Hello everyone. Today I’m talking about covid-19. I imagine many of you are sick to the back teeth of articles and reports on the subject. And I can’t blame you, it’s nearly all you hear about these days.
However most articles focus on covid deaths or government responses. What they fail to address is the experiences of the people who survive. I think if more people understood what the virus does to the body and mind, there would be less of the ‘I’m young and healthy, so if I catch it I’ll be alright’ attitude around. So with that goal in mind I will tell you my covid story.
Life Before Covid-19
It’s hard to remember a time when Covid-19 was just a vague illness in China, but that was only 6 months ago. Back then most of my friends were giving the ‘it’s just another flu bug’ line, but I took it a bit more seriously. I followed conversations about infection and death rates with nerdy fascination.
When the virus hit UK soil I was quite prepared for social issolation. I mean I’m an anxious introvert, I had been preparing for this all of my adult life.
So how did you catch it?
A question I’ve been asked a billion times in the last 4 months and the answer is I don’t know. In the week leading up to the onset of symptoms I only went out to go to work. I cleaned a local pub a few hours a week. Social issolation was easy as the pub was empty that time of the morning.
However I did take the bus home. A 3 minute ride in a near empty bus is something I never thought would put me at risk. I can’t say for sure, but this bus ride seams to most likely place I caught it. The alternative is that Mr A was an asymptomatic carrier of the virus. He never had any symptoms before or after I got ill.
How did it begin?
When lockdown started I took my temperature every morning. This was my first symptom, a slightly raised temp of 37.8. I wasn’t that worried, after all I was young and had no underlying health conditions.
The following day I developed a horrendous headache. I was also off my food, but that wasn’t a recognised symptom of covid-19 at the time. Day 3 (Saturday) saw the start of a cough.
On the Monday morning I actually felt better. My temp had dropped and the chronic headache had finally gone. It was the end of March, the 31st and the weather was unseasonably warm, so I decided to take a little walk. This was a bad idea. I only walked round the block, but by the time I got back to the front door I couldnt breathe.
Mr A was concerned and called the NHS 111 line. They ran through a load of questions then told us to call my GP. His advice was if I couldn’t breathe I needed an ambulance.
The Ambulance and A&E
Mr A called for the ambalance and they arrived quite promptly. I thought they would check me over, give me some pills and be on their way.
When they arrived they attatched some sticky things to my chest to measure pulse, BP and most importantly my blood oxygen levels. They gave me oxygen via a mask, but could not get this number to rise to the minimum safe level of 94%, so decided I needed to go to hospital.
At this point panic set in. Going to hospital on my own, away from Mr A was not good. Also I was really struggling to breathe at this point. I was coughing so much I couldn’t control my bladder and was mortified by this.
But I still didn’t grasp just how seriously ill I was. I was taken to a covid ward where two doctors examining me. They upped the amount of oxygen I was given but my blood oxygen level didn’t rise. I remember the one doctor saying he couldn’t believe they were considering this for someone as healthy as I looked, but the only option left open to them was to put me into an induced coma.
I will tell you that I still wasn’t really worried at this point. My memory tells me I wasn’t and I don’t recall the thought ‘I’m going to die’ ever crossing my mind. Mr A however had a text on from me that said I was scared. That was the last message he recieved from me for a long time.
ICU and the induced coma
I was taken to ICU early on the 1st of April. April fools day, I’m sure there’s a joke there somewhere, but I don’t know what. I know I was sedated for 3 weeks. During that time I was given invasive mechanical ventilation (IMV). This involves putting a tube down the patients windpipe and being attatched to a machine that breathes for the patient. For reasons I dont know I was given a tracheotomy during this time. So rather than the tube going in my mouth, a hole was cut in my neck and the tube inserted there.
I was led on my front while I was in a coma and had physiotherapists regularly slapping my back to try to shake loose the phlem that my lungs were producing as a reaction to the virus. Basically I was drowning in my own secretions.
The worst part of those 3 weeks were for Mr A and my family. Its strange, I can write quite easily about what happened to me, but when I talk about what Mr A went through the tears come thick and fast even now.
I now know only a third of people put on IMV survive. This figure goes down further if other organs are infected. So when I developed a kidney infection and had to go on dialysis they didn’t hold out much hope. There were several occasions in those 3 weeks where the doctors thought I would die. Mr A had agonising nights waiting to hear if I had made it through the night. It breaks my heart that I put him through that.
