How an aspiring Preston author battled back from brink of suicide
Christie J Newport, from Preston, has been plagued by serious health problems for most of her life, but after ground-breaking treatment she has enjoyed a new lease of life and is in talks to have her first novel published. Here she tells her story
My name is Christie Newport, I was born and raised in Preston. In 2015 my story was in the Lancashire Post. I was fundraising to receive stem cell replacement therapy. Due to a rare autoimmune disease my whole body swelled, agonisingly.
I was seven-years-old when I developed a cold sore on my mouth. My lips began to swell, they cracked in the corners and split down the centre. My parents took me to the GP, repeatedly, until I was sent to Royal Preston Hospital.
My school years were ruined by bullying. I had a lot of time off for failed surgeries. The surgeons cut away parts of my mouth, stitching it up. The swelling pulling and stretching the stitches.
I battled my way through high school. Standing at the front of the bus going home, while kids yelled ‘rubber lips’ and spat on me.
I could have given up, but I wanted to prove myself. During my first year of university I had a reprieve from my symptoms. Then it all started again. I spent a lot of time at hospitals, juggling illness with work and studying. Eventually I was diagnosed with Melkersson Rosenthal Syndrome. I also graduated.
I met my now wife, Amy, after university. The day I met her I’d been due to undergo surgery to fix my paralysed diaphragm, pull it down and stitch it to a rib. Somehow, it corrected itself and I took a punt, I met up with the woman I’d been talking to online. The following year it paralysed again, and she was with me when I underwent surgery. Sadly, it failed.
Afterwards everything went downhill, my disease started attacking my body. I swelled up everywhere. I often needed a wheelchair. I could hardly get out of bed. It felt like my head was in a vice, my body about to burst, my organs growing too big to be contained. Putting my feet on to the floor was like standing on nails. I was suffocating, my epiglottis and larynx swelled, my diaphragm paralysed. Bullying made me believe I was ugly, now I felt repulsive.
I looked into assisted suicide in Switzerland, I met the criteria. Amy and my family didn’t react well, they begged me to reconsider. We researched and discovered stem cell replacement therapy in America. The total price was around £14,000. I agreed to fund-raise. I appeared on TV and in newspapers and magazines. After only three months we reached target. I’d expected to be ridiculed, instead I received nothing but kindness.
I had the treatment in Santa Monica, the doctor gave me an infusion, saying I’d feel amazing afterwards, but it wouldn’t last, that it was a taste of what was to come. I didn’t believe him. Later I got out of my wheelchair on the pier and walked. I rode the carousel, Amy gripping the centre bar. I asked why she’d agreed to ride, her answer was, “do you know how long it’s been since you’ve wanted to do anything? I was never going to say no.”
A week later we were home and life improved. It wasn’t magical, like the day I had the infusion, but it was liveable. I began re-establishing friendships and family relationships. We moved to Cumbria. I knew I’d be spending most of my time at home, so I wanted to be surrounded by peace and beauty.
I started to deteriorate slowly, then very suddenly. I was in and out of intensive care. On one occasion I developed necrosis – a form of cell injury which results in the premature death of cells in living tissue. The doctors couldn’t work out why or how to stop it.
They told Amy to call my family as my body was failing. My blood pressure and oxygen dropped dangerously low. I could hardly breathe and was terrified I’d lose limbs. In the end I lost some of the tip of my finger. I was feeling sorry for myself when I looked across the bay and saw a lady who’d just had her second leg amputated. I reassessed my thinking.
For years after I was given copious amounts of morphine for pain. I had a central line inserted while I was conscious, putting a tube into my neck to take blood. This was done because my veins were not reliable, they were overused for medications and deep because of the swelling. We desperately wanted answers. We researched as much as we could, but a rare disease meant there wasn’t much information. We wrote to specialists and travelled to hospitals across England.
I was admitted to hospital for five weeks, given IV morphine, Fentanyl morphine patches and more besides. That night I woke up, shivering violently. I had a fever. A nurse asked for a urine sample, I could only produce blood. They did a bladder scan and blood tests. My blood pressure dropped; everything was in the danger zone. I had e-coli, a UTI and sepsis. My doctor contacted a neurologist in Newcastle, who was asked to take over my care as she’d treated two people with MRS in the past.
Eventually, I was transferred. That night the sepsis resurfaced along with a bowel infection. The neurologist also explained morphine shouldn’t be used for chronic pain. It was being used incorrectly and was causing pain and symptoms. She began withdrawing me. In the space of a week I’d done it, the neurologist said I’m a strong woman, that she’d given me a bar to aim for, expecting me to fall short.
After returning home it took months to get the effects of morphine out of my system. My neurologist referred me to Guys Hospital in London, as she thought I may have been misdiagnosed. As soon as they examined me, they confirmed it. I had Orofacial Granulomatous. My immune system fights itself, resulting in painful swelling and lethargy. I started a treatment of Infliximab infusions. It suppresses my overactive immune system. I’ve been doing well ever since.
I used to love writing, but had been too unwell to pursue it. I’ve now completed my first book, a psychological thriller, titled Whittingham. I’ve set it in Whittingham Asylum in 1952. It called out to me as a place history was forgetting. Had I not spent a great deal of my life within a hospital setting, perhaps I wouldn’t have felt the affinity I did with the patients who’d lived there.
I have been extremely lucky to win opportunities for mentorship and guidance with Harriet Tyce and Nadine Matheson. I was also sponsored by Red Dog Press to complete a course with Awais Khan. I have received unofficial mentorship and friendship since the start from Diane Chamberlain. I am also grateful for all of the help, guidance and support I have received from
Ian Skewis, Amer Anwar, Jenny Blackhurst and many more. The writing community has welcomed me with open arms and given me a sense of belonging.
Christie is in talks with literary agents and publishers and hopes to see her book published next year.