Ann
In April 2020, Ann contracted Covid from a resident in the care home where she worked. She spent 66 days on ICU, including days on a CPAP ventilator. Ann will need oxygen for the rest of her life, due to scarring in her lungs.
Time of interview July 2021
Ann lives with her husband and one of their three adult sons in the West of England. Ethnicity: White British.
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Onset
In April 2020, Ann was working in the residential home for people with dementia where she had been working for over 20 years. Among other things, she was responsible for the personal care of one particular female resident. The organisation and its employees had at this point heard of Covid, and the employees had insisted that they required adequate PPE, but whilst this was being arranged, they worked with what they had. At the same time, a shortage of staff meant that external staff was hired to step in. Looking back, Ann thinks that the resident she caught Covid from may have caught it from one of the external staff.
When all employees were asked to check whether they had Covid, Ann’s test came back positive. Ann husband tested negative. Whilst the resident she caught it from was not too unwell, Ann herself was not as lucky: she developed a cough, a headache, and experienced increasing difficulty to breathe. The shortness of breath worried her most. When Ann called her GP, the GP recommended calling 111, who in turn recommended calling 999. An ambulance came out in 10 minutes and took Ann to hospital.
In hospital
Ann was put on oxygen and underwent a series of scans. She was placed on a ward with other Covid patients. Initially, she felt a bit better. But then she began to feel very hot. She asked for a fan, but the nurses working on the ward were not able to obtain one as they were not allowed to enter the ward where they could get one. Eventually a nurse managed to get a fan, which helped Ann’s breathing.
In the evening, Ann developed bad diarrhoea, which continued for a long time. The night was uncomfortable. Ann does not recall much after this other than being in a chair whilst thinking it was a bed. She must have fallen over and was rushed to ICU.
In intensive care
Ann remembers a doctor telling her that she was on 100% oxygen, and that they could go nowhere after this. They did not want to put her on a ventilator, as they felt that with her underlying health conditions (rheumatic arthritis, fibromyalgia and osteoarthritis, and acquired type2 diabetes, blood clots) she may not wake up again. The clinical team discussed this with Ann.
In the year before her admission, Ann had blood clots in her legs. She initially thought the symptoms she was experiencing were related to her arthritis. She is unsure to what extent the blood clots would have resolved by the time she went into hospital, or whether they were still there and as such may have played into her Covid getting so serious as well. Regardless, it felt as though she was “having one thing after another”.
Another issue emerged when Ann was in hospital: she had had red spots at her lower back, which had become bigger by the time Ann was admitted. It seems that what started as an in-grown hair had led to a blood infection, and could not be removed at that point, as Ann was already so poorly. She was given antibiotics, which helped temporarily.
When the doctors asked Ann whether she would like to see a priest or vicar, she realised how poorly she was. On three occasions, the clinical team called her husband to come to the ward to see Ann, as they felt she was not going to make it; her discharge notes state that her “guarded prognosis” was communicated with the family. Ann believes it is part to her stubbornness that she survived: she just could not imagine leaving her sons and husband behind.
With a CPAP (Continuous Positive Airway Pressure) mask covering her face, and the nurses all gowned up, it was difficult to communicate. Only in the last two out of nine weeks in ICU was Ann able to come off the oxygen mask, and onto a nasal oxygen cannula. The clinical team tried to take her off it because she did not eat enough with it on. Ann feels this was largely due to having lost her sense of taste, which made everything taste like cardboard. She had lost 4 ½ stones. She “lived on jelly”, for it was the only thing that was tolerable. She developed oral thrush and mouth ulcers, and her lips were cracked from the continuous flow of oxygen. This made eating even harder. Eventually, it was a doctor who convinced her she had to eat. From then on, Ann mostly drank the fortified food provided by the hospital.
