Peter & Stephanie

Brief Outline:

Peter was on in hospital with Covid for 4 months, including 3 months on the ventilator. He was then transferred to rehab at a local hospital. Stephanie was in regular contact with the hospital during Peter’s admission. Peter is now at home and both he and Stephanie are recovering from this difficult time.

Time of interview July 2021

Background:

Peter [65] is a retired fence builder. Stephanie [58] works as a nurse practitioner and site manager in hospital. Together they run a laundry service for horse rugs. They got together 8 years ago and married four months after Peter’s discharge from hospital. Ethnicity: White British.

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In September 2020, Peter started feeling unwell: walking in after attending to the stables, he experienced severe shivering for 10-15 minutes. He did a Covid test on a Monday and the positive result came back on the Thursday.

Peter lives with asthma, which is well-managed. Up until that point, he had not worried about his health. He and Stephanie had been careful. Stephanie, who works in the hospital as a nurse, worried that she had brought it home from work, but she did not have any symptoms herself and tested negative, so she quickly let go of this thought. It was the start of the second wave in the UK, and so they felt that there were many places where Peter could have contracted the virus.

Stephanie recounts that when Peter became more and more breathless, and that his respiratory rate kept going up, she urged him to call an ambulance. Peter initially did not want to, feeling frightened about what this would mean. Stephanie ultimately convinced Peter that they needed to call an ambulance. When the paramedics arrived, they decided to take him to A&E, and he was admitted to ICU almost immediately.

In hospital

Peter does not remember much about the time in hospital before he was ventilated, so he lets Stephanie fill in this blank for him. Peter was initially put on CPAP (Continuous Positive Airway Pressure), but quickly deteriorated. As he did not want to go on a ventilator, his clinicians contacted Stephanie to ask if she would talk to him to convince him. Although she felt like saying “do not put him on the ventilator”, she recalls being aware that this needed to be done. She was able to talk to Peter and he consented. Before he was ventilated, he wrote some notes should he not make it - about passwords and codes, and possessions that he wanted specific people to have, and that he loved Stephanie. Reading these notes later made it clear to Stephanie that Peter was aware of how serious the situation was, and that he was possibly not going to wake up from his coma.

After two weeks the clinical team tried to wean Peter off the ventilator, but the attempt failed. They tried again a few days later, again unsuccessfully. Meanwhile, Peter’s condition worsened: he developed multiple pulmonary emboli, sepsis, liver and kidney failure. The consultants and nurses were in touch with Stephanie about his condition via the phone. After more or less four weeks they warned Stephanie that his prognosis was very poor, and that he was unlikely to make it through the night. Peter had developed abdominal sepsis. The clinical team would have liked to send him for a CT scan to find out why he was deteriorating but found that he was too ill to send him there. They told Stephanie that if things had not improved by the morning, they would have to withdraw treatment. She would be allowed to come in to say goodbye.

Stephanie had a very difficult night with little sleep. She preferred to be on her own, despite friends and family offering to come by to support her. The next morning, she received a call. A new consultant had come on shift, who had decided that although Peter’s chances of surviving were small, they should try and get him to the CT scan, with all the risks. The scan showed that he was constipated which opened up the possibility for treatment. After an enema, Peter’s condition started to improve.

It took 11 days for Peter to regain consciousness after the sedation was stopped, and a further two weeks before he could move. During this time, Peter developed deep vein thrombosis. His kidneys were affected, and so, when the hospital needed to free beds for more severely ill patients, Peter was transferred to a hospital that had a specialised renal unit. He was transferred back after 6 days.

Stephanie describes this time as an emotional rollercoaster. She “lived on adrenaline” and “was living on a knife edge for months”. Initially, she wrote clinical details and any changes in Peter’s condition down. She found this helpful at first, but it got burdensome when Peter’s situation got critical. She finds that the details of his changed state ingrained themselves in her memory whether she wrote them down or not. She received so many calls, that it was challenging to keep up with them. She got very little sleep; the stress was horrendous. Meanwhile, she took care of the business, the farm and the horses. The neighbours occasionally brought some food, as Stephanie found little time to feed herself. The worst thing was not being able to be with Peter. Whilst they had been able to communicate with each other before Peter was ventilated, this was not possible when he was unconscious, which made Stephanie feel lonely and afraid that he might feel she had abandoned him. She asked the nurses to let her see him on a video call. Although, as a nurse, she is used to seeing people in ICU, seeing Peter unconscious was traumatic, as was collecting his valuables when asked to, as these included the notes Peter had made before his ventilation.

