A-Z

Brian

Age at interview: 55
Age at diagnosis: 55
Brief Outline:

Eight days after the onset of symptoms at home, Brian was admitted to hospital with Covid. Following the decline in oxygen levels over eight days he was admitted to ICU, where he spent six days on the CPAP (Continuous Positive Airway Pressure) mask. He suffered a heart attack. He was discharged home after a total of 20 days. He continued to be breathless seven weeks later. Interviewed for the study in March 2021.

Background:

Brian works as a roofing contractor. He is married with one child. White British.

More about me...

Onset

In late December 2020, Brian, his wife and his son developed symptoms of Covid. They each took a test in early January 2021, and all received positive results on 4 Jan 2021. The symptoms were particularly bad at night: whilst Brian was unable to leave the bed, his wife managed to let the dog out, but she struggled getting back up the stairs due to breathlessness.

Brian and his wife called 111 then but were told that if at all they could manage at home, they would be better off staying there. On the eighth day after his symptoms had begun, Brian had become sensitive to light, had a terrible headache and struggled to breathe. His wife called 111 again at noon, upon which the paramedics were called out. The ambulance arrived at midnight. The paramedics did a number of tests and measured his oxygen levels. Brian was taken into the hospital.

Admission to hospital

Brian collapsed going in as well as coming out of the scan. He was initially placed on a monitoring ward, where he was for three days. He has a negative memory of this ward. He remembers being asked countless times whether he wanted to be on a clinical trial, which he did not want to be. A fellow patient shared a lot of helpful knowledge with Brian. He was on high flow oxygen and CPAP (Continuous Positive Airway Pressure), but this did not help his breathing.

After four days, Brian was moved to another ward. He was getting weaker and found wearing and using the CPAP mask an awful experience. Air was pushed into his lungs, and the mask pressed down hard on his face, on the bridge of his nose. He recalled not fully comprehending what the mask was about. When his condition continued to get worse, it was decided that Brian needed to go to ICU. Here, he was put in a side room, which allowed some relief from the sound of other people’s machines. At this point the clinical team considered putting him into a coma to be able to start invasive ventilation. His wife was called, and she asked them to not do so unless they “absolutely had to”.

Experiences in ICU

Brian has had uncomfortable experiences in ICU with several failed attempts to put in a catheter and an IV line, hampered communication and with particular staff members who left him unclean after washing him. This has affected him psychologically. He felt that other staff had been amazing – again, one nurse in particular was able to make Brian feel comfortable and relaxed.

At one point Brian was told that he was having a heart attack. He was taken for an angiogram (an X-ray procedure that can be both diagnostic and therapeutic. It is used for evaluating blockages in the arterial system). Only then did he realise the knife edge he was on, and even more so when a doctor came to inquire whether he could use his case in two medical papers. Brian is a believer in Jesus Christ and thanked the Lord for surviving the heart attack. Brian remains unsure as to how his health could have deteriorated so rapidly with Covid.

Brian spent 6 days total in ICU. He remembered many requests to prone and recalled refusing many as he was already in the best position for his breathing, as he could monitor (and, with little else to do did monitor) his own saturation levels.

Transfer to the ward

After ICU he was transferred to a cardiology ward. Whilst the heart doctor had declared him ready to go home, it was his breathing that kept him from going. As soon as he got out of bed, his oxygen levels collapsed, leaving him exhausted. Brian became a keen observer of his oxygen levels. On the best days, his levels would go up to 89. When he went to the toilet, they would plummet to 74.

In contrast to the room in ICU, which had a window, a fan and air-conditioning, the ward was warm. The ward was also very loud, with machines constantly beeping, a noisy dispenser, and most people seemingly being admitted to the ward at night. Brian was worrying about other patients and whether their deterioration foreboded his own. The nights were busy, and the days were busy

Communication with his wife and mother.
Brian communicated with his wife and mother via his mobile phone, initially via text. When he was moved to the cardiology ward, he felt better and could thus communicate with them more frequently and make calls. However, connection was often poor, hampering (phone) conversations.

Support on the ward

Brian would get visits by two physiotherapists, who would do breathing and walking exercises with him. Oxygen levels were measured before and after the test. At this point Brian mentally needed to go home. Then on an evening after a morning during which the levels were “no good”, a doctor came in and let him go home despite his levels not being as high as they should have been. Brian was happy about this, although it did mean that at home it took him another 2 weeks to get up to the levels he would have needed to be discharged.

