A-Z

Experiences of Covid-19 and Intensive Care

Experiences of CPAP, mechanical ventilation and proning

Here you can listen to people talk about:

  • How treating Covid19 patients in ICU was from a clinical perspective
  • Experiences of wearing the CPAP (Continuous Positive Air Pressure) mask
  • Decisions about mechanical ventilation
  • Patient experiences of mechanical ventilation
  • Family members’ experiences around mechanical ventilation
  • Moving between respiratory support systems
  • Physiotherapy and proning

Please be aware that what people share on this page may be upsetting to hear and read.

Treating Covid19 patients in ICU

Treatment for Covid patients initially took the form of life-support and was later complemented with drugs as and when their efficacy had been proven, and they were approved for use. People who were cared for in ICU during the pandemic received care under circumstances that were both similar but also radically different from ICU care as it had been before the pandemic.

 

How was treating Covid19 patients in ICU different from treating ICU patients before the pandemic?

How was treating Covid19 patients in ICU different from treating ICU patients before the pandemic?

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As an individual experience for one patient, the disease and the way it's treated is going to be very similar to normal intensive care as it has been before the pandemic. But when you've got 10s or even at one point, hundreds of patients in an intensive care unit with the same disease, the need to scale up [of] what is an incredibly complex bit of healthcare technology and staffing fourfold in a matter of weeks inevitably requires us to try and simplify what we do to allow us to deliver intensive care at a much, much bigger scale. And there were lots of different things that we did, in many ways we simplified the treatment that we were giving. And part of that was easier because everybody had the same disease. So, in intensive care when I do a ward round, I might see 15 patients with 15 very different things wrong with them, whereas on a Covid ward around I've got 15 patients, all with the same disease. And so that does simplify some things, and makes it very easy in in that way. But also, we had to simplify how we managed ventilators. We had to simplify how we manage things like renal dialysis for intensive care patients, and that was all aimed at making it as easy as possible to do it safely. Whereas normally we would strive to deliver the highest quality care that we possibly could, we had to really focus on not making mistakes during the pandemic, and that was because we had a lot of inexperienced new staff working with us and they needed to get it right in a way that didn't harm the patient and that became really, safe care became our real focus, rather than delivering the very, very best care that we ever could, and that switch was a very difficult one for us as staff, because we're trained to deliver the highest quality care all the time. And as it turns out, that's very much in our DNA and we found that incredibly difficult as doctors as nurses as physiotherapists, and so on to change that philosophy and approach.

I think it's valid to take note of what great patient care looks like in peacetime, in non-pandemic times, but also to remember that it wasn't peace time, it was the closest thing we would have to a war in terms of the decisions that we had to make and the judgments we had to make and the difficult choices about stopping doing things that we knew were important in normal times, but that we just couldn't deliver. Because we couldn't do everything the same way, we had to make some changes.

I think the interesting thing about listening to that patient's voice is how resonating it is, what you hear them say and how much I find that I agree with them about the frustrations that they have and feel frustrated myself that perhaps we weren't able to prevent those experiences from playing out the way that they did.

 

What happens to Covid19 patients in intensive care?

What happens to Covid19 patients in intensive care?

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The vast majority of patients who needed to come to intensive care had breathing difficulties, so they had low blood oxygen levels, and some of those were treated with what we would call non-invasive things. You may have heard about treatments such as CPAP and non-invasive ventilation which really involved just a mask that you put on your face attached to a ventilator that supports breathing in that way. Higher oxygen levels - of course, we breathe air, that's 21% oxygen – a lot of our patients might have needed as much as 100% oxygen, and so supplying adequate oxygen and placing people on machines that are allowed them to get help and support with their breathing. Because when you get very ill with breathing problems, you actually have to work quite hard, your breathing muscles have to work quite hard to maintain blood oxygen levels and the machines reduce that work and make it easier for patients to breathe. A proportion of patients also needed to go on a ventilator formally where we had to put a tube down through their mouth, into their windpipe and sedate them and put them on a on a ventilator which we call invasive ventilation, and now that's a much bigger thing for somebody to experience and we did that when people were much more seriously ill.

And there are things that we do that can make you comfortable on the ventilator that might reduce your chances of survival. So, for example, if we wanted you to be comfortable, we'd very, very deeply sedate you. So that you didn't know what was happening, you didn't have any sort of conscious experience of being stuck in a bed with this big tube down your throat and not really being able to easily move and not really being able to understand what was happening. But we know from research pre-pandemic that if you very deeply sedate patients, they're less likely to survive and have a good outcome. So, we try to keep people as awake as possible while they're on a ventilator, and that's why you find that so many patients have a very, very difficult experience and recollection of their time in intensive care, and for a lot of them, it's very, very frightening. And whilst we try and do lots of things to stop them being afraid and to help them process and understand that experience afterwards, it's very hard to completely eliminate the trauma, the psychological trauma that they've gone through.

 

If a Covid patient is admitted to ICU now today, what does that look like?

If a Covid patient is admitted to ICU now today, what does that look like?

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So, a Covid patient being admitted to ICU today would get that same standard of care that we delivered before the pandemic as an intensive care patient but would benefit from all the learning we've had in terms of special treatments and special drugs that have particular benefits for patients with Covid. Before the pandemic of viral pneumonitis was very, very little extra that we would do apart from support the patient, the ventilators, and so on. There were some antiviral drugs, but they weren't very effective, whereas now we've had five or six treatments that typical ICU patient may benefit from as we treat Covid-19.

Experiences with CPAP (Continuous Positive Air Pressure)

When patients were transferred to the ICU (Intensive Care Unit) it was sometimes difficult for family members at home to understand what treatments, like CPAP their loved ones were receiving. Clinicians were in touch with family members to explain the decisions they were making (see also ‘Contact between family members and clinical staff’).

 

Deborah initially did not understand what CPAP meant but grasped that it meant that her husband did not need mechanical ventilation, the thought of which scared her.

Deborah initially did not understand what CPAP meant but grasped that it meant that her husband did not need mechanical ventilation, the thought of which scared her.

Age at interview: 54
Sex: Female
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And then one Saturday night, I think, as my husband, we hadn’t heard from him all day, and he would normally text. And I was getting a bit worried, and we phoned the ward, and the nurses said that he was struggling a little bit, that his oxygen levels had depleted, and he needed a bit more help. And then that Saturday evening, we got a telephone call from an intensive care doctor, who had reviewed my husband and realised that he needed a lot more help with his breathing, so they wanted to put him onto a CPAP machine. But obviously they had to take him into Intensive Care to be able to administer that, which, I didn’t really know what a CPAP machine was, and I didn’t know why he had to go to Intensive Care. But the doctor said once he’s in Intensive Care, one of the doctors will call you and talk about it, which they did, and explained what the CPAP machine actually was, and how it differed to just being on a normal oxygen mask.

