My recent experience of being critically ill is not the shortest story or the easiest to share, so I feel the need to explain it in full. It is an extraordinary story and I have met some amazing people along the way whilst I was being cared for by Guys’ and St Thomas’ Hospital, London.

The Beginning

My week began as normal although I did feel a little unwell. I visited the GP and was prescribed antibiotics for a chest infection. This did not change that on Saturday, I was flying to Ibiza. However, as the week went on, I started to feel worse and on Friday 12th July 2019 I was taken by ambulance to Queen Elizabeth Hospital, Woolwich with extreme breathing difficulties and it was suspected that I had sepsis. Sepsis is a life-threatening reaction to an infection. It happens when your immune system overreacts to an infection and starts to damage your body's own tissues and organs. I was sat in the Resuscitation Unit on maximum oxygen when I had a chest x-ray which showed a vast amount of damage to my lungs. I was diagnosed at this point with sepsis.

I did not realise the severity of the situation and in my mind I was still planning to be at the airport at 3pm on Saturday to catch my flight to Ibiza. I was moved to intensive care and then to isolation due to infection risk as it was not clear what had caused my sudden illness. It was possible that an infection had got into my blood stream from a mosquito bite I had, this was an initial thought of the doctors. I was very distressed; I was being given oxygen in many different forms as nothing seemed to be enough. It got to around 3am on the Saturday morning and I had been given a breathing mask which covered my whole face, I felt claustrophobic and I was exhausted. At this point, all my organs began to fail. It was at 4am the medical decision was made to put me into an induced coma to help me relax and give my organs the chance to repair. My family and I were just told I was being sedated, and my family were advised to go home and let me rest.

Mum contacted the hospital at 8am for an update on my condition, and was told it had deteriorated further and that a specialist team from St Thomas’ Hospital were with me and she was asked to come to the hospital promptly. My family were introduced to Dr Glover, a consultant in critical care and anaesthesia. Dr Glover told them that Queen Elizabeth Hospital had been in touch throughout the night and my condition had deteriorated so badly that he and a specialist team from St Thomas’ had to come and assess the situation. He said that I had taken a very bad turn for the worst, they had discovered a pulmonary embolism in my chest, my organs were failing and there was only really one option to intervene with a very intense and risky life support procedure called ECMO (Extra Corporeal Membrane Oxygenation).

ECMO works as an artificial lung, providing oxygen and removing carbon dioxide from the blood via the tubes, pumped through the ECMO machine and returning to the blood system to be pumped by the heart to the organs. Little did my family know at the time, only 1 in 5 people survive the procedure. With the go ahead from my family, due to ECMO being the only option at my chance of survival, the procedure was performed and I was then transferred from Queen Elizabeth to St Thomas’ by ambulance with 8 doctors and nurses; escorted by a specialist medical jeep to Intensive Care East Wing Unit 6.

Intensive Care East Wing Unit 6

I remember seeing black and being unable to move. All I could hear was my family and friends who I was unaware were surrounding my hospital bed. Next, I remember opening my eyes somewhere I definitely do not remember being last. I was blissfully unaware of my situation. Due to the amount of medication in my system, when I woke up I had no idea I was intubated and was attached to multiple machines in an intensive care unit. I did not know there was a possibility that my left leg was going to be amputated due to reduced blood flow. I also did not know that I was connected to a life support mechanism called ECMO due to severe respiratory failure.

From 13th July 2019 I had 24/7 medical supervision; a specialist ECMO nurse at the foot of my bed to monitor the machine and another nurse by my bedside. After 6 days, I was stable enough to come off of the ECMO machine. I still required a lot of oxygen, and I still had tubes and needles coming out of me from head to toe but the next step was to get me back up on my feet.

It was discovered that I had a blood clot in my left leg which was indeed the cause of the pulmonary embolism. Luckily, the blood flow had improved in my left leg and it was no longer as swollen and discoloured. After a couple of days, some of the physiotherapy team gave me a visit and wanted to get me out of bed. I could not believe that after a week I had lost what felt like all my strength and ability to walk. I was also being fed through a feeding tube and my muscle had depreciated more than I could ever imagine. I found myself in a wheelchair and it stayed this way for multiple weeks even just up until my hospital discharge.

Each day in intensive care I had some form of rehab which aimed at restoring some of my strength and getting me mobile. I was having test after test, my bloods were sent all around the UK to try to establish the root cause of my illness. Sadly, the tests were showing nothing yet so the only option was to keep testing, keep monitoring and see what happens.

Due to diligence care and attention from the team in intensive care, I was moved from intensive care to a ward within the hospital. At this point, the only way was up and I was improving every day, much better than expected.

William Gull Ward

On my first few days on the ward, I had a few fainting episodes but other than that I was starting to feel much better. Then my condition began to deteriorate and I felt very unwell again very quickly.