What made a positive difference

Support from family and friends was helpful to Stephanie, as was her own decision to “live for the day”.

Communication with the hospital

Stephanie called the hospital around 4 times a day to get updates on how Peter was doing. The hours before calling would be filled with anxiety about what they were going to say. She found not-knowing hard to bear. Stephanie describes the ward and ICU nurses and doctors at the main hospital as excellent in their communication both technically and emotionally. They always took time to talk about Peter’s condition and looked after Stephanie’s emotions as best they could. There was a contrast with the hospital that Peter was briefly transferred to, where Stephanie had to insist to be allowed to see Peter on video. When Peter was back in the first hospital, Stephanie was impressed with the nurse who called her to ask what Peter liked, as she was spending a lot of time talking to him in the side room, and she was hoping to make sure that what she spoke about would be of interest to him.

Waking up from ventilation

Peter was on the ventilator between the end of September and the end of December 2020. Peter had various dream-like hallucinations when he was ventilated. He remembers them vividly. He does not recall waking up after ventilation. He does remember that the ward was incredibly noisy. He got very little sleep in the month after waking up. Ultimately, he was placed in a side room and given melatonin, which helped.

After Peter had woken up from the sedation, he and Stephanie were able to have a zoom call most days. Initially, having the tracheostomy made talking difficult, but as soon as this came out, this became easier. Stephanie got Peter a tablet so that he could watch TV or Netflix. Peter was in ICU for an additional week, and then on a regular ward for 1-2 more weeks.

On the recovery ward, Peter spoke to other patients. There was one patient in particular who was chatty and friendly. The two men had already briefly been lying next to each other on ICU, but now found themselves in the recovery room together and on roughly the same timeline for recovery. They did exercises together. Peter was allowed home a day later than this man. He was then referred for rehab at a local hospital.

After discharge

Stephanie found the time after discharge from hospital very challenging. She took time off work to take care of Peter. They had some adaptations done in their house, and a bed from the local hospital on loan. But as Peter could only shuffle a few steps, he was dependent on Stephanie for most tasks. Stephanie had expected more psychological issues to arise but found that Peter dealt with things with determination and without too much difficulty. Over time they discussed what had happened whilst he was in hospital, which Peter had initially not wanted to know, but was gradually wanting to learn more about – in part to learn about what things had been like for Stephanie.

Stephanie finds there are some things that stay with her. Whilst she appreciates the communication from the hospital, the whole situation has taken a toll on her, which Stephanie likens to PTSD (Post Traumatic Stress Disorder). Nevertheless, both Stephanie and Peter describe their bond strengthening through this period of care after discharge from hospital. Knowing that he can count on Stephanie this way has allowed Peter to become more secure and mild-tempered.

The follow-up from the hospital

The rehab and follow-up from the hospital was “absolutely brilliant”. The medical follow-up, however, only picked up when Stephanie alerted the GP to various issues that she felt were not getting enough attention. As the GP was not very knowledgeable about the situation, Stephanie suggested a number of things herself. On the back of this, Peter received an echo with the cardiology team, and oxygen at home (after 5 months), which immediately resolved the muscle pain he had been experiencing. Peter and Stephanie have also flagged up some issues to the occupational therapist, who is part of a larger multidisciplinary team, for Peter’s treatment but also for those who may not have the social support to flag up similar issues to their clinicians.

Life is now more limited than it used to be. Stephanie is grieving the loss of “the old Peter”, but Peter continues to take steps in his recovery and both he and Stephanie hope he will be able to regain the strength he had before his hospital stay. Both say they now have a more acute awareness of the fragility of life: one can be fit one day, and things can be altogether different the next day. The whole experience has been very impactful and incredibly significant for both of them. Partly because of it, they decided to get married, which they did in May 2021.