I remember getting a telephone call from an intensive care consultant to say that my husband was struggling, and at the moment they were going to persevere with the CPAP, because the tocilizumab that they’d given him, they could only give him three doses, he seemed to have responded quite well to that. But then obviously after the three doses, all of the issues that he was having then started to resurface again, and on this call with the ICU consultant, he said, at this moment in time, I’m comfortable that your husband is okay, he’s at a point where he doesn’t need a ventilator. And when he said ventilator, I was beside myself. I was like, oh my gosh, you know? Because at this point, it was during the first wave, all I kept on thinking, well if he’s on the CPAP, as long as they don’t mention ventilator, he’s going to be alright, he’s going to be fine.

How well people tolerate CPAP varies. While some of those we interviewed experienced few difficulties being on CPAP, others described it as "awful”, “a nightmare”, “horrendous”, “claustrophobic” and “painful”. The mask needs to be attached tightly to ensure a good seal around the face. Many of those we talked to experienced this as uncomfortable and hard to tolerate. Doctors and nurses were aware and sympathetic about these difficulties, but emphasised the necessity of the mask for their breathing and chances of recovery. Melanie, an intensive care nurse, visited her friend Rhod who was on CPAP in ICU. A pressure ulcer had developed on his nose just under the mask, so she asked the tissue viability team to help dress it and relieve the pain.

 

Brian found the CPAP mask painful and claustrophobic. He kept his CPAP mask as a memory.

Brian found the CPAP mask painful and claustrophobic. He kept his CPAP mask as a memory.

Age at interview: 55
Sex: Male
Age at diagnosis: 55
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The biggest shocker with the CPAP, and I’ve spoken to a lot of people, because everybody is watching TV, they all think they understand Covid, and when you actually start to explain to them the journey and then you say to them, one of the worst parts of Covid is the CPAP, and they go, oh, I didn’t know that.

And so, the funny thing is, is when they first put you on these masks naturally your lungs need to be inflated so you’re on a very high dose of oxygen. It’s a bit akin to putting a hairdryer in your mouth and turning it on, and you can’t say, no, you have to learn to, kind of, breathe with it, it feels like claustrophobia. So, for me anyway, I had to sit there, and you have to, kind of, go into your brain and calm yourself down, because like the old boy, he smashed three of them, he thought they were trying to kill him, he just tried to rip it off. So, it would have been a bit more helpful if they had said, listen, you’ve only just gone on this, you know, as the days go on this oxygen level will slowly come down and you won’t feel this forcing. Because it just… so, I kind of figured that out myself, because as you’re getting better this oxygen is slowly dropping. Yes, that would have been handy, to understand that a bit better.

The other thing about them masks is it gives you…because it’s clamped on, on the bridge of your nose you end up with the biggest sore and they weren't really listening. So, there’s an advert on the TV at the moment, there’s one guy, a black guy that shows he’s got a little bit of tape on his nose but, actually, the tape’s too low down, so I know it’s a bit of an acting thing. Because it needs to be right on the bridge, and it feels like somebody has whacked you in the nose with a bat, it’s really, really sore, because this thing is just clamped on. So, you know, perhaps staff trying to make sure that you’ve got protection barrier tape to try and help that, that would have been handy. Yes, those marks, wretched.

Is that a little bit of a wound you had there, it actually cut [you on the nose]?

Well, it just wore into it, just the pressure. Because this thing is strapped to your head and then you have like a little arm come down and the thing is clamped from the back of your neck. So, I don’t think you could really…you probably could have a battle with it and get it off yourself, but it’s really you need staff to help you click the thing off and get it off. So, that being on your…resting on the bridge of your nose that gives you a really, really sore nose, right on that little bend. I’ve still got my CPAP because they often put them in the bin, so I said to the last guy, do us a favour, can I take that home, and he looked at me, and I said, because I don’t ever want to forget that I’m going to put that in a case.

Did you, did you put it in a case?

I’ve still got it, well, of course, everything is locked down, but I will get it put in a case, so as I get older when you, sort of, moan about days you can look at that in a case, because it’s all shiny new, and I can just think, yes.

You don’t have it anywhere close now, do you?

Do I…sorry?

Do you have it here where you are or is it downstairs? I don’t want to make you climb the stairs.

No, I can get it if you want to see it.

Can we see it, yes.

Yes.  Just bear with me.

Yes, thank you.

No worries. Okay, just bear with me. I’ll just put the big light on. I’m all breathless now.

Oh, I’m sorry.

No, that’s alright.

I’ve never seen one, so…

So… Let me just put my glasses on. There is Velcro at the side, there you go, so that clamps on like that round the back of your head, that obviously goes through there and back on itself. So, the Velcro they do really up tight, it clamps on to the back of your neck, that’s connected to an oxygen machine, and there is actually a little rubber thing that goes around there, so that’s left in the bag. But that’s clamped for 12 hours, just forcing air in, just wretched. Can you see it okay? Yes, there’s different versions of them but that was the last one that came off of me in ICU, so I don’t put that in the bin, I need to keep that. Yes, what a journey that thing.

 

Goutam experienced the CPAP mask as painful and struggled not to take it off.

Goutam experienced the CPAP mask as painful and struggled not to take it off.

Sex: Male
Age at diagnosis: 52
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I’ve never been to ICU the first time I went to ICU I said okay how bad it could be like, you know. I’ll be in another day maybe just an isolation, because that was in my mind it’s because of the Covid, you know, it’s probably it’s more isolation and yeah and they will have a mask because I was struggling in breathing terms, so I’ll have something, oxygen mask or something. So, and probably, that would be, but I still remember that on my head and I remember taking pictures so I can’t be out of sense like when I can’t, took a selfie when that was on my head. And I did say like that’s really one of the very painful experience that was painful like, you know, constantly having that in your whole body like your whole face is covered and you are trying to breathe through that plastic bubble was very painful. And I remember like if they tried to get it off like when I really feel suffocated and try to, and I remember like no, don’t take it like we’re trying to, you know, bring up your oxygen level, don’t try to take it off. So, you just felt like okay I, make yourself like “right I’ll be okay, I’ll be okay I’ll be strong”, but that, that was really, and yeah so like at that time constantly I was like “right okay when are they going to come, how can I go back to see my family”, that was constantly playing up in my mind at the time.

Of those we interviewed many struggled with the CPAP mask, but were conscious of how important it was, and tried to find ways to tolerate it. Some spoke to themselves or focused their thoughts on getting home. Roger tried to surrender to it: “I realised quite quickly that you can’t fight it. You’ve just got to let it do the work for you. Because you’re … almost panicking. Oh, this is horrible, yeah, I can’t get my breath… You relax and let that carry on.”

In contrast to patients who are mechanically ventilated, andare often sedated, patients on CPAP are mostly awake and aware of what was happening around them. Neil said: “When you get the priest come around on a Friday to give the last rites you know that it’s pretty bad. You see, I had the misfortune of seeing a couple of people pass away, which is hard, especially after you’ve been with them for a couple of weeks.”

