Paula

Brief Outline:

Paula contracted Covid in March 2020. She was admitted to intensive care, where she was mechanically ventilated. After a difficult recovery, Paula returned to work. Covid has changed her life dramatically. Interviewed for the study August and September 2021.

Background:

Paula works as an admin manager for the NHS. She and her partner got married to begin a new chapter after Covid. They have a daughter, aged 26. Ethnicity: White British.

More about me...

Onset

In February or March 2020, when people in the UK were just becoming aware of Covid, Paula’s partner, Becks, who - like Paula - works in the NHS, came home with a cough. She had also lost her taste. At the time, people worried about Paula, who says that she is overweight, and lives with fibromyalgia. To try and prevent catching it, she drank plenty of fluids, sat up in bed – but none of it mattered; she fell ill regardless.

Paula took to bed on the Sunday with flu-like symptoms. She was up and down in the night. Paula says she knew she needed help; she could not breathe between sentences and told Becks that she needed to call an ambulance. Becks initially called 111 – and after a long conversation they did advise her to call an ambulance. When the ambulance came, Paula had to go alone; this was the last time she saw her partner for two weeks.

Admission to hospital

Getting to the hospital was a great relief, as Paula knew she was now in good hands.

Paula’s temperature was high (39.4). Her oxygen saturation levels were dipping. There were a lot of people around her in A&E who said she was not very well. Paula remembers listening to the machines, and nurses talking to her, whilst she herself could not speak. At this point she thought she was probably ill with Covid, but she feels now that she did not understand fully how poorly she really was. The clinical team did a CT scan, an X-ray and a Covid test.

Before the test results came back, the respiratory consultant that Becks works with had been in contact with Becks to say he was certain that Paula had Covid because of the CT scan. When the positive test result came, Paula was transferred to a Covid ward and put on oxygen via a nasal cannula.

Paula needed to go to the bathroom frequently, but this was difficult as she had become increasingly breathless. The team placed a catheter to stop Paula from having to walk to the toilet. A friend who works in ICU outreach (the intensive care staff supporting other departments with the assessment whether patients could benefit from admission to intensive care) came to review her.

The consultant came to explain the CPAP (Continuous Positive Airway Pressure) mask, which Paula used for 2 hours and that she seemed to tolerate well. But again, her saturation levels dropped – to 43% – this time putting her at risk of respiratory arrest. Paula was told by the clinical team that they would have to ventilate her. Paula asked whether she could call Becks and their daughter Katie, but there was no time for this. So, she consented to ventilation, feeling terrified and saying to the nurses “Please don’t let me die.” It was a difficult ventilation; the staff accidentally knocked out two of her teeth.

Paula can remember hearing people around her all the time, and not being able to speak to them. She remembers Beck’s voice coming through a phone that was held up to her ear. She still remembers what she said – that Paula was doing well, and that she loved her.

Hallucinations/dreams

During the 9 days on the ventilator, Paula had extensive hallucinations that were very real and vivid to her. Paula described her dreams, which included arguments with family members, family members being in hospital but not coming to her bed, other patients scaring her so that she could not go to sleep, accidents, decapitations, dead patients in the ward being visited and put in coffins filled with ice. Paula remembers trying to get the sides of the bed down, so that she could get away. She was fearful of staff coming close to her, as she was afraid that they would hurt or kill her. These hallucinations have had a profound impact on her and she does not know whether she will ever get over them. Her partner Becks came to the ward once, and Paula remembers that Becks told her that everybody was praying for her. Paula does not think that she will get over “the fact of being in there and being that close to death.” She has spoken to a friend who has also been ventilated about her delusions and her experience with ventilation.

Waking up from the coma

Paula remembers being extubated; she heard somebody say, “Take a big deep breath”. Paula was still experiencing delusions then. The clinical staff were wearing masks, which made them look to Paula as if they were smiling, and she thought they held her hostage. Paula said: “None of it was real, but it seemed real, which was very frightening.” She feels strongly about that there should always be a relative or someone familiar present when somebody wakes up, as it is such a disorientating, horrific experience. Soon after waking up, she was able to speak to her family via the phone.