Blood tests showed that my infection markers were insanely high, the highest figure I can remember as being 432 when in any regular healthy person, the marker would be a number between 0 – 4. I had picked up a secondary infection on the ward and was moved to an isolated room. The doctors were unsure whether it was infection or inflammation that was in my system making me so unwell. Bad health meant that I was unable to continue physiotherapy and I needed a blood transfusion as well as intravenous antibiotics.

At this time, I was experiencing agonising pain in my right groin to the point I could barely move. I insisted that something was not quite right. I had an ultrasound scan which showed that I had another blood clot, this time in my right leg. I was told I had deep vein thrombosis in both legs, which was likely to have been caused by ECMO and is extremely rare, especially for someone aged 22. I was promptly started on blood thinning medication and vascular surgeons were consulted to possibly operate to remove the clots due to their severity. But this was not to be.

I had been complaining of headaches and problems with my vision. I had an MRI scan which showed I had a minor bleed on my brain which was also likely to have been a repercussion of ECMO. The news of the minor haemorrhage on my brain meant that surgery on my legs was ruled out as it was far too risky. This was upsetting news and it seemed as if nothing was going right.

At this point, all the doctors could do was medicate and monitor me. I had now been on the ward for just over 2 weeks and there was still no clear cut explanation or diagnosis of my illness. I was using a wheelchair and a walking frame to get around in my room.

Day after day I was being visited by consultants from different teams, having different tests and scans, and physiotherapy. Two particular doctors came to visit me and this was a turning point in my story. Dr Lams (respiratory consultant) and Dr Agarwal (rheumatology consultant) came to my room one afternoon and this was the first time I had met them. After a long conversation they decided that I was to be medicated with steroids. Over the coming days, the steroids appeared to get the condition of my health under control and my symptoms and various test showed this. I was feeling so much better and I really pushed myself in physio, I was determined to go home.

I was discharged and able to go home on Monday 12th August, exactly a month after I arrived.

The Aftermath

I was to be followed up with both physiotherapy and respiratory therapy and to be seen by Haematology and the Interstitial Lung Disease Clinic for further tests. I was given so much medication that I could open my own pharmacy! I left hospital with no diagnosis and we still had no idea what caused me to become critically ill. I now have around 20 tablets to take each and every day.

The Biopsy

I had a suspicious lump on my left chest wall by my breast which I had pointed out to my GP a few days before I was admitted to hospital. In the façade that was my time in hospital, this lump did not seem important compared to all other problems I was having. I was initially told this lump was a lipoma, however Dr Lams insisted it was not. He arranged for me to see a plastic surgeon to have the lump removed and this was to be done urgently.

I had the surgery within a week. It was still a very high risk for me to go under general anaesthetic however it was now very important for this lump to be removed as it could possibly have given an explanation for the condition of my health.

Planning My Recovery

Whilst I waited for the results of my biopsy, I had various other appointments. I was seen by Haematology on September 3rd to discuss both my pulmonary embolism and deep vein thrombosis and figure out the next steps in my recovery. I was sadly told that this recovery was not a quick one, and could possibly take years. It was also discovered that I had developed post-thrombotic syndrome, and this was severely affecting both my mobility and self-confidence due to the appearance of my legs. This is all managed with anti-coagulants, and there is a chance I could be on blood thinning medication for the rest of my life.

On the 17th September I was given the ‘all clear’ from my biopsy and my lump turned out to be a dead lymph node which had bled into itself, but it was likely to be related to what was happening in my body. I had a chest x-ray after complaining of pain in the left side of my chest and my left shoulder, the x-ray showed that whilst weaning off the steroids this had given rise to inflammation in my lungs again. The consultants have again increased my steroid dose and said that my condition could deteriorate very rapidly and I could end up critically ill again very quickly without medication. This particular appointment with my consultants was full of questions and answers. I have now been diagnosed with a very rare lung disease called acute eosinophilic pneumonia, a condition that will I will have to be medicated for and live with for the rest of my life. One positive that I took from this appointment was that I was encouraged to exercise again. The more exercise, the better for my course of rehabilitation and to manage my newly diagnosed lung disease.

Thank You

I would like to take this opportunity to thank all my family and friends and boyfriend for the continued support. Thank you to for each and every single card, gift, get well message and kind words during this difficult time. Thank you from the bottom of my heart, the support and kindness has really touched me and lifted my spirits at a time I needed it most and I will never forget it.

London Marathon 2020

I now have the opportunity to turn such a bad experience into something positive. I have set myself a goal to complete the London Marathon in April 2020 which is around 9 months after the time my family were told it was likely I was not going to see another day. I am running the London Marathon for Guys’ and St Thomas’ Hospital to raise funds that we all know are desperately needed and raise awareness to highlight how amazing the NHS can be. This is my way of saying thank you to an absolutely remarkable team of people who worked so hard to save my life and without them and their ongoing support with my recovery I wouldn’t be here to share my story with you today.