Zoe similarly recalls witnessing the distress of staff and other patients around her. Whenever another patient died, staff members would draw the curtains around their bed, but Zoe could still hear what was going on. This was traumatising to witness (see also ‘Uncertain survival-Witnessing other patients’ deaths’ and ‘Coming to terms with what happened’). Melanie’s friend Rhod also found it incredibly distressing to witness what was happening in his immediate surroundings, but there was no way for him to get away from it.

 

Zoe was moved from mechanical ventilation onto CPAP. Being on CPAP meant that she was aware of her surroundings, including the deaths of other patients.

Zoe was moved from mechanical ventilation onto CPAP. Being on CPAP meant that she was aware of her surroundings, including the deaths of other patients.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
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So, the next thing that I would remember would be being woken up in ITU to be moved from a ventilator onto CPAP, but it’s still very, quite hazy, my time in ITU. My time in Critical Care is a lot clearer to me, because obviously, well they put me on CPAP obviously it’s to help with your breathing, but you’re aware of the situation. And I think at that time in it was the very worst time to be hospitalised, because it was such a new virus that no one knew anything about. There was a lot of panic, and kind of arguing about PPE, which is understandable. And consultants feeling frustrated because they didn’t, you know, ‘cause patients, I guess for them, as professionals, you get a patient, and you think you’re going to be able to treat them and sort of fix them or some of them. It wasn’t like that, there were just lots of people dying.

So, the ventilation part, I clearly don’t remember, ‘cause I was asleep. Being put on CPAP and seeing kind of the chaos and sometimes seeing death, in the same ward that I was in, was really, really distressing. But at the same time, it wasn’t, I didn’t feel unsafe. I mean, I have a long relationship with, because of my haemophilia. I knew I was in the right place, but it’s just that you’re very aware that there’s a person in the bed opposite you, and then suddenly there isn’t. Or there’s a person in the bed next to you, and suddenly there isn’t. So, I think you kind of get in a thing of thinking, am I next? So, I found that really hard.

I just found it really hard, and really hard to watch because they’d pull the curtains around someone who was clearly struggling, and then if that person didn’t make it, they would pull the curtains round us, and then you know that where that person was going would only be the morgue.

Yeah, I’m sorry, yeah.

So that stays with me a lot.

Yeah. And were you aware at the time that these were also Covid patients?

We were all, everybody in where I was, because at that time in, it literally, especially since the date that I was admitted, things were only getting worse by the day. So, I think at the time when I was in ITU, there were certainly three to four floors of ITU patients, and they were all Covid. So, they was no mixing of Covid patients with other regular ITU patients.

Yeah. Yeah, I can imagine that that’s really distressing, to just see that so close. And you were awake and aware enough to see it?

Yeah. And, you know, the staff really tried, apart from helping me medically, they were really, really kind to me. So, I felt like everybody had a lot of kindness and a lot of empathy, but there’s nothing you can do, I guess, when you’re in a ward where people are constantly dying. And even with breathing equipment on, you form semi-relationships with people, even if it’s just a wave or a nod, or a kind of thumbs up, with other patients that were on CPAP. And then sometimes, just, you know, there was a couple of people that I really remember that I know they didn’t get to go home.

Yeah. That’s really hard.

But I still feel, even now, I’m just so lucky, so like I said, if I cry about it, it’s ‘cause of gratitude, it’s not kind of tears of upset about how I was treated, or how the hospital managed anything. I have nothing but amazing things to say about it. But I also wouldn’t wish it on anyone.

Yeah, of course. It can be those two things at the same time.

Yeah.

Yeah. And you said you vividly remember the other patients in the room?

You just kind of, because the day’s such a funny day, of sort of half routine and half panic, but you definitely get to know faces. One patient who was opposite me, a man who was much older, and there was a lady next to me, they both didn’t make it. And it’s hard because it’s not like in a normal ward, where you’d maybe establish a relationship and you’d talk to anybody, because you can’t. I mean just struggling, just to even answer the consultants’ questions or anything is a struggle. But you do form a bit of a bond, because it’s sort of like you’re all in a war zone together.

 

Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.

Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.

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So, we were several days into, into ICU, and each day his oxygen requirements went up and his oxygen saturations became progressively lower. And I think he was seeing people in the bay around him deteriorating faster than he was and he was seeing patients intubated and seeing patients proned. And at one point, he had a bed by the window but at one point he just felt like he just couldn’t bear seeing the trauma anymore. And he couldn’t…even if he closed his eyes, he could still see it in his mind’s eye, and he felt there was no escape. He couldn’t…to begin with he was able to get out of bed, but then as the days progressed, he became weaker and weaker and wasn’t able to. And he felt like though it was a trauma that he was in and could do nothing about.

So, he spoke to one of the medical consultants and just said is there any way that he could be moved out of that room into a side room. But our, our need for side rooms is really great and we don’t have that many side rooms, and at that point his oxygen requirement was so high that it would have been unsafe to move him anyway.

Decisions about mechanical ventilation

Mechanical ventilation is a more invasive form of life support and requires a patient be intubated (a breathing tube put down the patient's throat). Some people we spoke to remembered being asked whether they agreed to being intubated. Having heard much about ventilation and associated death rates on the news, the idea of being ventilated could be scary. Some like Andrew and Gerry remember agreeing to intubation when their doctors felt it was necessary, although they did not always feel like they had a choice.

 

When the oxygen support could no longer be increased on the CPAP machine, Andrew’s doctors explained why they felt it would be necessary to mechanically ventilate him.

When the oxygen support could no longer be increased on the CPAP machine, Andrew’s doctors explained why they felt it would be necessary to mechanically ventilate him.

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I think, yeah, it was, some of its matters, well, not matter of fact but just, you know, this is the state of affairs it’s that you’re on, you’re maxed out on the CPAP, the oxygen levels are still not in a good place, are not going up. I think this followed a night where it was, where the oxygen level did go down to quite kind of, low levels and then eventually, kind of, stabilised back up again. But it was, that, I think that was a bit of a, certainly quite a scary moment where, you know, you’re, yeah, you’re not able to breathe and they can’t really do too much about you, about it. And people just are turning up the pressure and things, and can’t remember how it got stabilised, but it eventually did. So, there was a bit of that conversation the following day to say, okay, you’re at the maximum and, yeah, if not [inaudible] we, kind of, need to give your body some help, give yourself a rest. I think that was the, captured in those kinds of terms, yeah, it’s, yeah, time to, let’s give you some help.

And then really suggest, like, taking over and put you, put you on the ventilator. Really, really that, that side of things, it wasn’t, it wasn’t much more than that. There was, I think there wasn’t that much dwelling on the fact that there’s, kind of a risk that you’re not going to, you’re not going to wake up. That l, kind of, got more from, yeah, other, kind of, news and social media less from, less from the staff, the NHS staff.

But I guess that’s, you don’t want to, at that point, you’re, kind of, they’re, kind of, thinking well if you’re not going to be on a ventilator then you’re, it’s going to get, you’re going, the prognosis is very poor you need to be, you need to be put on it. And so, they’re trying to give you as much help as much encouragement as possible. So, yeah, I think then that must have been, like, the conversation.

