital for almost 3 months.”

Jessica’s advice to any fellow lupus patients struggling with the disease is to seek out a supportive community.

“Find a group of people who will support you through it all and remember you have done nothing wrong to have been diagnosed with lupus,it has always been part of your life,it is just as you get older, the flare ups happen,” she says. “Do not be afraid to ask for help and keep a healthy and well-balanced diet.”

While not a cure, eating well, maintaining gut health and staying physically active are three important steps to reduce the severity of the inflammation and to prevent any further health issues. One such step is to reduce or cut out added sugar intake – check out our easy and fun 8-Week Program if you need a little help with a sugar habit – along with keeping the trans fats and preservatives to a minimum. Prioritising whole foods like fruits, veggies, legumes, whole grains and fermented foods over ultra-processed snacks and fast food is a simple way to achieve a balanced diet.

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