A woman has shared her traumatic ordeal after she was told that her body was “slowly dying” due to her organs shutting down.
Ivy Adelle, 27, an estate agent from San Francisco, US, began feeling very weak and noticed her stomach starting to swell when she was 15-years-old.
As she was a teenager, she didn’t take much notice of her symptoms and despite experiencing frequent nausea, as well as having urine the colour “of cola” she didn’t think anything was wrong.
She recalls having her period at the beginning of the school year, but realised two months later that she hadn’t had another and soon, she became so fatigued that she would often fall asleep during class.
Ivy didn’t panic despite the decline in the health, until she had her period for one day at the end of the school year – and the blood was a “blackish colour”.
“I was fearful, I thought I had cancer or something was really wrong with me,” Ivy told Jam Press.
“I was scared to go to the doctors because I knew they were expensive and I didn’t want to burden my parents with any problems in case I was fine and just overreacting.
“I had severe focusing problems and I couldn’t pay attention in school, but assumed it was due to my lack of care or that I wasn’t trying hard enough.
“I heard that sometimes girls stopped getting their periods because of amenorrhea and as I was a little bit underweight, I assumed that was why.
“I felt like I had sandbags all over my body, as well as severe headaches and bouts of mood swings, loss of appetite and some minor pains.
“[My stomach] became somewhat large and felt stiff, as well as hard and got worse four weeks before I was hospitalised.”
In June 2010, Ivy’s body couldn’t take much more and she fainted in front of her parents, who called an ambulance and rushed her to hospital.
At first, she was told that she had an eating disorder as she was pale and her blood sugar was low – but doctors soon found that she was actually suffering from organ failure and was at risk of dying.
Ivy said: “I was shocked to realise I was dying and this is what slow death felt like.
“I was very much out of it due to the low amounts of blood in my body and it was pretty terrifying.
“I was told to call my closest friends and family, but I felt very upset and angry as well as numb because I was in and out of pain.
“I felt like I was being punished by life and I wanted to enjoy my friends and family – I was so young.
“[They diagnosed me with] auto-immune haemolytic anaemia along with cold agglutinins disease and antiphospholipid syndrome.
“Unfortunately, at the time, they didn’t realise that this was all caused by systemic lupus, because testing for this is extensive and can take many years.”
In June 2018, Ivy was diagnosed with lupus – a disease where the immune system attacks healthy tissues and organs.
Auto-immune haemolytic disease is a rare red blood cell disorder that produces antibodies to destroy these cells and is coupled with cold agglutinins – the onset – as well as antiphospholipid syndrome, which causes the antibodies by mistake.
It is believed that the blood disease was a result of Ivy’s undiagnosed lupus, coupled with severe amounts of stress.
As she needed a blood transfusion immediately, she was flown to a hospital in Sacramento which had experienced professionals who could deal with the extent of the disease.
Ivy said: “It was a race against time to find a blood match and typically, the blood is heated up [before the transfusion] but as they had to get going, I remember the blood being cold in my veins.
“My best friend at the time brought my sisters down with her and her mum to visit me, which was an act of kindness I’ll never forget.
“I had many tests done and was pricked every single day, which was exhausting and I was given many drugs to help with the severity of the pain – but sometimes this didn’t even touch it.
“I wouldn’t laugh or smile because my body was in an immense amount of pain, but my brain hurt far worse than my body.
“I did a lot of deep digging and cognitive behavioural therapy to learn that I need to prioritise my mental clarity and seek forgiveness for the things that have affected me.
“The blood disease has stayed in remission, but I did get sick again when I was 23-years-old and it’s taken me many years to recover from that incident.
“My lupus flared up severely and I was treated with the wrong drug by a medical professional who refused to accept that I had lupus, which caused me to go into anaphylaxis.
“I couldn’t breathe and had to go to hospital, but then I got my official diagnosis and was put on an intense treatment programme.”
Ivy still suffers from chronic pain and has since developed fibromyalgia – a long-term condition which causes pain all over the body – after a car accident.
As this causes sensory issues for her skin, she has to be careful about the clothes she wears and as she also has many food allergies, she is very mindful about the food she eats.
Ivy added: “I learned I had [food allergies] by keeping a food journal and the reactions where I am now conscious of not eating foods high in gluten as they cause a lot of pain.
“I focus greatly on my health and eating, because I am passionate about dietetics and food science, which I thought would be my answer and cure for this – but it wasn’t.
“I still have lupus flare ups from time to time, but I am deeply in tune with my body and realise that it’s either the food I’m consuming or external factors.
“My goal is to figure out all the factors that trigger this and share my journey with others.
“I’ve been through so much with mine and I want people to know there is another side to life where they can see themselves in the place they want to be.”