If there was time, people could delay ventilation to arrange some important things first. Peter wrote down all his passwords to give his wife access to his bank accounts, and what things he wanted to be given to specific people in case he would not survive.

Chris did not agree to preventative mechanical ventilation, but agreed to it in case of an emergency. Whilst mechanical ventilation could save the lives of some, others did not survive despite being on full life-support (see ‘End of life visits’). Some, like Emma, witnessed patients dying after they had not agreed to be ventilated, which she found highly distressing (see also ‘Uncertain survival’).

 

Chris argued against mechanical ventilation as a preventive measure but agreed to it in case of an emergency.

Chris argued against mechanical ventilation as a preventive measure but agreed to it in case of an emergency.

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And then you talked about the moment when they felt it would be good to put you on a ventilator.

Yeah.

Yeah. That was clearly an emotional moment.

Yeah. You hear so many stories about people not coming off them. While I was there someone on the ward I saw was ventilated. And the doctors tried to explain to me that it’s better for them to do it under a controlled time than if I suddenly get worse straightaway and they have to do it as an emergency; it’s better to have the time and let them do it properly.

But I just had this horrible fear of being ventilated and, say, you’d been motionless, that I wouldn’t come out of it. And I felt like I didn’t need it. Although they were telling me I did, and they were telling me I was on 100 per cent oxygen. I didn’t feel like I was…probably that I didn’t get any worse, that I’d stayed constant for a couple of days and that I felt I started to get a bit better, that I felt I definitely didn’t want it. But to find out after that they’d phoned my mum and dad to say they were going to do it, and then I argued with the doctors. I ended up at one point I think there was four doctors at the end of my bed all discussing it; and I told two of them that I didn’t want it. And [inaudible] they then explained about how it’s better to do it controlled rather than an emergency; and I said I didn’t want it.

And the doctors said to me, yeah, we respect that, we won’t do it, but they explained why they would want to do it. And they said they’d never want to do it with anyone, obviously, but they’d prefer to do it under their terms rather than emergency terms. But I was adamant that I didn’t need it. And then to get slowly better in two days, to be on 45 per cent oxygen, and then to keep improving, to then two days on the ward to have no oxygen. One of the intensive care doctors that saw me – that was on the end of my bed that day they’d told me about ventilating – came down, he was walking in the ward, and he saw me, and he came in, and he said a rude word, that he couldn’t believe how well I was recovering. From knowing that I was at the point of being ventilated five days before, to the point where I’m able to sit there with no oxygen, or ten per cent oxygen… Yeah, two of the doctors from intensive care were part of it throughout my five days on the ward, all came in to see me just to say they couldn’t believe that how bad I was and how close I was to being incubated, to then be sat there with no oxygen on, it was quite remarkable. And yeah, I’m just so grateful that I was able to pull through and I didn’t actually need it.

And did you agree with the doctors that if you had had to be ventilated as an emergency you would still have wanted it?

If I was…if it had to be done then, yes, it would have been done. But it sounds weird, but the way I felt, I felt I wasn’t getting any worse, I felt I was almost getting better, although my stats weren’t really showing it as though everything was staying the same, I felt like I was starting to get better. So yeah, if the doctors had been adamant and said there was no other choice; but as it turns out they were willing to stick with what I wanted to do. And then to improve how I have, and then get better, they obviously they ended up agreeing with me. And it looks like the right choice. I understand that wouldn’t be the same for everyone, but they agreed that they never want to do it to anyone and if I was adamant, they wouldn’t do it unless it was absolute last sort of [inaudible]. So yeah, it was horrible to even go through, to have them talking about it, to be laid there and know that there’s four doctors at the end of your bed and you can half hear what they’re discussing, that wasn’t particularly nice. But when I was so adamant that I didn’t want it, they did all agree in the end, which was nice.

But then I started to improve, they managed to lower my oxygen to 45, I was then able to sit up in a chair, I was able to get out of bed, sit in a chair, the physio got me a chair, I was able to sit up. Once I’d started sitting up that really helped. A couple of times a day the physio would come and help me get comfortable and help me with my breathing. I’d have to have the CPAP all the time, but the nurses were always there to help me have a drink when I needed one, to give me more medication when I was getting, struggling to breathe. And yeah, every day the physios would come in, help me get up, sit me in the chair, help my breathing.

 

Kate’s husband decided against mechanical ventilation, after which his condition improved whilst he was on CPAP.

Kate’s husband decided against mechanical ventilation, after which his condition improved whilst he was on CPAP.

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So, they were the worst few days, because then he started picking up. He kept on the CPAP, he stayed on the CPAP, he resisted, what I didn’t know at that point, is that he’d declined to be intubated. They went to consent him for it, not that they would have needed that if he’d have crashed or anything, but they said to him about intubating, and he said, I don’t want intubating, I don’t want to be anaesthetised and intubated.  But I think it’s probably ‘cause he’s a stubborn so and so anyway.

So, I think the other thing is, when he came home, I’m jumping a bit, sorry, but when he came home, he was saying how he had watched five people around him die, and they’d all been intubated at that point, and he didn’t want that. Yeah, I firmly believe he’s so bloody minded, quite honestly. Anyway, so that was fine. He then, and this is what I didn’t get, as fast as he had deteriorated to the point where they were considering intubating him, he then started picking up, he then started recovering, even knowing that his lungs were in a terrible condition. So, over the next kind of, I suppose, three days, his oxygen levels, they started turning his oxygen levels down, ‘cause he just wasn’t needing them.

 

Emma witnessed the death of a patient who decided against mechanical ventilation.

Emma witnessed the death of a patient who decided against mechanical ventilation.

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Do you remember any of the patients around you?

Yeah. You couldn’t see them, but you could hear them, so you could hear the things that they were saying, and then you could hear when one passed away. Literally everything, you could hear the nurses with them, and then you could just…you could hear people, even though…so where you are or where I was, there was a patient over that way, and they weren’t…I couldn’t see them. There was nothing wrong with how they were set up, it wasn’t like that, it wasn’t like, oh, it was so over-crowded, everyone was jammed, it wasn’t like that at all. You’re in a hospital, you’re in a like…it’s not even like a ward, it’s not like when you go, you see things and there’s bed, bed, bed like that. It wasn’t like that at all, but I could hear this person, and they were…they didn’t want to be taken to be ventilated, they didn’t, they really didn’t want to be taken.

And in my head, I’m thinking, I don’t blame you, I don’t blame you, I’ve just been through that, I don’t blame you. But then I wanted to turn round to them and go, but it could save you. You’ve got to, you don’t…and ten minutes later, that person was dead. They didn’t make it, and they weren’t old, they weren’t old at all, they were in their forties. Yeah, but they just…and I could hear them, but they wouldn’t go, they just wouldn’t go and be ventilated. They had everything set up, and they were taking them down, and as they went to take them down, they were refusing to go. They literally were, well, I’m not going, and they became a bit…not aggressive as in hitting or throwing things, they became aggressive in their voice, in their tone.