Going forward, Peter and Stephanie consider it helpful to meet other people in group sessions to share some experiences, and to help others who have similar experiences as well. Others could learn from them about the need to take things day by day. He advises others to have a goal for each day. Peter would like to pass on some of his motivation to others to continue working on physical recovery. For the NHS, both he and Stephanie feel that better medical follow-up is needed. Whilst they find it understandable that this has not been the case in the height of the pandemic, and they have been able to get the support they needed (although much later than would have been ideal), they point to others who may not be able to advocate for themselves in this same way.

Peter was reluctant to call for an ambulance as he was frightened and unsure what going into hospital would mean for his everyday life and work.

Stephanie: Hi, yeah so Peter started with the [inaudible] on the 11th of September of last year [2020] initially he, he was just feeling generally unwell and had a very high temperature, so we were just managing it. Just paracetamol and rest and fluids and then that, so that was on the Friday and then by the Wednesday, Tuesday night Wednesday of the following week he started to become more and more breathless. Within sort of like 24 hours I was saying, you know, look you really need to be in hospital now, his respiratory rate had gone up to sort of 35/40 a minute. He didn’t want to go he was saying no I’m not going into hospital, no, so eventually I convinced him and called for an ambulance and his temperature was 40.5 at that time when the ambulance came. Respiratory rate was about 40 so they took him into hospital, and he was transferred into intensive care almost immediately, as he said he was put onto CPAP for 12 days.

And then Stephanie you mentioned that Peter was reluctant to go to, to call the ambulance, Peter why was that?

Peter: Yeah, I think I was frightened a bit, you know, I knew we had lots of stuff to do here because we were just coming into winter and, you know, who’s gonna deal with the horses and, you know, work to do and rugs to do, horses to do, it was a nightmare.

Stephanie: Yeah, it was, it was it was hard work, but I think, I mean it was, I think a lot of it whether you want to admit it or not a lot of the time you were frightened, weren’t you?

Peter: Oh yeah, yeah

Stephanie felt entirely helpless, and jealous of staff who could be with her husband whilst he was ventilated.

And that made it [audio breaks up] for me and once they, when, as soon as they were going to sedate him to intubate him, they didn’t want any of his personal belongings there really to say they had to send them home. So, I had to go into the hospital and meet the nurse that was looking after him in the reception and she gave me a bag with all his belongings and like pyjamas and things like that and all his valuables. Going to pick those up was, that was really traumatic as well because, and especially when I got them home, you know. And I was sort of like I took his clothes out of the bag and I was thinking, you know, he night never wear these again. And those were thoughts I had and then he sort of put a little note in with the paperwork that he’d written all his passwords out and everything. And he’d put this note in telling me that he loved me and everything and it was, that was really, really emotional yeah. I was really breaking down then and knowing that what the reality could, well likely be, you know.

But the other thing is and again it sounds horrible but when this nurse came down, because it was, it was really, Peter and I do, we’re very close and we spend a lot of our time together so it, it was, I felt like I’d lost my right arm, you know. When he wasn’t there, it felt very, very much alone, in fact I said to my friends I could be, and my daughters even, I could be in a room with a million people and I still felt so alone, really, really did that’s just the way I felt it didn’t make any difference who I was with, I was alone so no-one could have helped me really. But I remember when his nurse came down and met me in reception and she was the nurse looking after him on that day. I was so jealous of her because I was thinking she’s actually getting to spend time with him and she’s with him and can see him and I can’t because I’m not allowed to and it felt, it felt so unfair, you know. And I wanted to sort of like run past her along to intensive care with him and hold his hand, but I knew obviously I couldn’t. And that was quite an overwhelming feeling really, you know, the fact that I just, somebody, another human being was preventing, or several human beings were preventing me form actually being with him. But obviously I knew why so I wouldn’t have changed it but that was really, really difficult, really difficult.

Stephanie found not having any contact with her husband and not being able to be there with him the hardest.