Paula thinks that she may have been “difficult to deal with as a patient”. She remembers somebody saying that she had pulled her tubes out, and she knows that she shouted things across the ward, to do with her dreams and also when people came too close. She describes her state as one of “constant panic”, in which she was afraid to sleep. She felt the lack of sleep is likely to have worsened her delusions even further.

The general ward

Paula was transferred to the general ward as soon as she was getting better. But her confusion continued to be “awful”. She did not know how to walk. She asked for a shower but ended up sitting in the shower for half an hour and falling asleep immediately after getting back into her hospital bed from sheer exhaustion. She continued telling other patients that she would help them to get out of there, believing that they were in danger. Due to these persistent delusions, it was decided that she would be better off at home.

Recovery

Life after the hospital admission has been hard. Although she had been home for 16 months at the time of the interview, “it feels like yesterday”.

Paula describes that, since she left hospital, she has become “obsessed with Covid”. She watches programmes to learn about proning and other things that has happened to her whilst she was unconscious. Paula describes that there is no getting away from Covid as the pandemic continues, and yet, talking about it is difficult, as people want to avoid talking about it. Paula keeps things in, because she feels that people are fed up with talking about Covid, including her family, who also care for Covid patients at work. Becks is great with questions, and Paula and she talk about Paula’s dreams and her recovery from Covid.

Paula is haunted by her hallucinations and memories. She rereads the discharge notes from ICU. This ‘diary’ helps her to some extent, but “it does not answer what happened in the brain”. Covid has changed her both negatively – she has lost a lot of hair; she worries more; it has aged her by 10 years – as well as positively – she appreciates life more and has a clearer idea of who she wants in her life.

Paula is thankful for the care she has received. The staff worked incredibly hard and are still lovely to her when they see her in hospital. There are still people who have taken care of her when she was critically ill and who approach her or write to her to say that it is so wonderful to see her alive and well. In terms of support, Paula would like to speak to people who can relate to what she has been through. This would help her accept that she “was not going mad” seeing all those things in her dreams. Counsellors could not help her at this point, she feels, as they do not (yet) know enough about ICU delirium.

Because her pay was going to be halved in September, Paula has gone back to work, but at the time of the interview she still experienced brain fog; she forgets names and how to do things. When people ask how she is, she finds it difficult to tell them that she is having a horrible day.

A few weeks after the first part of the interview, Becks and Paula got married. Paula says she tried to use the wedding as a cut-off point to let go of some things and move on.

Messages to others

An admission with Covid to ICU can be terrifying but it can also make you appreciate life more. An improvement she suggests is making sure that patients are not without a familiar face around them when they wake up from the ventilator as this can be an incredibly confusing time.

Paula was very aware that mechanical ventilation meant that she may not wake up.

And when they admitted you to Intensive Care, what thoughts did you have about how sick you were? Did you have an idea of how ill you were?

Yeah. I just kept telling them to tell my family that I loved them because I didn’t know if I was going to wake up. And they were putting me to sleep but I don’t think I was fully aware that they were going to put me right out. And my friend, who works for the Outreach team, told the consultant that they’d got to tell me that they were going to put me to sleep, so they did tell me then, that they were going to put me to sleep. And it was frightening. It was terrifying. Because I may never have woken up again. But I wouldn’t have known anything, and I know that now, I wouldn’t have known anything about it.

Paula felt strongly that a family member should have been present when she was woken up from her coma.

And I think, you know, when somebody wakes up from being ventilated, I think that a family member should be there because it's pretty horrific to wake up from something like that and nobody is there that you know, yet they all know your name, but nobody is there that you know. And I had got this thing in my arm, I think it was a PICC line and I kept thinking it was a maggot, I kept thinking that was a maggot under my skin because it looked horrible. And my mouth was really, really bad, it was dry, and my tongue was so sore, and I wouldn't let anybody near me. And since then, I've developed a, I brush my teeth about seven or eight times a day, but I go through a toothbrush a week because I chew on my toothbrush and it's, for some reason it's settles me chewing on my toothbrush, I don’t know why but it's just I feel like I need something to chew on.