And I just…I was getting so angry with them because I’m like, why aren’t they just taking that patient? Why aren’t they just taking that patient and I don’t know whether…knocking them out, I don’t mean knocking them out, I mean, like sedating or something. They could have saved them, and they didn’t. They just…this person died, and then another lady, she died as well, and she was only young. And that’s when I thought, I’m not going to get out of here. Yeah. So, you do remember them, and you know who’s around you, but you don’t see who’s around you, you don’t…you don’t know who they are, you don’t know anything like that at all, but you know that there is people around you who are really poorly. Yeah.

Although ventilation was feared, family members mostly understood it was needed. One bereaved relative told us their loved one had been intubated after three weeks on CPAP and nasal oxygen, and wondered if he had perhaps had a better chance of survival had he been intubated earlier. He would have perhaps not have been as exhausted as he was before he passed away.

Patient experiences of mechanical ventilation

ICU patients who were sedated to tolerate mechanical ventilation generally did not remember much from their coma. However, many had dreams and hallucinations. It is possible that the experiences of delirium were more prevalent and intense for Covid ICU patients than they are for ICU patients more generally. Admissions were on average longer than for other ICU patients, and were mechanically ventilated for prolonged periods. Covid patients required medications for deeper sedation to enable proning and ‘ventilator synchrony’ (a better match between their breathing pattern and the ventilator) and were on these medications for longer periods. The restriction on hospital visits for infection control meant that no familiar voices could reorient patients back from their hallucinations.

Nahied described how she felt estranged from the world whilst she was in coma, and a sense of anxiety and confusion when she woke up: “At one point, I just forgot what the world looked like, ‘cause I was in a coma, and at one point I really forgot what a road or where my house is... it’s so scary... when I woke up, I had all tubes around me. I didn’t understand what was going on with me.”

Waking up from ventilation can be a distressing and disorientating experience. For Covid patients these experiences were possibly enhanced due the absence of family members.

 

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

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

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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.

 

Emma recalled how doctors tried to wean her off the ventilator and asked her if she wanted to call her family.

Emma recalled how doctors tried to wean her off the ventilator and asked her if she wanted to call her family.

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And then I’ve got certain on and off memories from that, just at different times, and then I woke up another time and they were telling me…they were asking me if I’d had enough. And I was going…I was doing that, I’d really had enough, and they were saying, we’re going to try and take you off the ventilator. Again, nothing was clear, nothing made 100 per cent sense, but it did make sense, if that…again if that makes sense. Nothing was 100 per cent crystal, I didn’t…certain bits of it, if I say it all now, it’s sort of like, how did you know that? I don’t know, I just did, but they took…they wheeled me from one room to another, because I was awake, not as in sitting up awake, but I was awake in the fact that my brain was awake, and they wheeled me from a bed into another room. And I can remember the feeling of it being wheeled into another room, and then they said, we’re going to start taking you off the ventilator, which I can just remember, I was so frustrated. I just wanted to…something didn’t feel right, but I’m not sure what didn’t feel right, and I just wanted them to take me off whatever it was.

And they said, we’re going to start taking you off the ventilator, but you need to open your eyes, and I can remember opening one eye, because I couldn’t open both eyes. And they said, you have to open both eyes, and I just got this strength, and opened up both my eyes and then shut them again. And they said, brilliant, you’ve opened them, and then I don’t understand it fully, but then they started to take me off the ventilator, which just felt like my body was being crushed inwards. And I just kept trying to get the tube out of my mouth, or something out, because it…I just felt like I wasn’t breathing at all. And it just…it went slower and slower and slower, and I felt like my front was touching my back.

It felt like my body was collapsing in, and then when they took…I’m assuming the last point came out, when they took the last thing out of me. I can just remember them saying, welcome back, Emma, and a line of people in front of me, and they were clapping, and I went, thank beep for that, but not in a normal voice. My voice wasn’t normal at all, and it scared me a bit, and then they just laughed. And then I went out, I can remember sort of like coming in and out, a sleepy sort of like…I wouldn’t say unconscious, but coming in and out, and I couldn’t open both my eyes, because one eye, I could open, and I’d have a picture. The next eye I’d open, if I opened them together, I’d have two lots, so it’s as if I’d have one lot of just say for instance somebody standing there, but they’d also be there as well.

So, it was like two lots of vision, they didn’t join, and my mouth was just drooling all the time, and then it was sore, and my throat was very…could only talk like that, it was really painful. They tried…I remember coming round and I had a tube up my nose and I…I don’t know why, but I whipped it out, and I later found it was an NG tube that went into your stomach, and I just pulled and pulled this tube. I don’t know what I thought I was going to achieve, and I don’t know how I thought it was going to help, but for whatever reason, I wanted this tube gone. And then I don’t remember anything again from that point, and then I woke up in another part of ITU, and I can…they said to me, do I want to contact my family.

 

After waking up from ventilation, Geraldine did not know what she was doing in hospital nor how she had gotten there, which scared her.

After waking up from ventilation, Geraldine did not know what she was doing in hospital nor how she had gotten there, which scared her.

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You said you remembered having breakfast and that nobody had told you that you had Covid, so you had no idea why you were there?

Yes, because I didn’t even ask. Now, looking back, I’m thinking to myself now, when I came back home in May…sorry, April, why did I not ask my nurse why…what am I doing in the hospital? What really happened to me? It didn’t occur to me to ask. And then the thing is…the worst thing was I cannot think every time. My memory was bad. And then my…I heard my brother, my youngest brother was talking because I recognised his voice. But then I remembered that is my…then I remembered his name and then I told my nurse. She was in charge of the ward. So, I said oh [interruption]…

You were saying you couldn’t think. What do you mean when you say that?

Memory. I feel like I switched off my memory. I can’t remember things. When the nurse asked me, when she was on the phone with her, I saw her, she’s got a mobile, so I said can I borrow that mobile of yours? I can ring my brothers. And then she said to me do you remember his phone number. And then I had to think a while and then I said I don’t think I know. And then my brother was hearing it and then he said to me…I said to her can I talk to my brother.

So, then I think she asked did he want to speak to me and then he came on the phone to me and then I said to him that time can you ask my neighbour…I’ll give you a shopping list, whatever I can remember at the time. I just mentioned bread, milk, butter I think, I think banana or yoghurt or something. I remember telling a few things, but I couldn’t remember more. I wanted to say just buy me some salad or something, some pasta or something. But anyway, he got…he’d written it down. He said I’m writing it down. I said I can’t even remember my home number. I told him that. I said normally I remember everybody’s phone number.

And I was frightened. It invited some sort of fear come into me, to find that I feel like I’m not here. It’s like it’s not real to me. The feeling, that feeling if you like, it’s like fear getting into me, how is it I can’t remember. If I can remember my daughter, my daughter’s name, I can remember my name; how can I not remember my home number, landline? Mobile; I can’t remember my mobile number. I know it is beginning in something in 0-7-9, but I can’t remember the rest of it. So, it is really frightening to me. It is really alarming me. And I was telling my brother I can’t remember my home number and he said don’t worry, it will all come back to you slowly, when you recover. So, he was more calm than me.

