Pete

Brief Outline:

Pete and his wife were both admitted to hospital with Covid19 during the second wave, in October 2020. While Pete’s wife made a rapid recovery he was transferred to ICU, where he spent 15 days on CPAP (Continuous Positive Airway Pressure), followed by another 10 days on the ward. Pete continues to experience shortness of breath and fatigue 7 months after discharge. Interviewed for the study August 2021. Age at interview: 62

Background:

Pete and his wife have been married for over 40 years. They have three adult children, who live elsewhere. Their eldest son supported his parents after their respective discharge from hospital. Ethnicity: White British.

More about me...

Onset

Before falling ill with Covid, Pete had not been particularly worried about his own health. He followed the public health advice in place at the time. When there was a “bit of a licence to go back out” in October 2020, he did. Looking back, he feels the government could have acted sooner to protect the public’s health.

Pete began feeling ill with cough and sweats. He had a temperature. He thought it better to sleep in another bedroom than his wife. As it turned out, it was too late: she also started developing symptoms. When Pete began to hallucinate, his wife called an ambulance. The ambulance personnel took him to hospital, but also called for another ambulance to take Pete’s wife in, who was also deteriorating. From that point onwards, Pete did not see his wife for a whole month.

Admission to hospital and ICU

Pete’s wife quickly improved and was discharged from hospital after approximately a week. Once at home, she “slept off the condition in isolation”, whilst her neighbour helped with things like shopping.

In contrast, Pete was admitted to hospital, where he continued to have a cough, a high temperature and delusions. He was admitted to the intensive care unit (ICU), where he would be for 15 days, on CPAP (Continuous Positive Airway Pressure) for 24 hours a day. Pete participated in a trial, for which he gave blood. Then after 10 days, Pete too started to improve slowly but surely. Because he had been lying down for days and his oxygen levels continued to be low, he was not strong enough to move about. He was proned to help his breathing, something Pete continued by himself for eight weeks after getting home.

Contact with others

Pete remembers a few staff members in particular who went above and beyond – such as a nurse with who he used to have a bit of banter. But most of the staff however, swapped over every 2 days or so, so building relationships was not always possible.

Whilst he was in ICU, Pete was not in contact with his wife, as she was also in hospital. At one point a nurse helped them to connect – his wife was taken close to where Pete was, so that he could personally tell her that he was doing ok.

Pete was very aware of patients around him, and frequently inquired about other patients’ wellbeing and experiences, but was never told much about them. From his side room he could see the entry to the ward, where people went in, and bodies were taken out. These pictures stay with him. Nevertheless, he tried to be positive, and he even sang for a journalist who was filming on the unit to show that he was keeping up his spirits.

Transfer to the general ward

On the 16th day, Pete was moved to a general Covid ward, where he would stay for 10 days. His oxygen levels started to improve. He could still not walk, as he had no strength at all in his legs. Pete was visited by the physiotherapists, who made him walk a few steps whilst monitoring his oxygen levels. It was frightening to start walking again. He ate well which helped his recovery.

Pete tells me that he was determined to do things independently (pick up a drink, clean his teeth, feed himself), and not to let the nurses do everything for him. He felt that doing so would help his recovery. In the last 2-3 days on the ward Pete was able to go to the bathroom independently and move about a little bit, although he still needed to rest after exertion.

Coming home

Pete was discharged from hospital in late November 2020. His wife, still weak from her own infection, and his oldest son, who came to the house to support him, helped him shower and shave during the first 10-12 days. It was very important to Peter “to have back-up” from his family. However, because Pete’s lungs were not functioning that well, moving around continued to be a struggle. He was so breathless and tired that he had to be re-admitted for one day after being at home for 2 or 3 days.

Many of his friends tell Pete he looks so well. Whilst he feels “10 times better” than he did when coming home from hospital, when he was lethargic and pale, he says “what I look like and how my body is are two different things”. His Covid infection has led to secondary scarring in his lungs, which means that he is no longer as fit as he used to be. Pete still struggles with brain fog: he forgets little things. His doctor thinks it is a symptom of long Covid. Pete also experiences dizziness when he gets up, body sweats, and a change in temperature halfway through the day. His voice has been an issue, particularly after exerting himself. Pete has been back at the hospital where a camera was inserted into his throat to see if there is something in the voice box. He was told that “there is no cancer” but he is unsure why the conclusion of the test was so specific; the relation between his voice and cancer was not explained to him.

