Paul

Brief Outline:

Paul is likely to have contracted Covid during a visit to the pub in the early days of the pandemic. He spent 47 days in hospital, during which he was mechanically ventilated. He often thinks about the impact of his illness episode on his family. Interviewed for the study in March 2021.

Background:

Paul lives with his wife and 12-year-old son in a remote location in Scotland. His adult daughter lives elsewhere. Paul has worked as a lift engineer for 35 years, from which he partly retired 2 years ago. White British.

More about me...

Onset

Paul lives with his wife and son in a remote location in Scotland (his adult daughter lives elsewhere). He has worked as a lift engineer for 35 years, after which he partly retired.

Whilst he had heard of Covid 19, it seemed unlikely that he would contract it, as for miles around the house there are no other people.

On the 15 March 2020 Paul experienced hearing loss. A few days later he developed a cough and his appetite was off. These symptoms worsened in the following days, and on the 20th of March he called his GP. The advice at the time was to self-isolate so that is what he continued to do. But on the 24th of March (the second day of the national lockdown) his symptoms got worse. His wife called NHS24 for advice on what to do. She was on the phone for a long time because they were so busy at the time. Eventually a clinician told her that she should take Paul to hospital. She drove him there. At the time none of them suspected that Paul had Covid. His wife and son both did not fall ill; something that continued to puzzle Paul at the time of the interview (March 2021), as both had been in the same house as him, and close to him, whilst he was experiencing symptoms.

 

Admission and ICU

Paul did not remember the drive to the hospital, he only vaguely recalled calling his wife and son before he was ventilated. When we spoke to him, he realised that this could have been his last phone call.

He was induced into a coma around 11 pm and would not come out of it for 30 days.

He subsequently had a perforated colon, pleurisy, double pneumonia, 8 blood transfusions and a tracheostomy. Paul spent 47 days in total in hospital: of which 35 days in ICU (30 days in a coma), and 12 on the ward.

On the ward Paul had delusions and dreams that he described as terrifying and confusing. He found it hard to sleep because he was afraid of having these dreams again. (After his discharge from hospital, he would go on to experience flashbacks to the dreams for months, and to request psychological support to try to fathom them.) When Paul woke up, the doctors informed him of how serious it had been, and that he was still not “out of the woods yet”. But he continued to improve.

 

Communication between family and clinical staff

Whilst Paul was sedated, the clinical team was in touch with Paul’s wife, and later his sister to inform them of his state, any clinical interventions and progress. A password was agreed upon to ensure that only the family would access information about Paul. Whilst Paul was in coma, the nurse had asked his wife to send in photos that they could attach to the end of his bedside, so that when he awoke, he would see “something happy”. His wife sent in pictures of the dog litter that their dog had had mere weeks before Paul had gone into hospital.

 

After waking up from the coma

After Paul woke up, when he was first in contact with his wife, he was unable to have a conversation because of the tracheostomy. He communicated with nurses and doctors on a whiteboard, which was initially very exhausting. In early, May Paul realised he had not spoken to his mother, who lived in a nursing home, for a long time. He spoke to her on the phone and hoped she did not realise his voice was still squeaky from the tracheostomy. She passed away 4 days later from Covid. As Paul was still in hospital, he was not able to say goodbye. At the time of the interview, he was planning a service for her as soon as the lockdown would end.

In ICU Paul received professional support from the speech therapist and from a dietician.

Paul received lots of messages from his friends, and even from members of his favourite football club. These gave a boost to his recovery. In reading some of these messages afterwards, he realised how ill he had been.

 

The ward

Around the 40th day of his hospitalisation Paul was moved to the ward, which he knew was a sign of him getting better. He remembered the posters that that were hanging on the wall, made by children at a local primary school to support patients and staff in the pandemic. Having a shower for the first time in weeks felt amazing and was very important for his wellbeing.

Paul was convinced that he could walk, but as the physiotherapists put him in a hoist, he felt a strong pain in his thighs – and it was a long and gradual way to him being able to walk again. He was discharged from hospital in mid-May 2020. He walked out on crutches. He received his discharge notes, which helped him made sense of what had happened to him.