Some, like Victor, felt waking up from ventilation was a positive step towards recovery.

 

Victor experienced the removal of every wire and tube as a positive step in his recovery.

Victor experienced the removal of every wire and tube as a positive step in his recovery.

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Yes, because I saw…where I had come out of the coma and I was gradually being weaned off…it was a great feeling, every time a wire or a pipe was taken out of my body. That was a visual realisation of me getting better and I was like, euphoric, even just like…so I’ve still got all the scars, even being gradually…even the oxygen being gradually reduced, just to see how I would react, and I was reacting well. In my old age, I actually realised these years ago, how much psychology plays a part in everyday life.

You could meet any of my friends, any of my relatives and one thing they would all say about me, especially [neighbour] up the road who is into counselling and mindfulness, she says I’m the most positive person she has ever met. We’ve got something on the wall there that says, everything about my personality, happy, laughter, fun, optimist, optimistic, I’m not grumpy, even when I was on my death bed. I was trying to make the nurses laugh, apart from one nurse, I wanted to fight him. But even in my middle age, well I’m not old yet but I always feel, if you’re positive, there’s more chance of something positive happening. I’ve felt that for a long time and so when all these wires and pipes, I was thinking…always thinking of the next stage and looking forward to the next stage, even though I was probably experiencing unpleasantness at the time. I could see things happening, that were for the good and the next stage was going into a normal ward.

Once I was in the normal ward, I was laying there, I still couldn’t go to the toilet on my own and I still couldn’t look after myself, hygienically and there was this chair, armchair, next to me. That was the next target, to get out of bed and they were encouraging me all the time, and this is one thing I will take to my deathbed, what an achievement it was to actually get out of bed and sit up in a chair.

Family members’ and friends’ experiences around mechanical ventilation

When possible, doctors gave patients time to speak to their loved ones before intubating them. For most people this conversation was a cherished opportunity, but it was often fraught with many uncertainties (see also ‘Uncertain survival’). Sometimes, it turned out to be the last conversation people had with one another.

 

Alisha spoke to her father before he was intubated, which later turned out to be the last time they spoke.

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Alisha spoke to her father before he was intubated, which later turned out to be the last time they spoke.

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But when he did get into the ICU and he was so scared… he was so scared. He called us before he got onto the ventilator and he said, they’re ventilating me now. Me and my mum were just saying oh, it’s okay, don’t worry. We were trying to be all happy and trying to be positive. It’s okay, Dad, people get better when they go on ventilators, that’s just why you need it. You’ll be fine, you’ll be back in a few days. Those few days didn’t come for him. Can you imagine how scared he must have been thinking oh, I’m telling my wife and my child that I’m going on a ventilator now, but this could be the last moment I’ll be seeing the world, or I’ll be seeing anything. It’s just so scary when you think about it. I just can’t imagine the things he was thinking at that time.

He was really sad, because I know when he called us, he said in ten days if I’m not better just take away all the consent, just let me die. It was like what is making my dad say that? Why has he become like that? Why is he saying just take away consent if I’m not better in ten days? It was just scary, and me and my mum never understood why he was saying that. But he did. I don’t have any words to explain that really. But they did end up ventilating him. That was the last conversation I had with my dad. He did tell us I don’t want to die in the hospital, can you please take me out of hospital, and me and my mum just kept saying, don’t worry, you’ll be fine. All we were saying is you’re going to be fine. Because we genuinely did think he would be fine. Now we think about it, and we think… he kept telling us I don’t want to die in hospital, and that’s what we let him do. As a family it affects you in a very big way.

Some family members like Dana and Elizabeth did not get the chance to speak to their loved one before they were ventilated.

Early in the pandemic, in March 2020, Dana had not heard from the hospital for several days, when she received a call from a doctor to tell her her husband had been intubated.

 

Dana received a call from a doctor who told her that her husband had been mechanically ventilated.

Dana received a call from a doctor who told her that her husband had been mechanically ventilated.

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And I was told that somebody would get hold of me at some point. By then it was the fourth day where I still hadn’t heard…nobody from the hospital had called me in those four days. That evening, at around six o’clock, I did get a call from the consultant who had ventilated my husband and he explained that they had tried to do the non-invasive ventilation but that my husband hadn’t tolerated it. And that they had ventilated him at around two in the morning and that they were hoping that everything would settle down and it would just be a few days and that hopefully he would show improvement. And that I guess began the process of spending every day waiting for that call. That was on…he was ventilated on the 30th of March 29/30th of March and, yeah, he remained on a ventilator and in intensive care for 56 days following that.

If their loved one did not survive, not having spoken to them before they were ventilated gained extra significance and added to their loss. Elizabeth’s husband Alexander died on life support: “It’s so hard that I never spoke to him when, after the day he went into hospital that morning. I can’t think what did I say when he left. Maybe, hopefully I can pick you up. We had a couple of texts, he managed to text us, but other than that yeah, it’s just so, so hard” (see also ‘End of life visits’).

Family members found it hard not to be able to visit when their loved ones were so very vulnerable. Some felt helplessness and even jealous of staff who could be at the bedside.

 

Stephanie felt entirely helpless, and jealous of staff who could be with her husband whilst he was ventilated.

Stephanie felt entirely helpless, and jealous of staff who could be with her husband whilst he was ventilated.

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And that made it [audio breaks up] for me and once they, when, as soon as they were going to sedate him to intubate him, they didn’t want any of his personal belongings there really to say they had to send them home. So, I had to go into the hospital and meet the nurse that was looking after him in the reception and she gave me a bag with all his belongings and like pyjamas and things like that and all his valuables. Going to pick those up was, that was really traumatic as well because, and especially when I got them home, you know. And I was sort of like I took his clothes out of the bag and I was thinking, you know, he night never wear these again. And those were thoughts I had and then he sort of put a little note in with the paperwork that he’d written all his passwords out and everything. And he’d put this note in telling me that he loved me and everything and it was, that was really, really emotional yeah. I was really breaking down then and knowing that what the reality could, well likely be, you know.

But the other thing is and again it sounds horrible but when this nurse came down, because it was, it was really, Peter and I do, we’re very close and we spend a lot of our time together so it, it was, I felt like I’d lost my right arm, you know. When he wasn’t there, it felt very, very much alone, in fact I said to my friends I could be, and my daughters even, I could be in a room with a million people and I still felt so alone, really, really did that’s just the way I felt it didn’t make any difference who I was with, I was alone so no-one could have helped me really. But I remember when his nurse came down and met me in reception and she was the nurse looking after him on that day. I was so jealous of her because I was thinking she’s actually getting to spend time with him and she’s with him and can see him and I can’t because I’m not allowed to and it felt, it felt so unfair, you know. And I wanted to sort of like run past her along to intensive care with him and hold his hand, but I knew obviously I couldn’t. And that was quite an overwhelming feeling really, you know, the fact that I just, somebody, another human being was preventing, or several human beings were preventing me form actually being with him. But obviously I knew why so I wouldn’t have changed it but that was really, really difficult, really difficult.