I would like to say I remember nothing about those 3 weeks, after all I was in an induced coma. This isn’t true though. In the early days of the covid crisis which was when I was in ICU they were using a huge amount of seditive to put covid patients into a coma. They later realised this still wasn’t enough to ensure patients were completely unconscious. This level of awareness, usually in touch and sound led to something known as covid hallucinations.
I experienced terrifying dreams that were connected to what I was physically experiencing. I still can’t tell people what the dreams were and doubt I will ever be able to describe them or the horror they envoked. I can say they involved me being unable to move, being wired up to (or part of) strange machines, and the overriding feeling that I’d done something really terrible for these things to be happen to me. I’m not religious, but I was convinced I had died and gone to hell.
Waking up from an induced coma isn’t the same as waking up from a general anaesthetic, it takes a long time. At the time no visitors were allowed in hospitals, so after I was taken off sedation ICU staff used an iPad to let Mr A facetime me, because familiar voices are more likely to get a response from patients.
I’ve no recollection of these calls, but am told it took a second call before I opened my eyes, and a third before I made any sign of recognising Mr A. It is worth noting at this point that because I had the tracheotomy tube in, I was unable to talk.
My memories of first few weeks after coming off sedation are vague, but I do remember being confused and very frightened. The staff wore boiler suits rather than gowns. And many of them wore masks that covered their whole heads and were attatched by a tube to a pump that fed them air. They looked like the scientists who took ET away in the film.
As I couldn’t speak at that time I had to write to communicate. This wasn’t easy as I was confused and very weak. I remember managing to writing two sentences and asking a nurse to pin them to the end of my bed for me to see every time I woke.
The sentences were ‘I am Tracey’ and ‘I am not a monster’. The nurse thought I believed I was a bad person but it was far more basic than that. I didn’t know where I was, who I was or even what I was. That sounds odd, but I genuinely didn’t know if I was human or not. Following on from my coma dreams I believed I was somehow a part of a weird metal spider like machine.
Because I was frightened of the machines I tried to eascape from them. I constantly pulled at the wires and tubes that were attatched to me. I remember pulling a feeding tube out of my nose and throwing it in disgust on the floor. I was given another feeding tube and a pair of mittens to stop me pulling.
Slowly I became more aware of what was going on around me, and more coherent in my thoughts. It was around this time I was moved from the main covid ward on to a side bay in ICU. It was a nicer bay with a window, and I was the only patient in it.
Out of danger and learning to breathe again
The move to the other side of ICU signaled an improvement in my condition. I was no longer at serious risk of dying, but that doesn’t mean I was well.
I had lost total use of my legs and had very limited use of my arms due to muscle wastage. My left arm was numb from the shoulder down to the elbow, probably due to the position I had been mying in while in the coma. I had a feeding tube up my nose, a normal catheter for urine and another tube up my bum for the other stuff. There was a line in one arm for the nurses to take blood from and another in the other arm for them to inject drugs into. I was still on the ventilator via the tracheostomy and and had wires attatched to record my blood pressure, blood oxygen levels, and pulse.
This is the one picture I have of that time showing a bit of what I was hooked up to.
On top of the damage to my lungs caused by the covid virus I also had several lung infections during my time in ICU. This meant I had a constant high temperature and was on IV antibiotics day and night. One of the antibiotics caused an allergic reaction and I came out in a nasty rash all over my body.
That was the physical state after 5 weeks in hospital. My mental state was something else. As I became more coherent I developed a fear of being asleep. This was due to the nightmares. They had changed somewhat from the coma dreams but were just as scary.
All were about me being involved in horrific accidents, falling through glass windows and being cut to ribbons, falling into the road and being run over by huge lorries. In each case although I was unjured I felt no pain. This somehow made them worse, so I just wouldn’t sleep.
The nurses told me off a lot in a nice way. They said I had to sleep, as that was the only way I would get better. I was given sleeping tablets but that just increased my confusion. In the end my body made me sleep, and after a few weeks the nightmares gradually went and the nights didn’t seem so bad.
The days dragged though. Anyone who has been in hospital will know they start early and finish late. 6am was first round of observations and blood tests, and these went on every 4 hours during the day. They took so much blood in the first few weeks that I needed a blood transfusion to put some back!!
The time in between obs went by slowly. Nurses and doctors would pop in to say hello. They regularly ask if I recognised them from my time in the other side of ICU, but most people looked the same. Just bodies with masks, eyes and hair. There were a few notable exceptions.