During one of these follow-up care appointments 3 weeks before the interview, a doctor told Pete that 5% of Covid patients continue to experience symptoms beyond a few months after their infection. He called this long Covid, but no particular information or forms of support were provided. Pete has done some Googling by himself after this. He generally looks up information to inform himself.

Pete has been in touch with one patient with whom he was in ICU, and who helped each other out a bit. Pete has not been offered access to a support group. He is unsure whether he would have taken up this offer had it been made, as he feels that people have different needs and he is trying to get on with things, to get better.

When asked what kind of support Pete would still like to receive, he says it would have been good if ICU nurses that he has been speaking to over the past months could remain in touch. He sent the nurses a treat when he came home to thank them for their care.

Attitude to recovery

When asked what has helped him recover, Pete says that the one-to-one care from nurses on ICU was essential, as was support from his family, and doing things by and for himself as part of his recovery.

Pete is determined: “you got to get yourself back into things”. In the beginning, he exercised every day; between December 2020 and February 2021 he started to do more and more walking and shopping. At the time of the interview (August 2021), he is still at home 80% of the time, not because he wants to be, but because he does not feel like he can go out due to fatigue and breathlessness. “Going out is difficult”, but, Pete insists, “I won’t let it stop me”. He cannot walk as far as he used to, but he is “too young for a walking stick” so walks without it.

Pete’s ability to do the work he did before his admission to hospital (pastoral visits) and care activities for his mother and brother, both of whom live in residential care homes, has been impacted by his Covid infection and stay in ICU. His wife now does most of the care for his mother and brother, and Pete just does what he can. He still does 2-3 pastoral visits a week, but no longer as many as he did before. Sometimes Pete helps out in his son’s restaurant. He does find that when he has done so, he needs to rest afterwards.

Other health conditions and interactions with Covid

Before Covid Pete was already living with a number of health conditions that led him to be medically discharged from his job as a postman. He has had (genetic) heart problems (pericarditis) since he was 40 years old, arthritis, and fibromyalgia. He has had degenerative disease in his spine since 2010, which has given him a lot more pain since his discharge from hospital. He is unsure whether this is due to Covid or not. He feels that he has to balance seeking help for these symptoms with other things going on. He prioritises some symptoms to be sorted before others “because it is difficult to see a doctor at the moment, and the NHS is under a lot of pressure at the moment”. Pete feels that it is better to cope with some things independently, and he finds that he copes better with Covid than he did with previous health and mental health issues.

Pete is on a long list of medications. Most recently he has been prescribed steroids to clear the passages to his lungs. So far, he feels no effect, but thinks that this may happen more long-term. Pete is unclear about how some of the medications he is on may be stopped, something he has been wanting to explore with a doctor, but he feels that this is a minor problem in the face of the bigger problems the NHS is currently dealing with. Pete plans to discuss this with his doctor when he next sees him.

Covid changed his perceptions of himself

Whilst Pete tries to live as he did before, he does so in an entirely different way: he now “has to respect [his] body a bit more”. He had to find out he cannot do things like he used to. He is reading a book about an explorer, which is an inspiration to him to just get out and do things.

Messages for others

For Pete the main thing is to be “mindfully positive” when one is in a dire position with a 50/50 chance of survival. He feels that patients would do well to accept their position, to listen to nurses and to let them give them the care that they need. At the same time, he feels that nurses and doctors should listen to patients as well: “asking again” may often elicit new information, as patients like himself who are tired and sometimes delusional may not immediately know the answer to a question.

Pete took care of his wife when she was unwell. Then he also fell ill, and both were admitted to hospital. She was discharged before him. When he came out, she was still too weak to care for him on her own, so she asked their son for help.

I think what strikes me in your story is you were both so unwell at the same time. So, when the ambulance came, they must have seen her…

Yes, they took me away and at the same time said to my wife I’m afraid your oxygen levels aren’t right, you’re not well, we’d better get an ambulance for you as well. So, we both got taken away at the same time. But she was definitely, that weekend, more poorly than myself. I was still moving about and doing things and then all of a sudden it seemed to hit me. Obviously, probably, because we were still in the same bedroom together and I, possibly earlier, should have gone into the other room. But at the time I was looking after my wife, so you just carry on.

Yeah, it is one of these things, right? It’s just very impossible to take care of somebody without being physically close to them, so… Yeah.

Yeah, I should have got all the gear on, shouldn’t I, and put the mask on and…? But you don’t start doing that, do you? We’ve been together a long time. We’ve been married 40 years, you know, and so we know one another. Which is important as well, isn’t it? And you can see when one another is not well or there is something wrong. So, you try to help the other person out and that’s how relationships work, isn’t it? So that’s what you do. And then next news, you know, we were both poorly, so there was no choice in the matter, you know.

