I almost died last year, but no one told me why. It all started back in October when, as a 64-year-old type 1 diabetic who couldn’t stop vomiting, I was admitted to hospital with gastroenteritis.
That would be terrible enough, but instead of recovering in the few days it might normally take, my condition deteriorated at a rapid pace.
Initially, the doctors thought some vomit might have been taken into the lungs, leading to pneumonia. The pneumonia then could have placed a strain on the heart, which led to the heart becoming enlarged, causing para-pneumonic effusions and pulmonary oedema… but no one was sure. Specialist doctors suspected a possible heart problem, then something to do with the ovaries, but must likely – a virus.
I was treated with various antibiotics over the course of five days but they didn’t help. My condition worsened and I found it harder and harder to breathe. My oxygen requirements hit 98pc and I was moved into an ICU. Just a few hours later, at 4am, I was put on life support.
Though I wasn’t coherent for much of what followed, my husband and sister kept extensive notes. Because of them, I know I was reviewed by a microbiologist, but blood tests didn’t reveal a known infection. Or, at least then-known.
After eight days on the brink of death, my condition stabilised and I was taken off life support. But little changed over the subsequent five weeks. By that time I was desperate to go home. I wasn’t stable on my feet as I’d only been able to leave the bed two days in two months, but at least I wasn’t vomiting any more.
So, provided with a list of new medications, I was discharged on November 28. On reflection, I think I should have stayed in hospital; I needed to be monitored on the new medication, to see what it did, and I obviously needed a follow-up, but the discharge letter was not completed fully so I was left in limbo. Just me and my husband, who suffers from Parkinsons, to fend for ourselves without answers.
Home care visits were set up to assess my needs, which I was grateful for, but they dwindled and eventually stopped altogether. We felt abandoned. In early December, I started vomiting again and was rushed to A&E. I was discharged with a prescription for anti-sickness medication the same day.
I went into a form of personal lockdown. I was simply too weak to leave the house and my chest showed no signs of improvement. When coronavirus restrictions were eventually put in place in March, it made no real difference to my life. As I type 1 diabetic, I was told to shield, but I was already too ill to have a choice.
I continued to search for a diagnosis without luck. My GP did the best he could, trying to set me up with chest X-rays and blood tests, but he couldn’t do much more without the help of the hospital and cardiologist, and they seemed overrun by coronavirus. Eventually, the hospital suggested a treadmill test that could lead to an angiogram, but I could barely walk ten yards without becoming breathless.
In June, I asked my GP if I could be tested for Covid-19 antibodies because both the symptoms I had during hospitalisation and continued to suffer with seemed to be the same as those experienced by people who had contracted the virus. His response was that Covid-19 testing was not reliable and that my illness started in October, before Covid-19 was evident in the UK.
So, I paid for my own test, and I tested positive. I had coronavirus antibodies, and I had been nowhere but hospitals since December.
My first thoughts went back to October and November, being sick and then getting so much more sick. When I asked the doctor if he believed my illness could be due to Covid, he said I “could not have contracted the virus last year as there were no known cases in the UK.” The World Health Organization confirmed Wuhan’s coronavirus in January, and the first known UK case was found later that month.
It feels like I have been in quarantine, imprisoned, for months. It’s been hell. No diagnosis. No treatment plan. No knowing.
We’ve made a formal complaint with the hospital, who have acknowledged receipt with a confirmation letter, but there’s been no further communication.
I’m still awaiting a diagnosis. I’m still awaiting a treatment plan.
As told to Lela London