Discharge

In total Brian was 20 days in hospital. At the time of the interview he was 7 weeks out of hospital. The beauty of coming home was the quiet and being able to control his own space. After discharge, he was inadvertently given the wrong antibiotics for an infection at first, which Brian described this as a human mistake, but one that nevertheless affected him: at this point he was weak; even going to the toilet required energy and effort, and left him exhausted every time, and the infection may have made this worse.

Recovery

At 3 weeks he started walking the dog. Brian had difficulties climbing the stairs at home. He had wanted a bottle of oxygen, but they could not give him that as this is classed as a drug. He eventually bought an oxygen generator himself, against medical advice, and used this for 1,5 weeks. His GP was anxious about him using this machine and insisted that Brian go get his levels (and the machine) checked. But Brian had no plans to do so, for he did not want to go back to hospital.

After 4 weeks Brian was outside every day, like he used to do before his Covid infection. To Brian, being outside was his rehabilitation. He began doing things around the house, also as a way to establish where his limits were. He started working a bit, the lighter jobs.

Follow-up care

Brian has had some follow ups with the respiratory department and with ICU. The ICU staff ended up speaking to his GP as well. His clinical support staff told him that breathlessness can last up to 12 weeks; they also said that the nightmares that he had had, and sometimes still had, were common, and that they are likely to stop eventually. Brian has got an X-ray appointment coming up, and a haematology appointment.

Reflecting back

As Brian saw it, “Covid hits twice”: there’s the virus and its effects on the body itself, but then it also seems to pick a fight with something else, in his case the blood clot. It has also affected his businesses. At the time of the interview, his recovery was still underway, so he was yet to discover how Covid and his admission were affecting his ability to do the bigger roofing jobs.

Due to his experience Brian and his wife are now considering to act on their longstanding wish to change their life, and perhaps even their home. He had never been so exhausted after work; a new pace of life, and semi-retirement were now on the

 

Brian and his wife “managed” for eight days at home before calling an ambulance.

Brian and his wife “managed” for eight days at home before calling an ambulance.

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So, myself and my wife, we went and had a Covid test. We went to [place], had a test and you wait whatever, I think it was a day or so, the next day they said, yes, you’ve got it. But, of course, we felt okay, even though you’d had the results of the Covid test. I knew I had this headache, and at night time when your blood pressure is dropping was really bad with the headaches and you’re just really not feeling very well.

As I say, I managed eight days, and the funny thing is, when I look back, because my wife stayed at home and she said she had a couple of moments. Because, we’ve got this dog and it just likes to go out in the middle of the night for a wee, and so my wife is now. When I think back for me, I’m just thinking, there is no way in the height of mine that I would have got down, I couldn’t have got out of bed, let alone go down the stairs. She had a couple of moments when she’s gone downstairs to let the dog out and, by the time she’d got back to the bottom of the…she’s at the top of the stairs, all her lips are turning blue. My son is, like, mummy, shall we call an ambulance.

I think she called 999 and they said, listen, my love, if you can, if you can stay at home, you will be much better off. And so, you know, by the time she’s at the top of the stairs and then you, kind of, recover the breath. I mean, I think she did really well to overcome that. Looking back, I had this problem with a headache, could I have stayed at home, could they have perhaps taken me into A&E, you know, I collapsed there, I was being sick. I don’t know, why did I collapse, you know, going to the CT scan, coming out, I don’t even know why, what was that about, I was already on a gurney, it wasn’t that they were asking me to walk into a different department. So, I fainted twice and then, when I got back, I was just retching, I don’t know, what does that mean. Could I personally have stayed at home? Looking back, no.

 

Brian was taken up to intensive care after five days on the ward.

Brian was taken up to intensive care after five days on the ward.

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My stay in that particular ward, what I noticed was, and I think I was in there for about…I must have been in there for five days, is that slowly but surely trying to keep my pride and dignity so I could go to the toilet. Every time I stood, one minute I would be talking to two blokes, two men opposite me, just chatting away, and soon as I got the nurse to pull the curtain around and pee in the bottle…and all I had to do is put the bottle back on the side of the table and get back into bed. I was absolutely wiped out, I was exhausted, straight back on oxygen.

And, I remember the two guys, because one of them I still talk to now, we still phone each other. He said it was just unbelievable, one minute you’re talking, have a pee, screen comes across, screen comes back and it’s just like a different person, I was exhausted. So, I think what was happening is, I became so exhausted with that, that’s when, I suppose, they’re looking at all of my stats over, I don’t know, however many days, and they’re just watching things slowly, slowly get worse.

So, the intervention came when they took me up to intensive care and I was put in a side room, which was a relief for me because, you know. I’d listened to so much nonsense and stress with this old boy downstairs I thought, at least I’m in a room and I haven't got to listen to the nonsense. And also, when you’re on these wards, you know, there is everybody else’s machines going, they’re bleeping, and so I was just, sort of, relieved at that point to be on my own.

