Mark
Mark was diagnosed with Covid in January 2021 after coughed up blood and fainting. He spent 35 days in ICU on a ventilator and 31 days on the ward and in a rehabilitation centre. His daughter moved in with him temporarily after discharge from rehab. Interviewed for the study August 2021.
Mark is a self-employed financial advisor and family carer to his elderly mother with dementia. He is single and has 2 adult children (son & daughter). Ethnicity: Black British (Afro Caribbean).
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Onset and diagnosis
One day in mid-January 2021, Mark suddenly fainted. A couple of days later, he woke up coughing blood, and he was incredibly thirsty. Mark did not think he could be ill with Covid as none of his symptoms were those given to the public by UK public health messaging at the time.
Mark lives alone, but he asked his partner to stay with him just to be sure. When she felt that he did not look well, she called an ambulance. The paramedics had a look at him and knew it was Covid from the way Mark presented and took him to hospital. As Mark’s local hospital had no capacity to take additional patients, Mark was taken to a large teaching hospital nearby. A blood test confirmed his Covid diagnosis. Mark later found out that it was likely to be the Kent strain (later known as the Beta variant), and that a few other family members were ill with it as well.
In the intensive care Unit
Mark was admitted to the ICU immediately and was placed on a CPAP (Continuous Positive Airway Pressure) mask. The clinical team discussed mechanical ventilation with him. As Mark had been reading that this was frequently accompanied by a DNACPR order*, he asked for this to be removed before signing, and communicated his decision with his family. He was then intubated. Mark later found out from his daughter that whilst he was intubated, the DNACPR order was put back on. His daughter explained that he had consented to ventilation only because it was removed, and that these were his wishes – and so the order was removed once again. In ICU, Mark had “strange dreams”. They were not particularly distressing to him, but they seemed very vivid, and he cannot distinguish them from what is real to this day.
Communication between clinicians and Mark’s relatives
Communication with health care staff was taken on by Mark’s daughter. Mark now realises what kind of pressure she would have been under, doing this in addition to studying for her degree and making adjustments to the house for his discharge.
Waking up from the coma
Mark woke up from the medically induced coma after 3 weeks. He also had a tracheostomy in the meantime. Mark was initially disorientated about time; the ward was constantly noisy, it had three different clocks telling the time in different time zones, and no windows to the outside world, which meant one could not see whether it was day or night.
Within 18 hours of waking up he could FaceTime with family, with support from staff. As he could not yet talk, he signed and waved. Mark really appreciated this, especially as communicating through his own mobile phone proved impossible due to his failing hand-eye coordination and what he called ‘fat fingers’. It took 3 days before he could use his own phone.
Staff
The staff looking after him came from all over the UK and were not necessarily trained in intensive care medicine. Mark was particularly impressed that he was helped with everyday tasks by a surgeon. Sometimes Mark felt that he had to “learn to survive” until the end of somebody’s shift. For instance, he remembers explicitly one moment in which he was choking whilst a staff member – presumably unsure what to do – looked at him for a while before springing into action. Mark recalls that some staff members seemed to have easy solutions for something he had endured for days under the supervision of other staff members (e.g., coughing off the ventilator tube, which one particular nurse knew how to connect in a way that would prevent this from happening). Mark feels that those who have had experience with Covid themselves showed total compassion because they understood what he needed.
Whilst Mark was awake in ICU, he was trying to tick the boxes in order to get discharged from the unit.
The General Ward
When he did get discharged to the ward, he saw that some patients did not cooperate the doctors. When he was moved back to his local hospital after one day, he told them that they could get there if they only worked with the doctors.
He spent another 14 days on the ward in his local hospital. Whilst there, he could barely move and speak, a condition that he almost accepted. The equipment in the local hospital seemed older and noisier. Sleeping was extremely difficult because every three hours clinical staff came to do observations. The physios were very persuasive. When Mark got up, his head would be whizzing, something that gave him more empathy when thinking about his parents whom he has provided care for over the years. Because Mark normally takes care of his elderly mother with dementia, he asked whether instead of being discharged home he could be transferred to rehab. This would help him to recover the level of fitness he needed to care for his mother. He was transferred to a rehab centre after 3-4 additional days on the ward, as he had to wait for a bed to free up.
Rehab
Rehab was not what Roger had expected. Instead of being the intensive exercising regime he had hoped for, where he would be pushed in his recovery, Mark was asked to do a maximum of 10 minutes of exercise at a time and otherwise left to his own devices. There was one particular nurse who worked weekends, who pushed him further than others did – which is how he made progress. Another nurse there said he should not push himself into being over-tired, but Mark felt he never got to this point. Nevertheless, he remembered her advice not to push himself too far, which became useful when he walked a bit further every day and every week after coming home. Whilst in rehab, Mark received his first dose of the Covid vaccine.