And my mouth has been bad ever since then, you know, my taste is not the same, my tongue is very sensitive, I don’t know whether that's, you know, because the big scabs that were on it. And I mean I spoke to Katie [daughter] and Becks [partner] on…they put a phone in front of me apparently and I kept saying that my hair was purple, and they had coloured my hair and could they come and get me and just because I didn’t know what they were going to do to me next. And it's like being tormented, that's what it felt like and I just…I don’t think I’ll ever get over the fact of being in there and being that close to death. I don’t think I’ll… and there's so many things, there's so many more things than that that I could tell you, but I'd go on and on and on, I would go on forever.

It's…and I've become obsessed with Covid, I watch programmes on intensive care units to see how other people…because I wanted to know what proning, I wanted to know what that was and what it entailed, so you know, I'm, you know, people saying you don’t need to know, but I do, I do need to know, I want to know what they did to me whilst I was asleep. Anyway, they did, they did a diary and as good as the diary is it still doesn’t answer how your brain works in respect of what goes through your mind, you know, when you're not at a conscious level and how can I remember it?  How can I remember all them things? And it's hard because I can't really speak to people about it because people are sick about hearing about Covid, it's been our lives for 18 months and people are sick of it.

Paula’s saturation levels could not be increased with oxygen supplied through her nose (nasal cannula) or a CPAP mask. She was then intubated and ventilated.

And then I was transferred down to ward five which was the Covid ward and I just didn’t…I don’t think I realised, they put a nasal cannula in and I don’t think I really understood just how bad it was until it was about…and a friend of ours works for Outreach, and she came on to see how I was and then she asked one of the consultants from intensive care to come and review me. And he came to review me, and I was sort of, I'd settled a little bit, but I was settled when I wasn’t up and down to the toilet. So, they said they were going to pop a catheter in to stop me from having to go across to the loo.

And then I remember the doctor saying they were going to try the CPAP mask on me, and they said explained to me that it was like putting your head out of a car window and you would, like, because they needed to get some oxygen in. So, they put that on, and I think I tolerated it very well apparently, but then about two hours later, I remember the doctor coming in saying that they needed to put me to sleep because my saturation levels were like 43 and I was at risk of having a respiratory arrest. And I remember thinking to myself oh God, I don’t know what to do because they were asking my permission and I kept saying to them, I think I need to speak to Becks [partner] and Katie, that's my daughter. I said I think I need to speak to them, but they couldn’t, they wouldn't, they said there wasn’t enough time to speak to them, because they needed to get me round to intensive care basically.

So, in the time that they were getting the bed sorted out, they left me on this CPAP mask and then I remember going down the corridor and looking at the lights and that and it was…I was terrified, and I kept thinking what happens if I don’t wake up? And I kept saying to them, please don’t let me die, don’t let me die, please could you just, like, be here when I wake up, can you be here, and they were brilliant, they were brilliant. And the next thing is…this sounds not…because for the whole time…so they put me to sleep, when they put me to sleep, they knocked two teeth out because I was really hard to ventilate. I don’t know why that was, but whether it was because I was so poorly, I don’t know, but they ventilated me.

Paula’s health care team decided that going home could help reduce her confusion.

And they…I stayed on there for a few days and then it was decided that I'd probably be better off at home because of my confusion, I'd be better off at home and obviously Becks [partner] could look after me. And I was there telling them yes, I can do this, and I can do that when I couldn’t do anything, but I was so desperate to get out of the hospital because I was…because you just become fixated on if you are in the hospital, and you are in with germs. And that's what it like when, you know, Becks goes to work in it now every day and as soon as she comes in, she puts her uniform in the wash and it's washed, but it's…it's a really strange time, it's been strange. And I did…I was better when I came home, I was better in my own home and with familiar, you know, with Katie and Becks around me, but even, do you know what, it still feels like yesterday, it really does feel like very raw, very raw.