CVID & The Journey to My Diagnosis: A Story of Illness, Perseverance, and Discovery

The Journey to My Diagnosis: A Story of Illness, Perseverance, and Discovery

In my first year of university, I entered the music program full of excitement, ambition, and plans to pursue my dream of becoming a classical singer. But my journey quickly turned into a frustrating and confusing series of illnesses. It all started with a simple throat infection, or so I thought. I was just 20 years old, and when I visited the campus doctor, I was told that I should be able to fight it off. I was given antidepressants and sent on my way with no real explanation or further investigation.

But the infection didn’t go away. It worsened, and soon it spread to my voicebox. I was prescribed 250mg of penicillin, but still, the infection lingered. My coursework became harder to keep up with as my health deteriorated. I requested extensions, but it wasn't long before I had to resit my second year under medical circumstances. I was constantly sick, and the antibiotics just kept coming., and they always came late.

When I finally went home to see my childhood doctor, I had already been battling a persistent cold for two years. By this time, I was prescribed 500mg of flucloxacillin, but nothing seemed to help. I ended up dropping out of university, the place where I had once been so hopeful and driven, and I left behind my dreams of pursuing a career in music. Just a few months before enrolling, I had placed 3rd in the Llangollen Eisteddfod, and had been part of the BBC National Chorus of Wales at the BBC Proms. But the endless cycle of infections and antibiotics derailed everything.

It wasn’t just the throat infections that plagued me. It turned into one sinus infection after another, each requiring more antibiotics and more antidepressants. I was tired, frustrated, and in pain. I wanted to sing, but my body kept betraying me.

Then, in 2017, I went on my first entertainment contract abroad to Zante. It was an incredible experience, filled with sun, sea, banter, and ABBA medleys. But then I woke up one morning with a golf-ball-sized lump under my armpit, which required emergency surgery. I had to call my manager, a seasoned entertainer, who sent me straight to the doctor surgery and he sent me in a car to a cosmetic surgeon. The surgeon drained the lump and took samples of the pus and blood due to its proximity to the lymph node.

A nurse translated for me, as the surgeon only spoke Greek. “You have an immune disease,” she said. “When you go back home, ask your doctor which one it is.” But when I returned home and visited my doctor, I never got the answers I was hoping for. Blood tests were done, but no one ever told me what the results were.

I took another contract abroad, this time to Kos, where I worked with a production team for TUI, performing in the glitziest shows I had ever been part of. Yet again, I had blood tests, and my GP suspected either AIDS or leukemia. Fortunately, it wasn’t either of those, but it was a terrifying thought.I took another job, this time in Lapland, where I played Princess Jasmine in a beautiful panto.There, surrounded by the northern lights and the magic of Santa, I decided that if I was dying, I wanted to do it having truly lived.

When I finally returned to the UK, I was referred to an immunologist. I had no idea what to expect, but I was eager for answers. The doctor, who reminded me a lot of Dr. Hansson from Holby City, sat me down and immediately addressed the "elephant in the room" his words.... “You have an immune disease,” he said, “It’s called CVID – Common Variable Immunodeficiency.” In that moment, everything changed.
He asked me if I needed a moment to process, but I know what I am like, so I just asked "What's next?"

I had no idea what IgG, IgA, IgM, or IgE were, but the doctor explained that my levels were so low that some proteins were undetectable. There was no magic pill, he told me, but there was a treatment. A treatment that would be funded by the NHS and come from the blood of others.
Contrary to popular belief, the NHS isn't always "free medicine" and this medicine entailed filling in a lot of paperwork to secure funding via a trust. Too much of it to read, but I sat in one of the infusion chairs, in a room full of people in various states of decay, and signed it all. 
I'd like to take this next moment, to thank all plasma donors, thank you so much for what you do. It is because of you, that I am, and others like me are alive. 

The pandemic was grim, and it was the first time I was ever classed as "vulnerable and disabled"

I remember walking out of the hospital with my mum, feeling both relieved and overwhelmed. For the first time, I knew what had been causing my years of illness. It wasn’t my fault, it wasn’t something I had done to myself. It was something I was born with, and it was real.

My first treatment, about a month later was a four-hour session of infusion therapy, and I remember feeling a mix of emotions – relief, fear, uncertainty. But I knew that this was the start of a new chapter. My life was changing, but I was finally on the path to understanding my body and taking control of my health.

I had taken a contract in Cyprus as an entertainer, in Paphos, it was January 2019 at this point. I was anxious about finding out whether I could stay or not, a letter from my GP surgery threatened to rug pull me, saying that anyone who leaves the UK for longer than 3 months is classed as an expat. My consultant wrote them a stern letter back, and he fought for me to be able to do both, and gave me Doxycycline as a stop gap, while the infusions came through. 
Legend. He never gave up on me, a trait that continues with him, he always fights for his patients. So does the prof. he works under, and I had found some of his talks on youtube, while the infusion was pumping. 
He found the letter from the dr. surgery in Zante. "This is all Greek to me!" he said, gleefully. but then told me that he was an expert in his field. At least there was some humour in it all... 
Though for a while at my local GP they were constantly between (sings to old-school Maybelline intro) "Maybe she's born with it.... Maybe it's HIV....."

(Ironically I got this ink in 2013, after dumping my then partner, 
the word "Sisu" is Finnish for "The Extra 10% when you feel like giving up on life itself" and the left arm is now my IV and Blood test arm! I didn't know that at the time, but it's a good reminder not to give up! )

As I left the hospital that day, I had one last question for the immunologist: “Is it contagious?” He laughed and assured me that it wasn’t. It was something I had been born with, and it wasn’t going anywhere. But now, at least I knew what it was, and that was the first step toward reclaiming my life.
Though there would always be changes and new limitations now, having to fly back and forth from Cyprus every 2 months for checks, dosage changes, blood tests... the works.. 

I was started on SCIG after a couple of treatments, manual push injections... 
They were pre-filled syringes to be taken every other day, and I was on those for 2 years... 
Though I had to use butterfly needles into the fatty layers of skin in the thigh or lower stomach... which HURTS.
Flying back and forth with this medicine was also difficult, 
needing paperwork to prove what's in needles and syringes etc, and booking flights through special assistance!
Sometimes that entailed ending up in that little room, with armed police... 
Fun... You learn to check in hours before into departure just in case.... that's a tip from me.. You are welcome. 

It hasn’t been an easy journey, but it has been a transformative one. I’ve learned to live with CVID, to manage my health, and to find strength in the face of adversity. And while it may have taken years for me to get the answers I needed, I’m finally in control, and I’m ready to share my story with others who may be going through something similar.
I had read too many horror stories on the internet and the pandemic was even worse. 
Plenty of people to tear you down, and tell you to humble yourself and brace yourself for the worst, mourning your own life, as if you were already dead and stifling your expression. 
That's why this blog is called "Immunity-Unfiltered" hahaha! 

If it helps just 1 other person, maybe another girl just like me, then it's worth it. 
I owe others that, and I owe it also to myself to not wallow in it. 
To not allow living within limitations to limit me and my expression as a human being, and to DO SOMETHING WITH IT! Even though I will never get better, I won't let it make me BITTER. 

If you’re struggling with your health, don’t give up. Keep pushing for the answers you deserve. Sometimes, it takes time, but your story matters, and your health is worth fighting for.
YOU are worth fighting for. 

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If you or someone you know has experienced similar health struggles, know that you are not alone. Feel free to share your story, and together, we can help raise awareness for those living with immune diseases like CVID.

Stay LOUD, 

LET'S BE F***ING UNFILTERED! 

X

C