A-Z

Zoe

Age at interview: 46
Age at diagnosis: 45
Brief Outline:

Zoe spent 14 days on ICU and 10 days on the High Dependency ward in the spring of 2020. She was ventilated and later on CPAP (Continuous Positive Airway Pressure). She found it particularly painful to be witness to what happened around her. Zoe felt truly supported by her GP in her recovery. Interviewed for the study in February 2021.

Background:

Zoe and her husband have 4 sons (aged 17, 22, 24, 26). Zoe works in retail. White British.

More about me...

On 20th March 2020, Zoe did a regular shift at her job. She works in retail; the store is right next to the hospital she would later be admitted to. At the time of the interview, 11 months have passed since her discharge. To Zoe, the experience feels disjointed. She has lived with haemophilia for a long time now, but she had never thought about own mortality; it is not something she prepared herself for.

In March 2020 Zoe had heard about Covid but was initially not concerned. One evening, she had dinner with her husband. Everything felt normal. Zoe got up that night and had a tight chest, but nothing else. But then she collapsed in the bathroom. She does not remember anything else, except that she woke up in resus, the area in the A&E department for people who need life-saving treatment immediately.

Resus was quite chaotic, Zoe recalls. Doctors were doing many tests. Staff informed her that temperature was high and that organs were shutting down; they felt that they had no choice but to admit her to ICU. The scary thing, Zoe said, is that she does not remember, and that she had not felt really ill at home. Zoe recalls that the staff were really kind to her.

Zoe was intubated. The next thing she remembers is a few days later, when she was being woken up, and switched from the ventilator onto CPAP (Continuous Positive Airway Pressure). The CPAP mask helped with her breathing, but she was aware of everything around her. Every other patient was a Covid patient. When Zoe had been admitted case numbers in the UK were rising. Being on CPAP in March 2020 meant being witness to staff frustration and arguments over PPE, and the chaos and death of other patients. “That stays with me” Zoe said. She herself did not feel unsafe (partly due to her longstanding relationship with hospital for her haemophilia) but found it very distressing to watch. “You do form a bit of a bond … because you are all in a warzone together”. She remembers certain patients, who she formed relationships with, but not all of them got to go home. About her time on CPAP Zoe says, “I had surrendered, given up”. When Zoe was woken up from the coma, she had a 50/50 chance of going home – and she felt for a long time that she wasn’t going home. Only when moved to ward, did she feel like she was maybe going to survive.

Zoe and her husband have four grown-up sons. She did not want her boys to know that she was in ICU, so she told them she was in critical care. If they Googled and looked, it was obvious that 50% of patients did not make it. She only told them when she got home.

Zoe was moved onto the High Dependency Unit (HDU), where there were still many sick people around her. Some people ended up back in ICU. Zoe was monitored very closely every 3 hours and saw lots of consultants. She saw that this work at this particular time was hard for them too, as there was nothing that could really help her or any other patient.

In ICU Zoe developed a clot in her lung; she was taken down twice for an MRI. Once, a porter would not get in lift with her unaccompanied, insisting on a nurse coming with them in case something would happen to her in the lift.

Zoe felt more able to exchange a few words with patients around her when she was in the HDU. She found out the name of one woman, who sadly did not make it. At this point Zoe was still aware that her own life was on a knife’s edge. Probably only during the last 2-3 days, when staff talked about discharge, did she feel more secure about being on the mend.

“You become a bit obsessed with the numbers…. a number watcher”, Zoe said. She learned about oxygen levels: it needed to be 93, 94 before staff would consider letting a patient go home. Zoe knows what her oxygen levels were at various points in her illness. In last days the oxygen levels became lower range of acceptable. In total, Zoe spent 3 weeks and 5 days in hospital.

Zoe speaks of the things one takes for granted: smelling fresh air, seeing the dog. She described the hospital as an “alien environment” although she is so familiar with it.

Zoe tells me that “having Covid is like drowning and being strangled at the same time” without anybody really being able to do anything to ease that. It felt like that when on she was on CPAP, in the HDU, all the way up to 2 days before discharge. And even then breathing was ‘terrible’, but she felt that maybe it could possibly be managed. Zoe was desperate to get home from hospital: to not have to see another person being wheeled out; desperate to be somewhere quiet; desperate to see her family and her dog…. “Getting home meant you had sort of made it”.

But getting home was not the big reunion she had thought it would be; everybody seemed to be petrified and cautious around her. She insisted on sleeping in her own bed, even though it meant having to climb more stairs.

Zoe speaks of a “Covid legacy”: she has scarring from Covid pneumonia in both of lungs. This means that there are things she cannot do. She has to pace herself. It frustrates her; she has had to adapt her life and do things more slowly than before. At the time of the interview, she was still breathless. Seeing something about Covid on television initially made her very, very tearful.

The GP, who has known her since she was 11, insisted she had an assessment for post-traumatic stress disorder (PTSD). It was hard for her to understand that she needed help, after always feeling that she could manage everything by herself, but she did. It look 5 months before she was able to accompany her mother to her hospital appointments. Zoe felt extremely anxious when she was even just near the hospital.

As time went on Zoe got less tough on herself. Talking therapy helped – it allowed her to vent, put things into practice. After 10 weeks she opted out because she wanted to navigate the feeling without any help. She knows that she can tap into help when she needs to. She has also declined antidepressants because she wanted clarity, not dampened-down feelings. After opting out of talking therapy there was a few months gap whilst she was still on furlough. Getting back to work has helped too. At work she sees staff from the hospital who took care of her. She said: “When staff see me cry, it is a bit of upset and also gratitude – because they are the people that saved me”.