Coming home
After a total of 17 days, Mark came home. His daughter had reconfigured his bedroom and she stayed with him for 3 weeks to support him. Their relationship changed for the better. Everyday life was much more fragmented and difficult than before admission: for instance, Mark describes that he needed to do the dishes in four stages. His two brothers supported him with shopping and accompanying him on walks.
Support
Mark received one week rehab from home. He did the rest by himself, teaching himself to walk, a little bit further every day. At first, he was able to walk inside with one crutch and outside, where the pavement was not entirely flat, with two crutches, and later without crutches inside, and one outside.
Mark has had a 12-week follow-up appointment with the ICU, although he had initially missed it because it was buried in the discharge notes. A more up to date chest x-ray was recommended and blood test. During a sleep clinic follow up the consultant commented that he thought Mark “would have been a nightmare on the ventilator” due to his sleep apnoea. He has since taken up the counselling that he was recommended. When asked what kind of support he would still like to receive, there is nothing that comes to mind. Mark’s mother now has more carers, but this took a lot of work. Mark is slowly taking over some care tasks that were temporarily done by his brothers.
Information
Mark has received a lot of leaflets. But by the time he got them, he ‘had already lived it’. The leaflets would have been more helpful had they been given to him closer to discharge. Generally, Mark found his own information online, and by talking to friends.
Recovery
Mark continues to struggle with backpain, anaemia, clogged sinuses, and changes to his voice and tonality. He has still not regained the strength he had before admission. Mark feels that while those who know him may understand this, but if somebody does not know him, they may wonder why he “does not just pick something up”. He believes he may have long Covid but finding out whether this is so, is difficult as all health services seem to be saying that he should return in a couple of months if his symptoms persist. He has always had a strong general constitution. He describes how his experience with Covid has made him understand that apnoea may have predisposed him to Covid, and that he needs to take apnoea seriously as a condition. He now has a CPAP (Continuous Positive Airway Pressure) machine at home. In addition to biomedical support, Mark believes in natural healing, which sits comfortably alongside conventional medicine.
Mark is now kinder to himself and pushing himself less. If he has to skip a day’s, he does – whereas before, he never would have done so. He is a bit more direct, and ‘the volume has been turned down on some people’.
For his work, Mark arranges wills and power of attorney for people. He has picked some of this back up after his hospital admission with Covid, although he is not yet “office fit”. Because he is self-employed, he can arrange the time around his energy levels.
Messages for others
For those in a similar situation he points to that there is a great deal of help available. “Take a leap of faith” he says. Mark suggests that as an improvement, having a mirror when the tracheostomy is inserted, may help patients to understand where it has gone: “You just see a hand coming towards you with a tube, and then it’s gone.”
*DNACPR stands for ‘Do Not Attempt Cardiopulmonary Resuscitation’. This document stipulates that should one’s heart stop, the healthcare team will not attempt to restart it.
Mark saw his doctor for groin pain. His diagnosis with Covid was made through a blood test.
Mark saw his doctor for groin pain. His diagnosis with Covid was made through a blood test.
My Covid was actually diagnosed through a blood test. And I booked a doctor’s appointment because I’d had some groin pain. Imagine lifting…imagine going to bed, you know when you go to bed, you lift your leg up onto the bed? I was getting pains in my top of my thigh. And I’m thinking, why am I getting pains there? And if I was laid down on the settee and I lifted my right leg up, I was getting the pain. So, I got to the point, I actually got…strangely enough, I actually got a face-to-face appointment with the GP, who had also asked me to do a blood test. But I’ve also read that that too may have been a symptom, though…technically, it’s a joint pain. And then two days after that, I was admitted.
So, on the Sunday, I collapsed. On the Tuesday, I see the GP and I had some blood tests. I think the blood tests came back that same Thursday morning also. But by then, an ambulance was called saying that I had Covid. So, the joint pain was supposed to be a post-Covid symptom, wasn’t it? Not a pre-Covid system basically. So that’s why I’m saying as far as I was aware, there were no symptoms. The fact that I’d fainted, as far as I could see, wasn’t a traditional symptom. But they were…you know, technically they were, but not the ones that were put into the public domain. And that’s where I ended up.
Yeah. Do you feel that if there had been more attention for a wider array of symptoms that belonged to Covid, you would have acted differently?
Possibly. Possibly. But I think everybody knew that I don’t go down. My partner came in and goes, well, you don’t sound right, it’s not like you to be weak, to be down. I just [want to] monitor you. So, like I said, it’s like someone had taken out a battery and I was just like powered down sort of thing.
Mark recalled a moment in which a staff member did not immediately know what to do.
Mark recalled a moment in which a staff member did not immediately know what to do.