We spoke to a nurse who worked in the ICU where her friend was ill, which meant that she could be with him when he was intubated. For staff, these were particularly challenging moments.

 

Melanie was present when Rhod was intubated. She is grateful to her colleagues in ICU for the way they handled the situation.

Melanie was present when Rhod was intubated. She is grateful to her colleagues in ICU for the way they handled the situation.

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When he became sick that day, when he’d given his, his like his wishes to me and my colleague was in charge of the pod, and they’d come to say they were going to intubate Rhod and he wanted me to be there. And so, I said, of course I will be there. And, and they were really senior anaesthetists like that had been moved from theatres to come and help us with intubation and proning. And our team became massive very short, in a very short space of time. And one of the senior anaesthetists said, I’m going to help with intubation, is that okay. And I’m like, yes of course it’s okay. And the team were around preparing for intubation and, and I just said, you know, Rhod wants me to be there, but I’m not here in a professional capacity, I’m here to be his friend. And so, the best place that I could be, because everything happens at the top end of the bed with intubation, the best place I could be was at the bottom end. And all I did was held his feet, and like he, he knew that I was holding his feet. And like he, so he only ever looked at me; he didn’t look either side, he was just about to look at me holding his feet. Which is like a really bizarre thing to do, you don’t normally hold your friend’s feet, but it was just the right, the only way I could have physical contact with him.

And so, and the team were just magnificent. Like, I know they are because I work with them, but when they’ve got your friend’s life in their hands like I, I totally trusted them, totally knew that they would do their absolute best, even though it’s in difficult circumstances. And we were seeing such horrors and traumas every day, and this was just yet another one. But they…and I shall always remember the nurse in charge of that pod; she was just magnificent. She allowed everyone to get themselves ready, and then she asked them to step aside and let me have just five minutes with him before he was intubated, and that again was so, so special. It’s just those moments of insight really and bravery, because, you know, there was bedlam everywhere. But just to have, to be able to stop the world just for five minutes was amazing. So, I shall always hold that memory.

Moving between support systems

Patients often move between levels of respiratory support. If the nasal cannula or CPAP mask does not do enough to increase or maintain a patient’s oxygen levels, and other interventions, including medication and body positioning, have been tried, doctors may offer patients other, more invasive, respiratory support.

Paula first received oxygen through a nasal cannula, a device that consists of a flexible tube with two open prongs that sit in the nostrils, used to deliver supplementary oxygen. She was then moved onto CPAP. When this did not increase her oxygen levels sufficiently, she was intubated. Her intubation was a particularly difficult one. Laszlo was first moved onto mechanical ventilation and later onto extracorporeal life support (ECMO).

 

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.

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.

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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.

 

Laszlo was moved from CPAP onto a mechanical ventilator and then onto Extra Corporeal Membrane Oxygenation (ECMO).

Laszlo was moved from CPAP onto a mechanical ventilator and then onto Extra Corporeal Membrane Oxygenation (ECMO).

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I had been transferred to intensive care, where they have started a non-invasive treatment. And for approximately two days the doctors tried using this method to increase my oxygenation level and to improve my overall condition. Unfortunately, this didn’t happen, so I felt I felt terrible, to be honest. Probably, also using a mask which blows with a lot of pressure, oxygen, air into your nose and mouth that’s also something which makes you very tired after two days, and I just simply haven’t had the energy even just to sit up in my own bed.

And to be honest, this was the moment, this was the last memory that I had from my own hospital. And what I am going to tell you now is a recollection of my story heard from my colleagues, from my doctors, from my family. So, the very same day, I was put to deep sleep into an induced coma using general anaesthetics and they have referred me to one of the ECMO centres in the UK. ECMO stands for Extra Corporeal Membrane Oxygenation. Literally, that’s the last resort in treatment for covid patients. That’s an equipment literally which we can call artificial lung because you have two very large cannulas introduced either through your groin or through your neck connected to your main blood vessels and those cannulas are connected to a pump and to an oxygenator.

So, the pump is going to extract the blood from your system, oxygenate it and return it through the other cannula. Literally, the meaning of this treatment is to allow the lung to rest so that it can heal. The healing process is much more effective.

So, because there were only a few such equipment’s available in the UK, as you can imagine, there was a very long waiting list and there were only very there were only a lot of strict criteria. And thankfully, during this referral, I was able to tick all the boxes with those criteria and couple of days later, after my admission, I was accepted to be transferred to [city] to [hospital].

However, during those days, while I was intubated, I was connected to a ventilator and I was in an induced coma, my condition furtherly declined. One of the treatment methods of such acute respiratory injuries and distress is proning the patients, so turning on their tummy to open up the airways even more. And I know that my colleagues were very concerned, and the doctors were very concerned that, whenever they have turned me on my back, my saturation levels even with one hundred percent of oxygen were dropping to some insane levels like thirty, forty percent. This is why when they have decided to connect me to the ECMO machine, the lead consultant handling the surgery called my wife and told her, “I’ll be very honest with you. Your husband has only forty percent chances of surviving this procedure because he will not be on his back for a certain amount of time and, because his oxygen levels are dropping significantly when he’s in this position, we are not sure if he is going to make it.” As you can imagine, no one would like to hear such news, so I really admire my wife having the strength and having the ability not to fall apart, not to have a mental breakdown but to but to keep believing, keep hoping, keep praying and waiting for me to go through this and to see me again. This was this was just amazing. So, just to make things probably, how to say, even worse, the team told my wife that, if she would like to call a priest, this would be the time. So probably, this is again, not something that you would like to hear but, clearly, she was she was clinging to every piece of hope, every piece of faith and she remained strong. She knew that this is her only option to remain strong.

So, the surgery was successful. There was an ambulance coming from London to take me there and the prognosis was that very likely because of the damage that my lungs had to suffer due to this infection, it’s very likely that I’m going to spend two, three weeks at least on these life supporting machines and after that, who knows how long in ITU and who knows how long in rehab.

So, the prognosis was that I, that that if I’m going to go through this very hard and difficult process, it’s very likely that I’m going to spend a lot of time in hospital. [um] So when I had arrived to [city], it was twenty ninth of April and as a surprise, actually, even the doctors were unable to give a logical, rational explanation for this but in about five, six days my condition has improved so rapidly that they were able to disconnect me from the ECMO machine first. I think it was fifth of May when they have done a trial disconnection to see if my lungs are going to function well and they are going to process the gas exchange without having an artificial lung without providing oxygen for the blood. But I think the first trial failed but then on sixth of May, it was a successful disconnection from the ECMO, and I have been woken up.

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Patients can also be given a CPAP mask after coming off ventilation. 