During this time, Ann was drifting in and out of consciousness. Halfway through May 2020, Ann began to improve. When she developed more of a sense of what was happening around her, she started noticing other patients. There were six other beds in the ward she was in; one of which was occupied by a man who was looking well, ate a lot, walked about and sometimes even spoke to Ann. Another was occupied by a woman who was initially not well, but later there was talk of her going home. Ann was shocked to find that both patients seemed so well yet deteriorated and died, as did three other patients, whilst she was on the ward. This made her very anxious, and aware of how dangerous Covid can be. At the time, people knew very little about Covid and what it could do to people. Observing these deaths traumatised Ann. She was diagnosed with PTSD (Post Traumatic Stress Disorder), and prescribed diazepam for her anxiety, and melatonin for sleeping. Only in the last week before coming home did her anxiety levels come down a bit. But even at home, Ann associated lying down with the possibility of dying, which caused her to panic, and so she slept upright in bed, or in a chair for a long time after coming home from hospital. She was offered support from the clinical psychologist, although they were only doing telephone consultations.
Ann is appreciative of the nurses: “they were fantastic”. At one point when she was on the ward, Ann recounts that she started hallucinating. She called one of the nurses over and told her that the nurses were trying to kill all patients with paracetamol. These delusions seemed very real at the time. Ann now thinks that they were related to the other patients dying.
One doctor in particular stood out to Ann: she was a “force of nature”; she was direct and straight talking and, when needed, told patients what to do (for instance, the told the man in the bed opposite Ann’s to wear his oxygen mask). She came onto the ward dancing when Ann’s oxygen had been lowered to 1 litre, which lifted Ann’s spirits.
Ann had a catheter, which, when she started to recover, gave her extreme pain. The doctors took samples to rule out an infection (cystitis), which came back negative. Ann was given the choice for the catheter to be removed, or for a new one to be put in place. The doctors recommended removing it, so that she could retrain her muscles. Ann was initially concerned about giving the nurses more work to do but was persuaded by the doctor and nurses that that’s what they were there for.
Transferred to another ward in ICU
Ann was then moved to another room on ICU, an individual room on a ward for those patients who were doing better. She received physiotherapy there. When the physiotherapists came, Ann had not walked in 9 weeks. Her legs “were like jelly”. Especially in the initial period, Ann needed support from nurses when walking to the toilet and with showering. During her time in ICU, Ann had three falls – one from a chair on the ward, and another patient called for help, another in the shower when the nurses did not support her fully. In the last two weeks before going home, Ann was able to go to the toilet by herself.
At night she had to use a ventilator as her oxygen levels fluctuated. At 9 weeks, hospital started to feel more “like a prison” to Ann. There was nothing to look at. She went through a period of feeling very low. There was one particular nurse who was very lovely. He told her that she did not realise how much she had fought, and that she was their miracle.
As Ann continued to struggle with going up steps, the staff kept her in hospital until a chair lift was installed in their home. She is grateful for this; when it has been broken, she has felt trapped upstairs, knowing that going back up the steps would take a lot of effort.
When Ann left the ward, all staff clapped her out, lining all the way from the ward to the ambulance. It was a humbling experience. She was taken to her home in a wheelchair. At home, she was helped up the steps to her front door by the ambulance crew and her husband, which was difficult for her son to witness. Ann has since been in the local news, which reported on her discharge after 66 days of hospital.
Coming home
In hospital, Ann was on 2 litres of oxygen. The team had tried to bring this down to 1 litre, but two chest infections affected Ann’s breathing, and she was put back up to 2 litres. 14 months after discharge, her lungs have not improved much and she is still on 2 litres of oxygen (per minute) when resting, which she has been told is likely to remain this way, due to the scarring in her lungs. She was diagnosed with Covid pneumonitis, which led to pulmonary fibrosis. Ann said: “it is what it is”. But Ann’s life has changed drastically now that she will be on oxygen for the rest of her life. She will not be able to be as active as she was previously – and goes out less than she did before her admission, in part because of the risk of re-infection, but also because it is a hassle to gather all the things she needs together before she can go out. Ann feels guilty about her husband having to take up so much of the (house) work, although he is very understanding and tells her to do less, so she will not get out of breath too much. In addition to this, Ann worries about her mother who has had a difficult year. Through these worries, Ann has felt supported by her husband and her sons, even though the two sons who live elsewhere could not visit for a long time due to lockdown and travel restrictions.