And yes, you’re in hospital but you don’t really take it on board that you’re actually in ICU, because of the amount of bodies that are just literally moving around. And I’m saying the amount of bodies because you’ve got to remember, at that sort of time, you had members of staff coming in from Liverpool, Scotland, Newcastle. And every day, everyone’s coming in to help but it’s not unfortunate, it’s just the way it is, they’re not specialists in that department. They’ve actually got to be trained for that particular day.
I had a surgeon who was looking after me one particular day. And she does heart surgery. And I’m thinking, hold on, she’s come down from Scotland to do a 12-hour shift in the capital. Excuse me, and this lady’s got to wipe my bottom. But she’s normally doing bigger stuff. And I just thought that’s absolutely amazing. Then her demeanour and her calm approach was totally wonderful.
Then you had less experienced members of staff. And I remember one particular day, I was on the ventilator and because of the trachy, it has to be…there was a build-up of phlegm and it had to be sucked out. And I don’t know how this happens, but you have to find a way to communicate because you can’t speak. So, I used to tap on the side of the rail, like the bedrail’s a bit like a cot. So, I remember like tapping the side to get someone’s attention. Because you do have people moving very quickly in front of you in ICU but they’re not making eye contact with you. They’re moving up and down. And I suppose they’ve got to do it or, you know, they can’t stop. So, I used to tap on the side to get people’s attention.
And you need to have three people looking after a bed. And this particular young chap, the best way to describe him, I was choking. And I tapped on the bed. And he’s about 10 metres away from me. And he’s looking at me. And I don’t know if he’s frozen or not but he’s looking at me and I’m choking. And I’m saying something in my head, obviously I can’t say it on tape. And he’s just standing there and he’s watching me. And I’m thinking, are you really just going to stand there looking at me? And eventually, he comes over to me and then…it’s the trachy, yeah. And then he pulls the thing out and I go [inaudible]. And I’ve just looked at him. And I’m trying to work this out in my head now, did this guy just freeze because he’s young and he’s new and he had to work it out in his head?
Mark asked to be sent to a rehabilitation unit to regain not just fitness but the ability to care for his elderly mother with dementia.
Mark asked to be sent to a rehabilitation unit to regain not just fitness but the ability to care for his elderly mother with dementia.
We done some rehab in there to begin with. I progressed quite well, and they wanted to send me home. As far as they’re concerned, we can put in physios at home blah-blah-blah. But I wanted to go to rehab.
So, I suppose there was a bit of a standoff at one stage because I said, you’re not sending me home. Because ordinarily, I am my mum’s carer. My mum has dementia. It’s probably one of the reasons why I actually got Covid because when I now look back, prior to Covid I was probably running on adrenalin. Because my mum had become double-handed, she needed two carers in every session. This particular care agency only had one carer working. So, I’d get up at 6 o’clock in the morning, go over to mum’s, I’d be there at midday, and I’d be there in the evening. Because she now had to be hoisted in and out of bed and she also needed to be fed. And my partner said, but you also used to go back there at night, [name], at 10 o’clock at night because I thought that if you left at 6 or 7, that’s nearly, what, 11 hours that my mum’s on her own before she sees another human being. And [inaudible]. So, I used to pop back there between nearly 10 and 11 at night to give her a cup of tea and a couple of biscuits. And then I was doing that yeah, for at least two to three weeks constantly before I had Covid. So now looking back, yeah, I was drained. Totally drained before I actually caught the disease.
So, I said it’s not a case of me coming home and leaving my property. My mum lives in a three-bedroom house. Yes, I live on a ground floor flat, there’s two little steps for me to go into the back, to the kitchen and the bathroom. However, I need general all-round fitness. So, I suppose I actually changed from normally like quite a compliant person, but I actually said, no, not going home, you’re not sending me home, you’re sending me to rehab. My consultant was very calm, and she said, as far as we’re concerned, [name], you should go to rehab. Whatever you…if you don’t want to go home with physio, that’s fine. I said, I’m looking for all-round fitness, I’m not just looking for fitness and to be able to use the facilities in my home, I’m looking to be…for all-round fitness, I know what I want.
And so, it did mean an extra probably three to four days on a normal ward before a bed came up in a local rehab unit and I was transferred to that.
Just after coming home from rehab, Mark was unsteady on his feet. He used a trolley to balance himself and did the dishes in stages.
Just after coming home from rehab, Mark was unsteady on his feet. He used a trolley to balance himself and did the dishes in stages.
So, I was hospitalised, including rehab, for about 66 days in total. I had a friend of mine keeping count. At one point, she was, oh, do you know you’ve been in hospital for 60 days? I said, no. Oh, I’ve been counting the days. Oh, okay. So, I counted the days. Yeah, after coming out on the 27th…22nd of March, it took me about, yeah, nine weeks before I started driving again, just going to the local shops, to the local Tesco’s, just to get things. Use my trolley. Naturally, things I’ll say to my mum, use the trolley to balance yourself, I’m having to tell myself that. Use the trolley to balance yourself as you walk round.
