Welcome to my blog, where Delirium becomes Reality….!

My name is Louise. I live in Cornwall (UK) and I LOVE living by the sea!

In November 2018, life changed dramatically for me, by accident and not in the most pleasant of ways! I had spent 3 years struggling to swallow solids and liquids and after numerous medical appointments, by pure chance, I was diagnosed with a rare condition, Achalasia. It’s a complicated condition, but in simple terms, the Oesophagus doesn’t work properly and becomes unable to move food and drink down into the stomach. I soon discovered there is no cure for Achalasia, and it’s often a progressive disease, but procedures are available to try and relieve symptoms.

I was offered a procedure known as a ‘Heller Myotomy’. It would hopefully improve the motility of the Oesophagus and allow me to have a more normal life. During the procedure, a cut would be made to the bottom of the Oesophagus to prevent it from contracting (helping with motility), but in doing so, stomach acid would have nothing stopping it from ‘splashing’ back up. To prevent this, a type of knot/wrap is created between the Oesophagus and Stomach. Still with me? I hope so!

The procedure was believed to have been a success. I don’t actually remember anything – my last memory was walking to theatre for the initial procedure and my next real memory would be almost 3 weeks later because unfortunately, things had gone terribly wrong. Now for the dramatic part!

Nobody realised that in the ‘wrap’, a hole had been created. Having gone undetected during my post-operative recovery, I suddenly took a rapid, dangerous descent downhill. All that I had drunk in the 24/36hrs following surgery, along with other fluids and medication, had been filling my abdominal cavity. I was critically ill and my body was experiencing one of the most severe types of trauma possible. I was rushed to theatre and during emergency surgery, my abdominal cavity was flushed with 10 litres of fluid. I had early onset sepsis, my left lung collapsed, my kidneys began to fail, I went into shock and multiple drains, tubes and lines were inserted.

Ten days later I found myself in the Intensive Care Unit at University Hospitals Plymouth (Derriford), ’emerging’ from a medically induced coma. Then began a very slow, painful recovery waiting for my Oesophagus to heal naturally, whilst being nil by mouth for the entire time, whilst learning to walk and rebuilding my lost muscle mass. My world along with that of my family, had been turned upside down. 89 days in hospital from ICU to the ward was, without a doubt, the toughest battle I’ve ever had to fight.

During my time in the ICU, I experienced severe Delirium: Vicious, vivid nightmares, visions and hallucinations. Delirium became my world, my reality. I can remember every little detail of every Delirium ‘vision’ I had. There was no concept of time, time didn’t exist. It is hands down, one of the most bizarre yet fascinating periods of my life!

Being a patient where I was, I was incredibly lucky to have been swept up by the ICU rehabilitation team. After some very scary months post-discharge, I was eventually diagnosed with PTSD and referred for therapy. Of course it wasn’t as simple as that, but that’s why I have blog posts….to allow you to fill in the detail!

So where am I now? Life has certainly changed. With a background in music education, my life of playing the saxophone has sadly had to be put on hold. However, new opportunities lay ahead. I am incredibly active in the world of patient experience. It’s become really important to me to share my experience and to support and educate others. I volunteer with the fabulous rehab team who have helped me so much and I’m now able to work with patients who are going, or who have gone through, similar. I am also actively working towards a career in healthcare and this is something that I am incredibly excited about.

I often find it strange that such a traumatic experience has changed me and my future in so many ways. I have become such a passionate patient advocate of ICU Delirium, rehabilitation and the patient experience. I want to use my experience positively. I have the empathy and understanding of what it’s like to have your world changed in an instant. To wake up and not be able to do the things you did before. To have to learn to walk again, even write again. I know how hard it is…..was, and I can use that knowledge to help others overcome their mountains.

My road is now very different and I’m excited about what the future holds.