There were many other physical changes following discharge. Within two months of coming home, Ann lost about one third of her hair, which affected her greatly. She has found a way to go out nonetheless, by covering her hair with a scarf. She has since learned that this is a symptom of Covid/long Covid. Also, due to the constant oxygen flow, Ann’s skin became very dry, and red patches emerged on her skin. Ann now uses cream for this. Moreover, at one point Ann experienced itching all over her body. She did not immediately contact a doctor because so much had been going on, that Ann was unsure what it was related to. When she did contact her doctor, she told Ann that calling earlier would have been better, as it could have been related to her kidneys. It turned out to be nothing serious, but the incident points to how hard it can be to distinguish between what things need to be tolerated and what things need to be acted on.
When looking back, Ann describes the period in hospital as very traumatic. Ann has had dark days and has been diagnosed with depression. She can no longer work and has lost her independence. At the same time, she feels that she needs to pick herself back up again and get on with it, and she feels lucky to have survived. It bothers her is that her workplace, where she has worked over 20 years and where she contracted Covid while working without adequate PPE, only called once to see how she was. She feels like she has been written off.
Professional support
Ann has had support from the NHS (phone calls following her ICU admission), respiratory nurses (phone and home visit, regarding oxygen) and occupational health (who followed up with phone calls every 3-4 months initially, and then once every 6 months. They answered questions regarding the hair loss, giving Ann a better understanding of what was happening, and why, and they provided useful tips, such as recommending she use post-it notes around the house to deal with forgetfulness, and to not be so hard on oneself. Ann feels that she has received all the information she needed (she found the discharge summary most helpful) and Googled a few extra things when she needed more information. Whilst Ann was offered support groups, this never materialised. Now that it has been well over a year, she feels that a support group would no longer help as she must try to move forward.
Messages to others: Ann feels anger about people not getting their vaccination, as Covid has been so hard for her go through. She wouldn’t wish the virus on anyone and urges people to get jabbed. Covid has been long and traumatic journey for her. She recommends others in a similar situation to her own take each day at a time, to ask the experts for help and information where possible, and be clear about ones needs.
Ann contracted Covid when working in a care home in April 2020.
Ann contracted Covid when working in a care home in April 2020.
It was the beginning of April I was working in a residential home for people with learning disabilities and dementia. I was the senior night care worker. And part of our duties was to do personal care, and I used to do the personal care of this particular lady each morning I was on duty. And I think at that time when Covid was just starting to become more we heard about Covid we had to then have PPE. Unfortunately, we didn’t have all the PPE and the correct PPE at the time, and once people were starting to be asked to go and get checked to see if they had Covid I went with my husband, and he tested negative. It was at a stadium where the healthcare workers were asked to go to.
And mine came back as positive, so I had to get in touch with work and tell them that I’d got Covid, so I wasn’t able to go in. What I actually found out from that was the lady that I did personal care with each morning, she had caught Covid, and we think at the time is that there was a lot of different staff coming in because we had a staff shortage at the time and so other people were coming in. So, we think that the resident had caught Covid from another member of staff outside of our building where I worked. And I unfortunately caught it from the resident. Thankfully she turned out to be okay.
I on the other hand wasn’t so lucky. When I was diagnosed with Covid obviously I had to phone in sick, and it was a few days later that I started to feel unwell. When my breathing started to become a bit difficult, I remember phoning the doctor and saying I’m struggling to breathe and started to get the symptoms like bad headache… And the breathing was the worst part, which worried me more. And she said that she felt I might have the symptoms of Covid started. So, she advised me to ring 111, which I did, told them how I was feeling; they suggested that an ambulance would come out, which it did. I could say they were probably here within ten minutes; they were very quick.
Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.
Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.
From what I’ve been told I was in a chair, but I thought I was on the bed, but I was in the chair, and I just flopped. And then I was rushed to ICU. I can’t remember much in the beginning other than the doctors had put me on a hundred per cent of oxygen, and I was sort of drifting in and out. And I recall the doctor coming to the bed and saying, you’re on a hundred per cent oxygen, there isn’t anywhere else we can go with this. He said they didn’t want to sedate me, you know, when you’re sort of put into an unconscious state, because of my other underlying health issues [blood clotting], and they said I wouldn’t survive it.
Ann’s husband came to ICU for three end-of-life visits when her chances of survival were slim.
Ann’s husband came to ICU for three end-of-life visits when her chances of survival were slim.
But when I was in hospital, when the doctor said that there wasn’t anything they could do more because I was on a hundred per cent oxygen, did I want to speak to a vicar or a priest or whatever you call them. And I said, no, what for? So, it sort of took me…And that at that point, when he said that, I realised then how poorly I was, and I was battling for my life. My husband was called in three times during the period of nine weeks and a little bit I was in hospital for – three times – because they felt that I was going downhill and they sort of had said to my husband, you need to have a conversation with your wife. And he told me that he turned round and said, no way is she going to die, he said, she’s too stubborn. And the thought of leaving my boys and my husband, I just thought, I can’t do it, I cannot leave them. And I think I put down my recovery partly due to my stubbornness. And it’s only from being told by the nurses, and even the cleaning lady who used to go and clean the wards, that they all thought that there was no way I was going to recover.
When the nurse told her the patients across from Ann died because of underlying health conditions, she worried more, because she too had pre-existing health issues. Ann was later diagnosed with PTSD.
When the nurse told her the patients across from Ann died because of underlying health conditions, she worried more, because she too had pre-existing health issues. Ann was later diagnosed with PTSD.
I mean at the time when you catch Covid, aren’t you, I didn’t think about my other underlying health issues. But when the nurse said, when the two people died opposite me… I mean I know the one in the middle, that he was quite poorly, and old as well, it sort of…when she said that…because I said, oh, why did they die? I said, because I thought they were going home. She says, well, they had other underlying health issues. And it sort of scared me more because I knew I had other underlying health issues. And I thought, well, if Covid doesn’t finish me off it’s probably going to be one of my other underlying issues.
More so with the clots in my lungs, I thought, more so, rather than arthritis; because I don’t know anybody who’s died of arthritis, but clots in the lungs can be quite dangerous, especially if they travel to your heart. So that was scary. But Covid, because it was so new, and because nobody understood what Covid really was, and the things that it could do to you, I didn’t really think about it that much, other than that I was very, very poorly. But of course, when it, you know, all the things I was going through, and they said it was related to Covid, and it just made me more aware of how dangerous it is.
And in the time I was there, the five people that were on that ward all died.
Oh, gosh.
I never suffered at all with anxiety but seeing these people – I mean obviously I didn’t see them actually die – but the machines that were brought in, and within just days of them seeming to be okay they just went downhill straightaway. They were put on monitors, oxygen machines, everything; but unfortunately… Now whether they had other underlying health issues maybe, but they just went down very, very quickly. And I saw each one of them go; because you know when someone has died because the nurses and the doctors, they pull the curtain around, they pull your curtain around. And then you know that the bodies are being taken out.
And that happened to all the five of them that was on that ward. And so, I was the only one left on that ward. And my anxiety levels went through the roof. The doctor diagnosed me with post-traumatic stress syndrome because I could not, whichever way they talked and tried to distract me and everything, my anxiety would not come down. And this went on for, I think it was the last week before coming home is when my anxiety levels started to get a bit better; they weren’t completely gone. But it was only afterwards when I came out of hospital, I thought why was I going through this, because I’d never experienced anything like it before.