And my back also was beginning to get slightly stronger. I know I haven’t mentioned that but when I came home, I had to do the washing up in about four stages. And yes, I came home with a perching stool, I think the physio would say, well, you can sit there, [name], and position the stool next to the…next to the sink and do the washing up. But I, let’s say, will put the dishes in and run the water. And then there’ll be a pain my back. I’ll stand it for as long as I possibly can, then I’ll come away and I’ll sit down. Then I might get up again about 15 minutes later. Then I’ll go and, let’s say, wash the plates. Then the pain will start, then I’ll come back. Then I’ll come and then I’ll do the cups and then go away and come back. And then I’ll do…come back and do the pots or the frying pan or whatever it is. And then I’ll come back. Then I’ll go and rinse them very quickly, then come back. So, it might have taken four or five sessions to begin with just to do the washing up. But I done the washing up.
Mark insisted on going to rehabilitation so that he could recover the strength he needed to care for his elderly mother. In rehab, he wanted to be pushed to exercise, and found it hard to take things slowly.
Mark insisted on going to rehabilitation so that he could recover the strength he needed to care for his elderly mother. In rehab, he wanted to be pushed to exercise, and found it hard to take things slowly.
My consultant was very calm, and she said, as far as we’re concerned, [name], you should go to rehab. Whatever you…if you don’t want to go home with physio, that’s fine. I said, I’m looking for all-round fitness, I’m not just looking for fitness and to be able to use the facilities in my home, I’m looking to be…for all-round fitness, I know what I want.
And so, it did mean an extra probably three to four days on a normal ward before a bed came up in a local rehab unit and I was transferred to that. There I was given physio. Well, I hung out for this rehab unit on the basis that if I went there, I was going to get rehab three times a day. And the reasons that the rehab team in the local hospital wanted to send me home because they said, well, you’re on an upward curve and you’re just going to get stronger and better. You know, you’ve already started to walk the length of the ward with a frame.
Sorry, that was another thing that shocked me I haven’t mentioned. I was quite surprised that after having Covid and being in a coma for three weeks, that I came out unable to walk. I had to learn to walk and talk again. And yeah, that’s why we had the rehab was to try to get me to walk again. So, I made some very good strides learning to walk.
And then when they transferred me over to the rehab, it wasn’t as expected. I was quite lucky if I got 10 minutes of rehab a day. I seemed to progress well in that 10 minutes with the stretching exercises that you had to do. And this particular person he’ll walk me along the corridor, turn around and walk me back to my room. And that was the end of rehab until the next day.
Then we had a change of staff member over the weekend. And she was absolutely brilliant. She pushed me. She said, oh, okay, so you’ve got the frame, [name]. Yeah. You can walk to the end of hall. Well, let’s walk round the dining hall. So, we walked round the dining hall. And I was about to turn in and she said, no, keep going. No, keep going. Oh, okay. So, I kept going. Got to the end. Oh, well, you can keep going a bit further. Oh, okay. Right, now you can come back. Fine. I felt brilliant. That felt like a physio session. That’s what I came here for, to be pushed. Oh, okay. A lot of people don’t like to be pushed [name]. What you on about? I said, a lot of people don’t like to be pushed. No, that’s what I’ve come here for. I’ve fought for this to come here to be pushed, I’m sitting down here just getting 10 minutes and 23 hours and 50 minutes I’m sitting here twiddling my thumbs. It’s more like old-fashioned convalescence as opposed to rehab, in all honesty.
And I’m thinking, but can we go again? No, you need to pace yourself. Okay. But if he wasn’t on duty, someone else will say, go on, you can go again. And that just felt better. But they’ll go, but you’re tired. And I’ll go, but I understand what you mean where you’ve pushed me to capacity when he’s…I do understand what he means. Don’t push yourself that you’re overtired and then you can’t do another session. But I hadn’t hit that point to feel that point, to appreciate what he was saying. The others allowed me to hit that point where I’ve gone, ah, I get it. And I suppose not all patients are the same. And I was also trying to say, trust me, I’m not going to fall down on you or collapse in a heap where you’ve got to, you know, get colleagues in to lift me back to bed and cart me off sort of thing. I’m not going to do that to you. We’re not going to get into that sort of situation, trust me. And yeah, so I did understand what he said but there was a little bit more.
So, I came home. I had some equipment from the bathroom. My daughter put a washbasin, she reconfigured my bedroom. And yeah, I was self-sufficient. My daughter stayed with me for about few weeks, although she threatened not to be here when I came home. Because she came down from [up north], as far as she’s concerned, she’s done enough. “There’s two of us, get your son to do some of the work. Or get my brother.” So yeah, she stayed here for three weeks.