A small number showed an extra level of care that made them stand out from the crowd. A beautiful lady doctor who pulled down her mask briefly to show me her whole face, and held my hand while she spoke to me. A health care assistant called Mike who brushed my hair in the evenings, another Mike who took the time to chat to me at the end of his shift. These small acts of kindness were huge things to me at the time, a reminder that they saw me as a person rather than just a patient.
During this time I was in contact with Mr A via whatsapp and had started messaging my mum and a few close friends. But it was very hard not being able to have visitors. I cried a lot. Every day, and often several times a day. Whats more I began to feel very distant from the people I knew, as if they were characters in a book or tv program rather than real people.
One of the boss doctors recognised the harm this lack of visitors was causing, and after 6 weeks he gave special permission for Mr A to visit me for half an hour. He came a few more times while I was in ICU and it really is those visits that kept me going.
Having no voice
One of the frustrating things about my stay in ICU was my lack of voice. This happened because the tracheotomy tube was bellow my voice box. There were two main problems with being voiceless.
The first was practical. It was very hard to let people know what I wanted or needed. You might remember me mentioning writing things down as a method of communication, and that did sometimes work. However I still had to gain someone’s attention for them to read what I had written, and with no voice that wasn’t easy. Sometimes a nurse could be feet away, but oblivious to my efforts to communicate. This led to some hugely embarrassing accidents for me once my bottom tube was removed because I couldn’t get someone’s attention to ask for a bedpan.
The second issue was more subtle. Because I couldn’t talk many people didn’t talk to me much other than to say what medical or care procedure they were doing. They did however talk to each other. While moving or cleaning me they would chat to each other. Literally talking over me. This make me feel even more isolated and alone.
I mentioned above how certain people stood out from the crowd. One group of people who did this while I was in ICU was the physio team.
Physiotherapists are the nicest, most enthusiastic people you will ever meet. They are also rutheless in their goal of pushing patients to do what they believe the patient can achieve (rather than what the patient feels they can do) hence the nicknames they are given such as physio-terrorist or psycho-therapist.
During my stay in ICU the physios did a small amount of work with me on my arms and legs, but their main task was teaching me how to breathe again.
It’s amazing how quickly the muscles of the body including the lungs deteriorate when not used. They had to retrain my lungs to breathe. This was done by reducing the ventilation support I was given.
To start with support the machine was giving me was turned down for just 15 mins, then half an hour etc. It gradually built up so I could go several hours without support. But with the continued chest infections I had, the doctors often had to cut back on my hours off ventilation as when the physios pushed too hard it left me over exhausted.
Breathing through a tracheotomy tube unsupported using covid damaged lungs was hard. Imagine trying to breathe through a straw that is filled with snot and you might get close to what it was like.
The snotty phlem was a big issue. I was encouraged to cough as much as I could to bring up the secretions from my lungs, but often this wouldn’t clear it. So the nurse would have to insert a tube down my tracheotomy tube to suck out the phlem. It was as gross, uncomfortable and distressing as it sounds.
Slowly over a six week period my time off ventilation increased, and the secretions decreased. The next step was to spend time when I wasn’t attatched to the ventilator at all. Instead I had oxygen supplied by a little mask that was placed just under the end of the tracheotomy tube. I easily managed 12 hours a day with this system, so the doctor suggested we take the last step, removing the tracheotomy tube altogether.
You might think I was keen for this to happen, and I was because it ment a huge step forward in my rehabilitation and I would regain my voice.
However I was also terrified. Although I hated being attatched to so many machines, they provided a huge safety blanket. I couldn’t choke on my own saliva when ventilated and there was no risk that my lungs would stop when I wasn’t concentrating on breathing. I’d lost all faith in my ability to keep myself alive without the support of machines.
The doctor however knew I was up to the job, so my tube was removed and I became a fully independantly breathing adult again. It was actually much easier to breathe without the trachie tube in and speaking again was a joy. Although it took me a couple of days to remember I could answer rather than just nod or shake my head when I was asked a question.
With my tracheotomy tube removed I didn’t need ICU care, so after a grand total of 64 days I was moved to an accute respiratory ward upstairs. I wanted to leave with the minimum of fuss, but the staff insisted I had a proper send off, so they lined the corridor and clapped as I was wheeled away in my bed. Of course I cried.
That isn’t the end of my covid recovery, but I think it makes a good place to end this part of the story. Part 2 of my story is available here. .
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