 

Zoe woke up in resus after experiencing a tightness in her chest earlier that night.

Zoe woke up in resus after experiencing a tightness in her chest earlier that night.

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I didn’t have any symptoms apart from, I think I explained to you that when I went just to the loo, in the middle of the night, I had a little bit of tightness in my chest, which was a bit unusual for me, but not anything that I thought, oh, like, anything dramatic. So, the fact that I would find myself waking up in Resus was just such a shock. I just, I didn’t, all the things they tell you to look out for, I know my temperature was high, I think I told you that already, from the notes the paramedics had, but if you’d asked me on that day if I’d felt okay, I would have definitely told you, yes, I felt fine. So, when they say, kind of, you know, continuous cough, high temperature, you know, all the things that they tell you to look out for, I didn’t feel like any of those applied to me, apart from that little bit of tightness to my chest.

 

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.

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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.

 

After coming home from hospital, Zoe did not feel like herself. She appreciates the help she got from her GP, who felt she had PTSD.

After coming home from hospital, Zoe did not feel like herself. She appreciates the help she got from her GP, who felt she had PTSD.

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My GP was so supportive. The medical tests and the post-Covid team were great, but I feel like, after discharge from hospital, I honestly think in so many ways, my GP sort of saved my life. ‘Cause I think I was in such a dark place when I came home. And the hospital were extremely supportive, but I think, probably because she’s known me the longest and knows me best, she was the one that picked up on the fact that I really was not the person I was when I went into. So, I think GPs probably don’t get enough credit during this Covid journey, because they’re not, you know, the people with the masks on, putting tubes down you and injecting you and stuff, they’re sitting in an office, dealing with patients. But I don’t think I would have got through those first few months without my GP. Because I just had this huge sense of kind of hopelessness, when I came home. Grateful to be alive, but I just felt, I think I just felt really hopeless and everything. You kind of, it’s sort of like a, everyone wants you to be like, you’ve survived it, you did it. I didn’t feel like that at all. I know I got home, and I know I was alive and obviously I know I survived, but I didn’t have this feeling, like, I’m a survivor. I just felt like, I’d got back from war, and I didn’t know how to adjust to civilian life.

I’ve got the most amazing GP who knew my whole story and what happened to me in hospital. She was on the phone to me probably every day, for the first two weeks when I came home, just checking in with me. I’ve had the same GP since I was 11, and she was the person that said, I really think you have PTSD, I really want you to have an assessment with a psychologist, ‘cause I really think there’s things that we can do to help you, ‘cause I think you’re really in a bad place, so I think…I have experience of mental health, and I thought I had a good understanding of it, but I’ve never experienced it myself as a person. So, I think for someone that’s kind of gone through life always thinking, even with my haemophilia diagnosis it’s kind of like, fine, I’m like it's good, I’ve got this, I’ve always felt like I can manage everything, whether it’s my four boys, whether it’s my work. I think it was quite hard to understand that this was just something that I couldn’t navigate myself and that I needed help.

 

Zoe was blown away by the kindness that she encountered following her hospital admission.

Zoe was blown away by the kindness that she encountered following her hospital admission.

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And I think it’s also shown me, people have been so kind to me, and that’s really kind of blown me away. I mean, people are kind anyway, I think. I live in a nice neighbourhood, the NHS and have amazing staff. I have nice friends and family, and a good support system, but I think people’s kindness, just with strangers, my bin men are always asking how I’m doing, you know, the people at the paper shop, the dry cleaners, people have really blown me away with their kindness.

Was this specifically in relation to your Covid, that they’ve asked, yeah?

Aha. I mean I think I’ve always had like a good connection with people, neighbours and people in my neighbourhood anyway, but I think the fact that people always remember, they ask how I’m doing, how I am, yeah, it really has, really, really touched me. I mean, sometimes it makes you cry, so it touches you in that way, where you end up crying, and you’re just trying to pick up your coat from the dry cleaners. But it’s kind of knowing that people care, and people that you don’t necessarily have a very personal connection with them, but they still take the time out to ask how you are, and how is your progress, and how are you doing, and…? I mean, people would often ask me quite detailed questions about what it was like to be in ITU, which I found quite difficult initially to talk about, but I think they just, they asked in a caring way, not necessarily in an – you know - invasive way. And sometimes we had cards dropped through the door, and I didn’t know the name of the person. I thought, my God, I’m going not see them, and I’m not even going to say like, thanks for the card, ‘cause I don’t know who it was anyway that had dropped the card through. So, you know, people have been so kind.

 

Zoe felt guilty about what her admission has meant for her family, that she felt had been changed by Covid forever.

Zoe felt guilty about what her admission has meant for her family, that she felt had been changed by Covid forever.

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You mentioned before that you feel guilty that this affects the whole family, is that something…?

Yeah, I think it’s definitely something that’s stayed with me. I feel like, without meaning, I kind of dragged them on a horrible journey, and I know that I didn’t do anything to cause it, but I still feel like they were massively affected by it. But, I mean, I think a year on, everybody has a better understanding and they’ve been very understanding with me. But I definitely think that it’s touched our family in a way that’s sort of changed it forever. But not any more so than, you know, if my husband was suddenly diagnosed with something, or something else happened, but I think Covid was a different kind of journey, because it was dramatic, because it was in the press so much, because it was so unknown, I guess it’s different than something like maybe a cancer journey or another type of journey where maybe the family would have had support and understood more. Even the people that were looking after me didn’t understand. So, I think it was just a very unknown journey, but I definitely feel guilty, but sometimes I feel like it’s kind of a wasted emotion, because I can’t change anything about what happened.

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