 

At home

The family initially kept two dogs out of the litter, but when this proved too demanding during his initial weeks out of hospital, they kept only one of them. This dog played a big role in Paul’s recovery, as he walked with him as far as he could go, every time a bit further. Initially, Paul had difficulties sleeping.

Since his discharge Paul has been back at the hospital for an MRI and a blood test. The doctor there told him that he had become a legend at the hospital, and that he had come through there a lot whilst he was in a coma. He has been in touch with the support group, ICU Steps, on zoom, which has been a great help. He wanted to meet up with people who had gone through similar experiences in real life, which he intended do after the lockdown ends.

At the time of the interview, Paul still suffered from hearing loss and experiences of brainfog. Although Paul semi-retired two years before his hospital admission, he wanted to return to work part-time. However, his GP had determined that for the time being he was still unfit for work.

Looking back, Paul feels that being in ICU with Covid was traumatic for him as a patient, but he is also conscious on the trauma the episode meant for his family, who were waiting for news and did not know whether he would survive. As a message to others, Paul urged others to tell their stories and not to bottle up their suffering, and to ask for help.

Paul lives on a remote farm and caught Covid in a pub in March 2020.

At the time when you got ill had you heard about Covid at all, because it was very early days?

It was early days. Very early days. There was no track and trace, there was no face mask, the pubs were still open, shops were still open. I think the full lockdown was 23rd of March, I went in the hospital the 24th, but up until then people were going about their everyday business. I think I may have caught it in a pub about two or three weeks before I went into hospital, because when I left the hospital a few months later I was getting in touch with people and a couple of people in the pub had got it. They weren’t as bad as me, but they did catch it. So, I suspect it was in a pub. But I didn’t think I would catch it. I just thought it was miles away. Because I stay on a farm, isolated in [area of Scotland], there’s nine mile till the nearest shop. Either way, if I turn left, it’s nine mile, if I turn right it’s nine mile. And we don’t get many visitors at all. The farmer and the gamekeeper, that’s about it.

Paul’s wife took care of him when he was ill, but either did not get infected, or did not have symptoms.

Did your wife and son feel ill at any point?

No. And this is what I don’t understand, how my wife didn’t catch it, or my son. We’re living in the same house. My wife was cleaning up after me when I was coughing and sneezing, with handkerchiefs. We’re sharing the same bed. Touching the same handles on the doors without cleaning them. You never knew. Eating at the same table. And she was okay. She wasn’t asked to come in for a test or anything like that. The only time she got a little unwell just with being rundown with the worry from me, but there was no Covid symptoms really. And my son was fine. He was fine.

Paul’s wife called NHS24 but had. to wait for a long time before they could help her.

Yeah, my wife phoned NHS24, and she was on the phone for nearly an hour on hold and then giving them information and then trying to let them know what my temperature was. Because I was taking my temperature maybe three times a day, four times a day, and it wasn’t coming down at all, and I was steadily getting worse. The coughing. I was coughing for maybe 12 or 13 hours a day, nearly constantly. I would get up and go to the toilet, which would be about 20 steps away, on the ground floor, and I would be exhausted, short of breath, to the point I would have to sit down and stop walking. I was just so tired. So that was on the day I got taken. She was on the phone for quite a while to the services and they suggested, well, with what you’ve told us, come to the hospital right away.

Paul has a vague recollection of making a phone call to his wife before the doctors intubated him.

I’ve a vague recollection of making a phone call to my wife from the hospital. They let me make a phone call. Now, I didn’t know at the time, but my wife and I spoke later. That was a bit strange, because it could have been my last ever phone call, and I don’t know if the nurses or doctors knew that and they were saying, we’re going to give this guy the use of a phone to phone his wife. But I think the doctors maybe spoke to my wife and said we’re going to have to put him in an induced coma to recover, because my organs were failing. So, I don’t know if they suspected that I was in a bad way, and this could be a last phone call. So, I’ve a very vague recollection of making that phone call and that was it.