Proning and phsyiotherapy

Physiotherapists working in ICUs may reposition patients, or assist them in doing so themselves, to help their breathing. They also help them cough with the aim of clearing their airways. If physiotherapy can be initiated early and makes up a part of the rehabilitation, the return home is likely to be easier (see also Physiotherapy in ICU/Patients’ experiences module).

Covid patients on CPAP and mechanical ventilation were also often ‘proned’, that is turned to lie on their front, to help ease their breathing. Like CPAP, proning can be helpful for patients, but may be difficult to tolerate too. One man felt that he had to change positions too frequently, and that proning was not helping his breathing. Others clearly benefited from it.

 

With the help of the physiotherapist, Chris tried to help his breathing by being in various positions whilst on CPAP.

With the help of the physiotherapist, Chris tried to help his breathing by being in various positions whilst on CPAP.

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Yeah. And then you remember that you mentioned that you were on your front. So, does that mean you remember the proning? That’s what they call that, I think, don’t they?

Yeah. So, the physio probably – [I’ll get this] – after I’d been in there for four days the physio came and told me about proning. So, we tried it for a few hours where I was fully proned, and my breathing wasn’t great, my oxygen level wasn’t as good as it should be. So, then we tried sort of proning at a 45-degree angle, and then fully just on my side. And the best results for the oxygen were when I was on my side. And when I was always laid on my left side; if I laid on my right side my oxygen would drop again; and if I was laid on my front my oxygen massively dropped. So, it was [inaudible] I spent all the time laid on one side.

And, yeah, we had…or I did try every now and again to lay on the front because they said that was the best proning position; but it just didn’t get along, so they said to me don’t bother trying to do it, it’s obviously not going to help, just stick with what you’re comfortable with. And that was just, yeah, laid on my side. The nurses would then support me with some pillows in the back to stop me rolling while I was trying to sleep. And yeah, I just ended up always sleeping on the same side thereafter.

Could you turn yourself or did you require assistance?

I could turn myself. Oh, there was normally a couple of nurses or a couple of physios there, but I was still pretty able, when I needed to move up the bed, I could move myself; if I needed to turn, I could turn myself. I still had certain strength and I knew enough what was happening, like if they needed me to move – because I’m a big guy – I could move myself up the bed; although there was always help there if I needed it.

 

Paul was proned when he was in coma. After he woke up, he was cared for by a dietician and a speech therapist.

Paul was proned when he was in coma. After he woke up, he was cared for by a dietician and a speech therapist.

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So, you’ve said you don’t really remember much from the time you were in a coma. So, let’s go from when you woke up, perhaps. Do you remember what the ward looked like and what other patients were there?

When I was in ICU, I think I was on a ward myself or a room myself with shutters and it was highly sanitised. I was on my back for all this time, other than when I was in a coma, they would roll me over. Must do it for physio or just to get my lungs moving or something. But every time they done that I would get in a distressed state. My oxygen levels would go crazy. When I came out of the coma I was still on my back and all I could see was the ceiling. I remember there was 65 ceiling tiles on the ceiling. Because I had nothing else to do but to look up. I could look to the sides and see the machines, the monitors and things like that. So, there was 65. I remember to this day, 65 ceiling tiles. There was a couple of half ceiling tiles where they went round the air conditioning unit. This is probably a boring thing, but it’s something just to keep me going. I just counted the ceiling tiles and looked at the wee tiles on the machines. I couldn’t go anywhere. I was hooked up to machines.

At one point I had nine pads. Five on my upper body and four on my legs, with the electrical wires that go into them. I don’t know what they do, monitor stuff. I had a catheter in. I had two cannulas, a cannula in each hand. I had a tube going into my neck, the A-line it’s called, and a tube going into my groin, and I had a big sock thing on my left leg to stop me getting blood clots. It was like an air cushion, it tightens up. It just gets the blood flowing. I had that on. So, I couldn’t go anywhere, I was really on my back, not being able to do a great deal. I still couldn’t eat. They were giving me sips of water on a sponge because I had a tracheostomy. If I started to eat all the food and water would go everywhere. But I got a speech therapist I think it was that came as I was getting better and suggested I eat tiny bits of different cakes. There was maybe four or five samples. One was really soft. She goes, how would you feel eating that? I said, well, that would be okay. So went from a really soft sponge to shortbread, which was crunchy, and I was frightened of eating it because I thought it wouldn’t go down my throat because the tracheostomy was still healing, and I got a bit frightened of the speech therapist saying that to me, that I would have to train myself on how to eat the correct food again. But we managed it. I must have, because I’ve put three stone on in weight, so my appetite must be better. But I had the speech therapist and dietitian and all different departments helping me.

 

Brian, who was on CPAP, felt that the proning was done too frequently and that it did not help him.

Brian, who was on CPAP, felt that the proning was done too frequently and that it did not help him.

Age at interview: 55
Sex: Male
Age at diagnosis: 55
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One of the annoying things was, I just remember these nurses keep coming in, physio, all proning, proning, or you need to be proning, you need to turn on your front, on your side, you know, they kept coming in and repeating it. And, if it wasn’t that, it was, would you like to be part of this experiment, would you like to be part of this random thing.  And, you’re thinking, do you know what, it’s the same thing.

So, they come in, about the proning, and I would say, listen, I’ve proned, I’m like a blinking washing machine, I’ve gone around and around and around, I’m on the spin cycle. I know exactly the position for me to achieve my best oxygen and I’m sat in that position right now. And, they go, okay, thank you. All they wanted you to do was sit on your front. Well, not everybody can sit on your front, you can sit on your front a little while, but it is largely uncomfortable, and because your oxygen levels were plummeting with me it wasn’t great. But, yes, they kept on going on, physiotherapists keep going on.

Pete and Wendy continued to prone themselves after they left the hospital.

 

Pete felt that it was important to stay on his front as long as he could. He continued proning after leaving hospital.

Pete felt that it was important to stay on his front as long as he could. He continued proning after leaving hospital.

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Well with proning you need to put your hands above your head or in a position that you feel comfortable with, turn over onto your belly, so that you’re belly-down and then have some pillows to keep your head further up, if you will. And do it for at least, if you can, a couple of hours. It sounds a long time but eventually you get so used to it that you fall asleep. And you might fall asleep and do it more than two hours. But basically, it’s just a question of…

I always sleep on my back; I always have done, like I’m in a coffin, with my feet out of bed because they don’t like the quilt, because of the arthritis and things in my toes and that. I have a bit of neuropathy as well, at the bottom of my feet. But that’s basically the stance that you have to use. And the longer you do it, the better. And so, I felt that it would possibly be important that I try to carry on, because I still wasn’t… I probably did it for another eight weeks while I was at home and then I felt that was enough and went back to normal. And now I’m just living with it, so I’m okay. So yeah, that’s proning.

Wendy also frequently changed her positions after she left hospital. She explained: “Before I went in, I’d heard about that that was a good idea, and I’d seen them do it … on the ICU. So, when I got down on the ward just from a couple of…not for very long, half an hour. But when I got home, I made sure I did it and I think that that might’ve helped a bit as well.”

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