My Lupus and Me…

Welcome to my new blog Livin’ La Vida Lupus! I’m Thea, 27 years old and was on the six-month trip of a lifetime with my fiancé Henry when life changed. It took two months of extensive tests, being rushed into hospital, and my organs to start failing to eventually be diagnosed with Lupus. I don’t know much about Lupus yet but join me as I get to grips with this Wolf disease and learn how it’s going to change my life. Let’s also raise awareness of the early signs and symptoms so it’s spotted earlier!

So what happened?

Henry and I were on the trip of a lifetime – a six-month pre-wedding honeymoon that had taken years of saving for. We started in Nepal and travelled through Indonesia and New Zealand before heading to South America. It was in Patagonia that I found a lump in the breast tissue under my armpit, with Santiago de Chile being the nearest place for a hospital. I contacted my insurance company to book an appointment at the breast clinic and when we arrived in the city we visited the hospital.

I was seen by a breast consultant who said that the lump felt like a small ‘breast mouse’, very common for women in their twenties and often go away by themselves. The odd thing was that I had one in the exact same place on the other side so she wanted to do an ultrasound scan. As Henry and I were due to fly to Bolivia the following day, the doctor would WhatsApp me the results of the scan in a couple of weeks time. She envisioned everything to be fine and that we should continue our travels of South America without any problems.

I had the scan that afternoon, and it was then that everything changed. The radiographer could see that the lump in my breast was a lymphnode rather than a breast mouse, and it wasn’t the only one. I had severely inflamed lymphnodes under both armpits and in my neck and groin. She told me it was serious and rushed me back to the international patients clinic to wait for a doctor. The doctor came down to the clinic and told me my scan didn’t look good. She said to cancel the flight to Bolivia and return to the hospital tomorrow.

The next day Henry and I, along with our amazing GP friend, returned to the hospital to discuss the scan results. The breast consultant had referred my case to a haematological oncologist who agreed that the scan showed a number of masses with increased blood supply to the area. We were told I have lymphoma.

All I could do was stare out of the window looking at the Santiago skyline as our world came crashing down. Henry made all the arrangements with the insurance company to travel home and within a couple of days we were back in the UK.

The road to true diagnosis never did run smooth…

Although Henry and I live in Hampshire, we decided to come back to rural Cambridge where both sets of parents live. I registered with the local GP and was seen by 9am on Monday morning. By lunch time I had already had a full set of blood tests and a chest x-ray. The GP made a fast-track cancer referral to Addenbrooke’s hospital, and although speedy, it still takes two weeks to be seen. I saw an oncologist, had further blood tests and was booked in for another scan and a biopsy. This took another three weeks. When I saw the oncologist again, another week later, I was given the very happy news that my lymphnodes were reactive, rather than cancer. This means they were reacting to something happening in my body, i.e. fighting something. The question, what?

In the meantime my joint pain had escalated to the point where some days I simply couldn’t walk, so the oncologist referred me to a rheumatologist. This would take another four weeks, and as events turned out I would never make it to that appointment.

Lupus

As well as the agonizing joint pain, I had started to feel increasingly unwell to the point where doing any normal activity was a struggle. Even getting across the room to the toilet would involve fainting and being sick.

One night the pain was so bad I could not sleep nor move at all. I had to be propped up surrounded with cushions and all my joints felt as though they were on fire. By the morning, I couldn’t even move a finger. My mum and Henry called the GP out, who immediately called an ambulance.

The paramedics were amazing and administered high doses of morphine to stretcher me to the ambulance. When we got to A&E we were seen pretty quickly by a kidney doctor who said there were concerns with my heart and kidney function. At 3am I was admitted to a ward and by 8am the next day I was surrounded by a team of doctors being told I had advanced active Lupus that had spread to my kidneys and heart.

Livin’ La Vida Lupus

So this is where the journey starts. After over a week in hospital to stabilise, having had my heart and kidneys under constant monitoring, I am back at my mum’s. I still feel awful but much, much better than I have for a while. It’s going to take a couple of months to start feeling better and it’s going to take time to learn about this condition and how to live life with it. Join me as I navigate the highs and lows of crazy Lupus life, and let’s see if we can raise awareness and understanding along the way.