Oh, just after I came off the phone to my wife, I had a vague recollection of asking the consultant if I was going to die, and he paused and he suggested to me that they were going to do everything they can to keep me alive. That’s all I can remember really. It was very vague. At some points I can’t remember if I even dreamt that. It might have been a dream. I’m just unsure. And then 30 days later I came out of a coma. But maybe in the middle…I’ve just remembered something. The middle of April, maybe 20 days later or so, they thought there was blood clots, because the kidney dialysis machine was clotting up, so they had to give me a blood thinning medication.

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

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

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

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

Paul vividly remembered the sound of the zips of the makeshift tunnel to prevent the spreading of the virus.

So, you said you were in your own room, so you weren’t in any contact with other patients.

No. I had…in ICU in a coma, I must have been in a room myself. There were plastic sheets that they had to open before a person could come in, and it was all sanitised. Really clean. And then I got moved to somewhere else that just had partitions between the other patients, but I don’t know how many patients were there. I’ve no idea. Then I got moved somewhere else as I steadily got better, I came out of the serious ward or whatever, and then when I got moved to a ward, I had a room to myself again. I think it was to contain infection and things like that, and all the nurses came in, washed their hands, sanitised, had gloves on, masks on all the time. Everything was really clean.

Do you know whether at that time they had any other Covid patients?

I would have thought they did, aye. Because there was a makeshift tunnel, I remember, and they had to zip it open, go through, close it, and then zip the other side open, but they couldn’t open both at the same time, I remember that. One at a time. People go in, they close it, and then they open. They couldn’t open both because, I don’t know, the wind contamination would go, it would be an air vacuum. So only one door at a time. I remember the zip getting opened hundreds upon hundreds of times, hearing that noise of the nurses going wherever it was they were going. I remember that noise. I’ll never forget the noise of the zips opening all the time.

This was in ICU.

Yes.

Paul had bouts of depressive feelings after waking up from ventilation when he realised what his family had been through whilst he had been in coma. He hoped to raise some money for the NHS to thank staff for saving his life.

So, can you remember how you felt in this time in the ICU?

I got a bit depressed with everything, how bad I was, what I’d put my wife and my family through. They were traumatised more than me. I was in a coma; I didn’t know what was happening. I felt annoyed that they had to endure phone calls and me nearly dying. It was as bad as that. I remember thinking after I came out of hospital, when I was home the seriousness of it all. The one night I realised that my wife either had to arrange a welcome home party for me or arrange a funeral. It was as bad as that at one time when I was at my worst. I thought, how would I have been if it was my wife in hospital on life support? I wouldn’t have been able to manage. I don’t handle stress particularly well. I just don’t know how I would have felt. Trying to run the house, the 12 pups and things like that. But my wife managed all that, kept the house running. She cried lots. She painted a fence and the house and the garden, her and the neighbour. The house was spotless when I came home. She was de-sanitising everything, getting it ready for me coming home. I was thinking just crazy things. If I did pass away and I died, how would she have survived the first Christmas?

We were due to celebrate our 25th wedding anniversary last September. We were going to go on a wee cruise or a wee holiday, but with lockdown and things like that we only went for a meal. It was going to be a big anniversary, but we couldn’t have anything really. So, I was very confused when I came too, and I had spells of real depression. But then the nurses were great. In the middle of the night… I never went to sleep. I came out of a coma, I never slept for the next three nights because I was too scared of shutting my eyes and not waking up. But the middle of the night nurses would come in and do their observations and they could see I’d be crying, and they would just hold my hand and talk, speak, reassure me that okay, there’s a long way to go but you’re off the kidney dialysis, you’re off this machine, you’re getting stronger, your pulse is stronger and you’re just doing better, it’s great to see that you’re doing better, so you need to try and stay positive. You’ll soon be going home to your son, and you can play football with him, and you’ll see the pups and there’s lots to look forward to. So, the nurses were great at keeping me positive and reassuring me.