 

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.

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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.

 

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.

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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.

 

Waking up at night with staff in PPE by his bedside made Brian jump.

Waking up at night with staff in PPE by his bedside made Brian jump.

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The funny thing is, when I came home, which was really…there were a couple of things that happened was, when I was in intensive care and my stay downstairs, because they keep, these nurses keep coming up throughout the night taking blood and measuring stuff. And, obviously, at times I would drop off to sleep and then, you know, you’ve obviously got somebody, you can feel somebody’s presence. So, a couple of times I’ve woken up and you’ve just got somebody with a mask or a face shield right next to you, and I just jumped out of my skin every time, which was quite funny because I caught them unawares, as well. I’m jumping, they’re jumping and they’d have to say, sorry, have you just woken up, and there’s somebody leaning right next to you.

And so, when I came home, for about a week I had some dreams, when I was waking up in my own bed at home. And I’m thinking… so, you’re in that drowsy, trying to figure out, where am I, and I remember thinking, blimey, I’ve got somebody really close to me, right next to me. I’m thinking, that’s a bit close, but it was my wife. And then, you realise, blimey, I’m at home. So, just in 20 days it just all got a little bit twisted where, you know, trying to work out the reality of where I actually was.

 

Witnessing the death of another patient made Brian wonder where he was in the grand scheme of things.

Witnessing the death of another patient made Brian wonder where he was in the grand scheme of things.

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But even when you’re in intensive care, when you’re looking at other people and here I sit and there’s, you know, you’re looking at all these people with different… You’re there for a reason. You may not feel…you, kind of, feel detached that all of these people are worse than you and, actually, I feel much better. And, I think I was, I think I was in a much better place than all of them, clearly. But even downstairs you’re still trying to work out… I mean, the old boy that came in…this was in cardiology and he came, they wheeled him in, he was at the end of his life with lung cancer and he died, he died that night. He came in, yes, he was there less than one day. So, when you’re when you’re watching all of that, watching his family come in and his sons come in, and just watching all of that, you know, different, all different people going through all different things, just trying to figure out where you are in the grand scheme of things, really. From an appreciative side and just trying to weight it all up, weigh life up, ask the question.

 

Brian tried not to ‘complain’ because he felt sorry for the nurses who were visibly exhausted. He is thankful for the care he received from one nurse in particular.

Brian tried not to ‘complain’ because he felt sorry for the nurses who were visibly exhausted. He is thankful for the care he received from one nurse in particular.

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And so, you know, yes, I suppose, you’re just watching a lot of people busy, a lot of nurses busy, and they were…I felt sorry for them because they had their masks on for however many hours. I’ve worked with masks and it’s not pleasant so, as much as I was moaning about the CPAP, watching doctors and nurses just continually work these long hours with these P3 masks on, I felt sorry for them. So, you, kind of, don’t want to complain, but there are moments when you want to talk to somebody and you just want somebody to listen, and I felt at times they just weren't listening.

Then, when I…there was that one guy, I think they do, like, three day shifts, there was that one particular nurse, when he came in, he was just... So, we can all tell, you can tell when somebody’s going to come…when somebody has got a long face, you know. When somebody, and I’m not saying that they don’t care, the way people walk, the way they hold themselves, the way they communicate. And then, you can tell when somebody’s got just a different personality, and so the guy that ended up, well, I was blessed to have him look after me, his name was [nurse], just beautiful, a South African guy, [nurse]. He was, he was just a darling, just a great guy.

And, I remember waking up at different times of the night, he was taking bloods all through the night, as well. But, you know, sometimes you get into the early hours of the morning three, three thirty, and you’re looking because it’s dark, all the lights and all the machines are going, and some of these guys were just asleep, some of them were just dropping off asleep.

And, there’s nothing worse than when you really need to rest or sleep, and I’m thinking, I’ve got the luxury of lying down and this guy was just nodding off. I wished I could have swapped or said to him, just budge over, come and have…just come and have a kip with me, just lie next to me, I won’t say anything. Just, you know, out of humanity just reach out, there’s nothing worse than thinking, I just need to go to sleep. But he cared for me really well, he really was, and that meant a lot, an awful lot to be, because you could just feel…I just felt relaxed.

 

Brian helped another patient on the ward and was given encouragement himself by another.

Brian helped another patient on the ward and was given encouragement himself by another.