Ann remembered one particular doctor who made a difference to her time in ICU.
Ann remembered one particular doctor who made a difference to her time in ICU.
I actually liked her, because she was straight talking, and she didn’t pussyfoot around what she was saying to you. And I like that, I like people to be up front and direct. So yes, so she became my favourite doctor. And I remember when she used to look in on the ward, come in on me, and she would sort of say, hmm, well, you know, your oxygen levels aren’t great, we need to get them at such and such a point; and I used to say to her, but when will we get to that point? She said, you just have to be patient. Well, God, I remember getting frustrated, but I was never frustrated at her, because she was just doing her job.
And I remember the one day when they got me down to a level one on oxygen. And she came in dancing. And she danced around the room and saying that that’s great, that’s brilliant. But of course, you know, things have changed since then. And I remember having to go to the hospital and see her six months after I came out of hospital, I went to the hospital and saw her. And yeah, she was still the same. And she was saying, oh, you know, everyone still talks about you, and you’ve done well, but you know… She didn’t say at the time that I was going to be on oxygen for life. Because I don’t think anybody knew at that point how long, and how much affect…the Covid had on people, and the symptoms of things, that they developed after leaving hospital.
Ann had several falls on the ward when she had not yet gained enough strength to walk by herself.
Ann had several falls on the ward when she had not yet gained enough strength to walk by herself.
One day I was sitting in the chair, and because I was constantly falling asleep – it was like I just couldn’t keep my eyes open most of the time – and I recall when that lady was alive opposite…oh, I can’t even remember at that point, but I just heard this shouting, nurse, nurse. And what had happened is that I was sitting in the chair, and I’d dozed off. And I went forward and fell out of the chair onto the floor. Probably, thinking about it now, they probably should have strapped me in, but I just went forward and went on the floor. I don’t recall anything until all the nurses were rushed over trying to get me up off the floor. So yes, that was one of the experiences of me having a fall. I had a fall in the shower as well. The nurses didn’t quite hold onto me, so I sort of slithered down the wall on the floor. And yeah, so there was about three incidents of me having fallen. Because it was like I had no control over my body, and when the physiotherapists started coming in, I remember it was…sorry, I forget words…it was…
Take your time. And if you need to catch your breath that’s also fine.
Okay. It was when I had to stand up from the chair, because my legs were like jelly, so of course trying that, and they gave me the frame and everything, and I’ve had to very, very slowly start trying to walk. But it really was like a toddler standing up and trying to take their first steps, because obviously for nine weeks I hadn’t walked, or even stood up, because I was in the bed or the chair for all that time.
Ann felt very anxious when lying down in bed on the ward and at home, because she associated it with death. For a while, she slept only in a chair.
Ann felt very anxious when lying down in bed on the ward and at home, because she associated it with death. For a while, she slept only in a chair.
And I realised when I came home, I think the reason why I had such anxiety on the bed, and there were many times during my stay I wouldn’t get into bed, I slept in the chair. And I think my fear was that if I get into bed I’m going to die, like the other people did. At the time I didn’t know, but I did have a very, very big issue with lying down, in all the time when I was able to speak to the nurses, they had to put my bed up straightaway because I couldn’t lie flat, because that’s when I started to really panic. So yes, for most of the duration when I was compos mentis I slept sitting up or slept sitting in the chair. And when they had to help me with bathing, they put me on the bed and they said, we’re going to lower you down. And I remember saying, no, no, no, no, up, up; and I kept saying, up, up, up, up. And they said hold on, we’re being as quick as we can.
After nine weeks, the hospital “started to feel a bit like a prison” to Ann. She found being clapped out was very humbling.
After nine weeks, the hospital “started to feel a bit like a prison” to Ann. She found being clapped out was very humbling.
But at nine weeks I was saying to the doctor, please, I want to go home. Because it started to feel a bit like a prison then, because there was nothing to look at, there was nothing I could do, I couldn’t get up and walk about, because I just didn’t have the energy or the capability of walking very far with the oxygen. Of course, as you walk around with oxygen it uses it up quite significantly and quite fast.