That players of Paul’s favourite football team sent him messages of support contributed to his recovery. He hoped to sell one of the Hibs strips to raise some money for the NHS.

When I was recovering, I came out of ICU and recovering on another ward, I’m a big football supporter and my football team’s Hibernian, and some of the players phoned my son at home to wish him well and cheer him up. I got two of the Hibs players sent the video messages to cheer me up, and I got a phone call from one of my heroes who used to play for Hibs in the 1970s. His name was Pat Stanton. He phoned me, and I could not believe it. It was such a boost to my recovery. My wife handed in my mobile phone to the hospital and I had over 300 messages and texts from people wishing me well. At the start, in hospital they were texting once they’d heard, so they were sometimes 25 days old, these texts, but I couldn’t see them, I’d been in a coma, but I had a chance to read them, and people were just so on my side.

But the football players sending messages to me was really fantastic, and when I came out of a coma a couple of days later one of the nurses actually said to me, I’m going off…I’m on a roll now, I just keep remembering things. Sorry about this. She says, do you know Hibs…she knew Hibs were my team, they’re the first team in Britain to put thank you, NHS on their strips, on the front. I didn’t realise that because I’m in a coma. Then when I started to get better on ward, I thought I’ve got to try and get one of the Hibs strips and get all the doctors and nurses and consultants to sign it and try and raffle it and raise money to put into ward 20 at the hospital. So, when I got better, I done that, I handed the strip in and I got all the doctors and nurses to sign the strip. Because usually the football players sign the strip and you keep it as a memento, but I got all the doctors and nurses to sign it, and it’s in my house. Once lockdown finishes, I’m going to raffle it and try and raise some money for the NHS.

That’s a great idea, yeah.

Yeah.

Yeah. How did the football players get your number, and how did they know you were in hospital?

The word got round [place in Scotland]. Just friends of friends of friends. I don’t know how they done it. Someone designed a poster and there was maybe 30 or 40 people on my Facebook, they all had this poster, and it was the Hibs badge, their motif, and a Lambretta scooter, because I like Lambretta scooters, and it said welcome home, [nickname]. That’s what I get called. So, when I opened up Facebook when I could use it again all Facebook was covered in this badge. Everybody was doing it. I thought, wow, everybody was rooting for me. But friends of friends just got in touch with Hibs players and said could you do this; it will only take a few minutes. But it was a real boost to my wife and my son and my family that everybody was thinking of me.

They’ll certainly have your support for the rest of your life.

Aye.

Paul remembered that his room on the ward was covered with NHS rainbows drawn by local primary school pupils.

Oh, and I’ve just remembered, when I went into this room when I was getting better there was lots of wee posters from the local primary school. And the head teacher had got wind that this hospital I was in in [name place in Scotland] had a lot of people who had Covid and a lot of sick people, so could we all do a wee poster, and it was the NHS rainbow. And they had to draw a wee…not knowing who it was going to get sent to, but one, there was two posters in my room, and I noticed it right away and wondered…well I thought maybe my son’s done it. But it was a school down the road, and it said something like ‘get well soon, hope you make a speedy recovery’ or something, and it was child writing, and it was lovely! It was from the local school.

So, a few months later, maybe a month later actually, I phoned up the school and I spoke to the head-, the secretary – the headmistress was busy – and I said, well, you need to pass on my comment that… I told them how serious I was, and I was in a coma for 30 days. To thank the headmistress and thank every child that had done that, it was a fantastic thing to do. There was tears in my eyes when I read it, just wee boys and girls writing to strangers saying get well soon. I thought it was a lovely thing to do.

Paul’s sister took over from his wife as a contact person for the hospital, when his situation become critical.

Can you tell me a bit more about what communication between your wife and the clinical staff was like at the time?