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On the ward there were lots of issues, there was an old man came in, quite with it, he was 94, I remember his name like it was yesterday. Again, I remember getting stressed out with watching him, because in just on evening he broke three CPAP masks, he was kicking over the side table, water going everywhere. He was accusing the nurses of being actors, it was just… I mean, I spent that first night just kept on pushing the buzzer, not for myself but for him, that was quite stressful.

There was a guy next to me that was recovering from Covid, he knew quite a lot, his dad was a professor and that gene pool of information and knowledge had, obviously, been passed down. So, he was pretty much on things, and he was quite an encouragement to me. But all the while, for me, what was happening was while I’m there and they’re trying to figure out, you know. Trying to give me medication, trying to find out what was going to happen to me or where I was going with my illness, bit by bit I was struggling.

 

Brian spent two weeks at home before he reached the oxygen measure he would have initially needed to go home.

Brian spent two weeks at home before he reached the oxygen measure he would have initially needed to go home.

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But I prayed to God, and this doctor came in one afternoon asking me questions and, by the evening, she came in, walked up to me, tapped me and she said, Mr [name], you can go. I thank you, Lord. So, I was delighted, what gave me the most pleasure, I thought, those two physiotherapy nurses are going to come in tomorrow thinking, how did he escape Alcatraz, how did he get out. And, that is a true story, in fact, it’s been confirmed because I did speak to the hospital and I did mention it and they said, well, they did come back and say, how did he get out.

Why did they let you go with such low levels, if nothing had changed?

Well, because on my form it said that I was at 92 and, of course, you know and I know, that it says whatever… So, it starts at 92, so it could have read 94, it could have read 95, and it can only drop five per cent, and if you fail that… So, the last test that I did a South African physio girl came in, two ladies, done the test in the morning and I just wasn’t getting anywhere with it. She said, I’ll come back in the afternoon and I’ll give you one more chance, because I just said, I just want to go home.

And, when she came back in the afternoon it was just sat at 89, I knew what it was going to be because I’d been sitting there watching it on the monitor, so I already knew. So, I just knew I wasn’t going home, I’d already said to my wife, I ain’t going anywhere, but I’d already prayed about it and said, Lord, I need to go home, can you get me out of here. So, when the nurse came over and started asking questions at dinner time, and then in the evening came over and tapped me and said, once you’ve got your meds… I said all my medication is already in the locked drawer, the doctor has already said I can go, it’s the physio girls that won’t let me go.

And, as I said, my oxygen levels, it took me about two weeks of getting out of the hospital before they would have been happy. And so, somebody… On my form it said that I had got to 92 and whatever, and it was, like, tick get him out of here, which is what I asked for, thank you, Lord.

 

Brian initially walked small distances. Later he did some work outside the home as a form of rehabilitation. He used an oximeter to check his oxygen levels and “work out his parameters”.

Brian initially walked small distances. Later he did some work outside the home as a form of rehabilitation. He used an oximeter to check his oxygen levels and “work out his parameters”.

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It took me, while I was at home, it took me a couple of weeks, probably two and a half weeks of just taking it real, really easy and just trying not to push it. At about three weeks I just started to get up and thought, well, I’ll start by walking the dog. So, there’s a field at the back of us, it’s got a little bit of an incline, the walk would probably be two miles, and so I started to walk that dog real slow, real, really slow. As soon as I was going up a slight incline I would have to stop, so throughout the walk there were a couple of slight inclines, and I would just be pulling up oximeter looking at it and it would just be dropping like a stone.

I remember one day walking around that very field and I looked behind me, because my dog was, sort of, looking to see if there were any other dogs coming in, and I saw an old man walk into the field right in the distance. And I was walking so slow that he caught up with me, which I remember thinking, wow, I’m going that slow. But I just kept on, every day just walking in the fresh air.

So, today is just getting into the seventh week of me being out of hospital, at week three, week four I’ve been working around outside every day. I look at it as a rehabilitation, so I’ve been probably doing way more than some of the doctors probably would like me to be doing. But I’ve been, sort of, a busy boy doing stuff around my house, on the roof, which is part of my nature, just things that needed doing, changing fence post, digging concrete out, you know, dealing with tons of aggregate, shovelling out of bags. And then, just working out where my parameters were, oximeter in my pocket, watching the levels just drop, so I’ve just been…

Rehabilitation is rehabilitation, I’m not one of these ninnies that are just going to sit looking outside a window. rehabilitation, it doesn’t matter what shape or form, is tough, so you best just get on with it, and so I’ve just been doing that. And so, each week I can say that I can definitely see an improvement, if I come up…so, when I come up in the stairs in this interview you notice that I was just short of breath, and ever since then I’ve been talking fine. If I go for a walk with the dog and the phone goes and I’m walking and talking I will get breathless.

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