So yeah, so I sort of I went through a period where I was feeling very down and getting upset. And the nurses were very, very good. There was one particular nurse, it was a male nurse, and you always knew when he came on shift because he’d always come in whistling; and he was lovely, really, genuinely cared about what you were thinking, what you were going through and, you know; and many times he used to say, Ann, you know, you don’t realise how much you have fought this, he said, you were just so poorly. He said, you’re our walking miracle, which was very nice of him.
In actual fact he did the video of me when I left, and oh, it was very…it was very humbling, because there was nurses, there was doctors, there was the cleaning staff, all lining from the door coming out to where I was going to go into the ambulance to come home. And they were all there clapping, and it was just lovely.
I’ve got the video of that, and of course I was also in the local newspaper – and I’ve got that – about me being in hospital, and the time I was in, and how I sort of recovered, and sort of praising the staff and that. And yes, that was lovely. Still got them now. But yes, I mean, I wouldn’t wish it on anybody. And I feel a bit angry and sad that some people still think Covid is a bit of a myth and that they won’t have the vaccination. And I just think, if I could stand on a platform and say to everybody what I went through, and that it really isn’t worth risking your life to not be jabbed. Because it really is…I wouldn’t wish it on anybody what I went through. It was a very scary and a very hard thing to go through.
Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.
Ann lost about a third of her hair within two months after discharge and itching skin, possibly related to her kidney function. She bought a scarf to cover her head.
I just wanted to say as well – or I forgot to say – is that when I came out of hospital, within two months of coming out, which I found very strange, I lost about a third of my hair, which was, to me, more devastating. Because it’s such a visual thing, your face, isn’t it? So, part of me wouldn’t go out, and then when we did go out, I ordered these scarves that you wear when, you know, more, like, when cancer patients wear scarves if they’ve lost all their hair. But my hair was so thin, and it came out so dramatically, I thought it would never come back again; but thankfully it has. And now I’ve been told that’s all part of Covid as well. Which I found strange that it didn’t happen in the hospital, it wasn’t until I came home, a couple of months after.
Yeah, so there was that. And then I had a really bad, for a couple of days, of itching all over my body, I was constantly scratching myself. When I phoned the doctor, she sort of told me off a little bit, she said because that could be connected to my kidneys. And I said, well, obviously I didn’t know that; because you don’t, you just think all these things, you just think, oh, God, is there another…something else with Covid that’s affecting me at the moment? But thankfully I’ve only had little bouts of scratching since then. But it was to the point where the itching was so bad, I actually bled; and I have got some scars on my legs where the itching was so bad that I really scratched myself quite bad.
Ann advised that people get as much information and support as they can.
Ann advised that people get as much information and support as they can.
Is there anything you would like to tell other people about intensive care and Covid, now that you’ve been through it all? As you’re now an expert.
Oh, I don’t think so. Well, my main thing is, is if you haven’t been jabbed, please get jabbed, it’s the only way that really is going to save your life. That Covid experience for me, I don’t know how it affects other people, but for me it was long, it was traumatic, it was on the pinnacle of me dying, a few times. I would say, probably, never give up, keep, you know, trying to go forward as best as you can, but take one day at a time. Because every day that’s…if you can get through one day you can get through a next, but you’ve got to take it on a daily basis. Because with the long Covid is that you can develop all sorts of different things, and you have to try and battle them one at a time as best as you can. And always, if you’re never sure, just ask the experts, phone your doctor, get as much information as you can and tell them clearly what you’re going through, it doesn’t matter if it seems silly. I mean for me when I was experiencing different things that I didn’t say at the time when I probably should have so the doctor could make a better diagnosis of what I was experiencing. Because to me everything I’ve experienced since I just put down to the Covid and that’s what people go through; when really, I probably should have asked the doctors or the nurses, or whatever.