Yes. And how do you think it affected your ability to take care of each other after you came back from hospital?

Well, it was interesting that my wife decided to get my eldest son involved to help me. She wasn’t fit enough to manage on her own and, like I say, she did say that she slept it off and she felt okay in herself. And she wasn’t as debilitated as me. She wasn’t breathless or… and the ironic thing is that as a child my wife had bronchitis, which was quite… you know, the chest and everything. That didn’t affect her in that way. So Covid’s a strange phenomenon.

Pete felt that it was important to stay on his front as long as he could. He continued proning after leaving hospital.

Well with proning you need to put your hands above your head or in a position that you feel comfortable with, turn over onto your belly, so that you’re belly-down and then have some pillows to keep your head further up, if you will. And do it for at least, if you can, a couple of hours. It sounds a long time but eventually you get so used to it that you fall asleep. And you might fall asleep and do it more than two hours. But basically, it’s just a question of…

I always sleep on my back; I always have done, like I’m in a coffin, with my feet out of bed because they don’t like the quilt, because of the arthritis and things in my toes and that. I have a bit of neuropathy as well, at the bottom of my feet. But that’s basically the stance that you have to use. And the longer you do it, the better. And so, I felt that it would possibly be important that I try to carry on, because I still wasn’t… I probably did it for another eight weeks while I was at home and then I felt that was enough and went back to normal. And now I’m just living with it, so I’m okay. So yeah, that’s proning.

Ten months after coming out of hospital, Pete continued to experience fatigue and brain fog.

Independently you’ve got to, slowly but surely, get yourself back into things and start doing things. I get out, I go and have a drink or maybe do a bit of shopping now and things like that. But it’s probably taken the first…December, January, into probably February before I started even thinking about just going out, so forth. And then I’d sit down and have to rest again. And I’m still probably 80 per cent of the time at home. I don’t want to be but some days I don’t feel as though I could go out and do anything. Even the last two days I’ve been pretty well exhausted, sleeping. I can sleep quite easily, and my wife will say… I’m on a lot of medication.

I’ll just… Yeah, I’ve just put a few things down such as… My kidney function was not working well while I was in hospital. And I suffer with diabetes, so those two things will have an effect on my body. So that was another reason why they wouldn’t send me home. Eventually they gave me something to be able to cope with that situation. The tiredness, like I said, is still there. Brain fog and doing things, you know, and forgetting…set off to do something and forget where you’re going and then have to come back and relay your thoughts to… Yeah, I’ve got to go and do that. That’s a thing that occurs all the time, unfortunately.

Can you say a bit more about the brain fog?

Yeah. I may go in the kitchen even and go to get something and I’ll go in the wrong cupboard or forget why I was going into that cupboard. Right silly things sometimes. And then when you’re going to start to make a conversation and then it completely goes, and you have to sit for quite a while before you could think about it and start explaining yourself again. And it doesn’t make sense, you know, because you think I was fine before all this, you know, where’s it all gone to.

And unfortunately, like, my mother has dementia. And so, it’s been tough while I’ve been like this. I do still go round but my wife has taken over the lead of that and looking after her, due to the fact that, obviously, I can’t get out like I used to. And I suppose the memory thing, the brain fog, it comes and goes, shall we say. It's not there all the time. And I think you’ve got to just reset yourself and be a bit stronger and then you find that you can go ahead and do something.

Pete found that he was unable to do what he used to do before his ICU admission. As he was at home more often, he did more around the house.

Do you feel like Covid has affected the way you look at yourself or you think about yourself?

Sadly, yes. It’s made a different level to my situation. One, I think you try to live as you did before but it’s in a totally different way. You have to do things totally differently and respect your body a bit more. But also find out that you can’t do what you used to be able to do. So, it changes that reflection on life. Find things to do, i.e. I’m reading a book about Ranulph Fiennes, an explorer. I don’t know if you’ve heard about him. No? Well, he crossed the Antarctic on more than one occasion, on several occasions, in different formats. People like that can give you a bit of inspiration, you know.

You realise that you have to get up and carry on, is the important thing. My wife’s good for that. I can always honestly say that you know… We’re very much still in love and she’s been excellent all the way through. But we help one another as well and I tend to do a lot more in house than I did before, because I’m more confined to the house situation, rather than being out and about. So that is an important one. You do have to change your attitude towards it.