Yes. I think they were on the phone nearly every day. They were very good. Communication was really good. They didn’t try to hide anything. They were totally truthful. But after a time when I think I was probably at my worst when they told my wife be prepared for the worst, he might not make it, she couldn’t take any more phone calls, she was traumatised. So, my sister had to be the go between of the hospital and the family. My sister stays in Wales, and I’ve not seen her for over a year because of lockdown, so we can’t even grieve properly for my mum passing away. But she was in touch with the hospital, and a cousin of mine who was a nurse, she’s now recently retired, she spoke to the hospital because she knew all the medical terms and the technology of what they were actually talking about. She could ask the right questions. And then my brother was on the phone a couple of times to consultants. So, the communication I understand was really good. Every day they spoke.

Paul stopped visiting Facebook to share his experiences, because he found the negative content too draining.

I was in a Facebook group for long Covid and I was sharing my experiences with that, but I came off Facebook on Christmas day because there was too many negative comments on Facebook. Not from the Covid group, but other Covid deniers, and I was getting into arguments, and the psychiatrist says, Paul, that will bring you down, that’s too much negativity, you need to stay positive, and if it means coming off then that’s the right thing to do. So, I came off. My wife came off Facebook about November, a month or two before me, and she says, it’s a great sense of relief that you didn’t have to put up with all the rubbish and the people wanting attention and posting controversial stuff just to… So, I don’t miss any of that. It’s great to be off Facebook. That was another part of my recovery, getting off that and seeing less negative things and putting up with arguing with people because they think Covid’s a hoax and stuff like that. It gets you really annoyed. But I’m over that now I don’t have to see things like that.

Paul felt anguish at the thought of what his family went through, and that his son could have lost his father.

So, looking back what would you say is the hardest thing for you?

Oh, well, I think about death a lot, and I’ve been doing that about two or three weeks running up to yesterday being the first anniversary. I think about what would have happened. I shouldn’t put myself through this, but what would have happened, what my wife and my son… Because I spend a lot of time with my son, going to football with him, I go camping with him. He’s now 13. We haven’t went for the last two years. But I think he was about one or nearly two when he first slept under canvas in a tent, and we’ve been going every year since. He loves the outdoors, and I thought who’s going to take him to the football, who’s going to take him to see Hibs, who’s going to take him camping, who’s going to buy him his first pint? Dads are meant to do that, and I might not have been there. I think about that and I torture myself that. I shouldn’t. Maybe that’s still a bit of negativity in me. But I do a lot of thinking, what could have happened. But it’s great to still be here. We’re looking forward to hopefully we’ll get a summer holiday later this year. We normally go to Greece, Kefalonia, that’s a small island in Greece. We’ve went about 19 times now. So we’re looking forward to going back there.

Throughout telling me your story you’ve used the word traumatic a number of times. Would you say it’s been really quite traumatic for you then?

Aye, it’s been traumatic for me. I sometimes think it’s bene more traumatic for my wife having to live through it. I’ve got an excuse, I was in a coma, I don’t remember anything. But she had to. Every time the phone rang at home there’s a split second saying am I going to lift this phone and Paul’s dead, and she’s going to have to explain to my son. So, I sometimes think yes, the person who’s got Covid is in a traumatic situation in ICU, but the family can suffer just as much, maybe physically and mentally.

Reading the clinical notes made Paul realise how ill he had been, and to fill in gaps in what he remembered.

When you left the hospital or when you were discharged from the ward did, they give you any summaries of your clinical notes?

Yeah. It wasn’t for a couple of months after that someone got in touch with me, seen how I was doing, and she asked me if it would be useful did I want to know what actually happened to me in hospital. It was like a small diary of what happened. I said, oh, I’d love to, because I need to fill in the gaps. I need to find out what happened on one particular day. Because my wife never kept one, and she sometimes can’t remember on what day this happened or what day that happened. So the critical care nurse sent out something to me and I read it and I thought wow. I knew I was seriously ill, but it put it into a bit more perspective. I could see on what day, and they gave me a note of what medicines I had and what machines I was on and how I responded to the machines and who was taking care of me and stuff like that, which I thought was a good idea because it helped me fill in some gaps.

The gaps are difficult, I understand.

Yes. Aye. There’s a lot of blank spaces. And it goes some way to helping understand what happened.