‘Worst case, you’ll end up in respiratory failure.’ I was admitted to the hospital. Little did I know, 17 months later, I’d still be there.’: Woman diagnosed with rare autoimmune disorder, ‘I’m lucky to be alive’

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“The 13th of February was the day I was first admitted to hospital. Little did I know, 17 months later, I would still be there. I went in for an endoscopy because they wanted to take another look at my stomach. I had been having stomach problems for years at this point, so they wanted to see if they could figure out what was causing it. I woke up from the procedure, and I remember not feeling myself at all. I was very weak, and I had terrible double vision.

Courtesy of Angel Sheen

The nurses just assumed I was still feeling groggy, so they said I should stay the night, just to be safe. The next morning, I was still feeling weak all over and I could barely walk. No one knew what was happening. They checked my blood and found out I had very low potassium.

We all just assumed the potassium was the reason I was feeling weak. But even after having potassium infusions and my potassium back in the normal range, I was still so weak. They referred me to physio to see if they could help me. I would take a couple of steps and then my legs would give in. I was so terrified.

Courtesy of Angel Sheen

After a week or so, I hadn’t made any progress so I saw a neurologist. He examined me and asked about any other symptoms I’ve had in the past, and I’ll never forget when he said the words, ‘I think you have myasthenia gravis.’ Myasthenia gravis is an autoimmune neuromuscular disease that causes muscle weakness. I had lots of painful tests done, which confirmed the diagnosis.

I had never even heard of it and was so shocked I had been diagnosed with this. He came back the next evening and stayed with us for hours, telling us all about the condition. He didn’t sugarcoat anything, which I appreciated. He said, ‘Worst case, you could end up in respiratory failure with a tracheostomy.’

Courtesy of Angel Sheen

About a week later I hadn’t improved at all, despite having physiotherapy, and started new meds. I deteriorated a lot more, couldn’t swallow my meds, and was feeling so weak all over. The nurses were worried, so my neuro doctor came to see me. As he sat down and started talking to me, my eyes started to shut. I could barely breathe. It felt like someone was sitting on my chest. I just remember hearing the emergency siren being pressed and lots of people running in.

Courtesy of Angel Sheen

They rushed me down to ICU. I can hardly remember what happened after because I was on all kinds of sedatives. I was intubated (breathing tube) and started on plasmapheresis, which is a machine similar to dialysis that cleans the plasma out of your blood, which contains antibodies, and replaces it with a donor’s plasma. This was the most terrifying thing I’ve ever been through in my life. The only way I can describe it is being trapped in your body. It’s like you’re telling your body to move, but it just won’t.

Courtesy of Angel Sheen

Nobody was sure I’d make it, but I did. ‘This was a blessing in disguise. God knows what would have happened to you if you hadn’t gone for that endoscopy, Angel,’ my mom would always say. I started to improve, so they decided I was stable enough to go to a ward. I was moved to a neuro-rehab ward. At this point, I was basically paralyzed. I couldn’t move a muscle or speak. I started intense physiotherapy, and my first goal was to try and wiggle my toes, then move my legs, then sit at the side of the bed. It was the hardest thing I’ve ever had to go through. There were lots of times I felt like giving up.

I didn’t think I’d ever be able to walk again, but I did. After months and months of hard work at physio, I could finally walk. After 17 long months in hospital, I was finally discharged. All the nurses and doctors from my ward lined up across the ward and cheered for me. That day was definitely the happiest and most emotional day of my life. It’s just crazy how going through something like this can make you appreciate everything you used to take for granted.

Courtesy of Angel Sheen

This hospital stay is definitely something I’ll never forget. I’ve met some amazing people and made some lifelong friends I’ll never forget. What’s kept me going now is knowing how far I’ve actually come and how lucky I am to be alive. If anyone reading this is going through something similar, I want you to know things will get better, and also don’t be too hard on yourself. Celebrate every victory, big or small. My Instagram DMs are always open for anyone who needs to talk.”

Courtesy of Angel Sheen

This story was submitted to Love What Matters by Angel Sheen of Liverpool, England. You can follow her journey on  Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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