The worst thing was not being able to see him but obviously working in the National Health Service I, I know, I knew the reasons why I, you know, I wasn’t but that was the worst thing. Especially, I mean before he was ventilated we could contact each other and via sort of WhatsApp calls and Zoom but after he went on the ventilator obviously there was no contact whatsoever. And I’m, I always think I’m a bit of a tough cookie when emotionally but this absolutely floored me, absolutely I, I could, I wouldn’t wish it on my worst enemy, it was awful and I had all this when he, when got onto the ventilator. I was thinking I didn’t know how much awareness he may have because obviously they’d lighten the sedation on a regular basis to check the neurological signs. And I thought is he gonna think I’ve abandoned him, you know, I knew in my head that he wouldn’t but yeah I wasn’t really thinking logically at the time. So I mean I even got to the stage where I said to the, I said to the nurse I need a Zoom call. I need to see him even though he was unconscious because in my head I was thinking I don’t believe he’s still alive having been through four organ failures, sepsis etc. and that was, that was really traumatic. Really traumatic because when I actually saw, and I’m used to looking at people in intensive care on a regular basis, he actually really did look dead and it was, it was horrendous.

Unable to be with her partner in hospital, Stephanie’s life revolved around getting information.

I would say I’m mentally extremely stable under normal circumstances but I’d got to the stage where, when he was at his worst I was phoning up the hospital probably about four times a day at certain times when I knew that they weren’t quite as busy. Just to get sort of updates and when it came time for me to phone I’d, it was like got to sort of an hour or two before I’d start to get a little bit anxious because I was just dreading what they were going to say. Then to get to the stage where I was actually on the phone and the phone was ringing and I was almost having panic attacks sometimes because I was just so nervous and anxious about what they were going to say. Because there was, there was no, it was, it was a roller-coaster some days he’d be improving and they’d be saying oh yeah really stable, some improvement and he’s doing well and then the next time I’d phone he’d gone downhill again. I just never knew what, what they were going to say and that, that as horrendous to, to cope with, you know, the stress of just not knowing. And so yeah that was pretty much what my life was like then.

Stephanie got a call from doctors when Peter was really poorly, but mostly talked to nurses about technical information.

The consultants were phoning me up when he was really poorly they were phoning me up most days really, the rest of the time I would speak to the nurse looking after him on that [inaudible] the doctor would answer the phone and they would say, you know, I’d ask to speak to the nurse looking after him because I didn’t really know who’d answered the telephone and they would say oh i’ve been looking after him I’ve just seen him do you want me to give you an update or would you prefer the nurse to do it, so I was like yeah that’s fine. So, I was getting updates mainly from the nurses looking after him but also from the doctors as well. And they would, especially the nurse that knew me they would tell me technical information, you know, they were telling me things like ventilator settings and things like that on, you know, on a particular day then I sort of had a bit better idea how he was progressing and what sort of regime they were using for weaning him off the ventilator and things like that when, when, when he got to that stage. And, you know, when he did have really severe organ failure, they were telling me sort of what doses of adrenalin he was receiving, things like that. So right from the beginning the when he went into hospital he was put on CPAP immediately so they, he was only I think he was in A&E and then he was only on a ward for about 12 hours before he was transferred to intensive care so yeah they basically told me any technical details that I wanted that I asked for and actually volunteered for technical information the whole way through, the whole way through.

Occupational health of her work offered support to Stephanie, but she felt sufficiently supported by family and friends.

At work they offered me support from occupational health, but I didn’t take them up on it because the hospital I work at is an hour’s drive away and I was far too busy to, to actually do things like that. But I did get, I did get a lot of support from family and friends and from the staff in intensive care as well they were, you know, I would stay and, I built quite a rapport with them and I would stay and chat with them and sort of tell them how I felt on occasions but I think the way that I am as well I’m, I have to sort things out in my own head as well Peter will tell you he calls me motor mouth sometimes because if I’ve got a problem I just talk and talk and talk about it I’m not always bothered about somebody listening I just need to talk it through so that I can work things out in my own head. But it’s not that the support wasn’t necessarily there it’s just that I just felt that the, the support mechanisms that I had whether it was self-support or whether it was from sort of family and friends was enough, was enough for me. But I dare say that if I just needed or wanted more that it would have been available. But as I said I was offered support from Occupational Health at work but it, it would have been more stressful for me actually getting, travelling that distance and taking the time out because I was literally looking after seven horses during, in the midst of winter, took me at least half the day, so making arrangements to actually go somewhere else to get help would have actually caused me more stress. But yeah, I feel that if I hadn’t been such a tough stable person ordinarily, I think I may have, would have needed more help but I was fine, fine as I could be, nobody, unless somebody would have been able to wave a magic wand and make everything right, you know I don’t think any amount of sort of emotional, in terms of talking would have really made me any better.

As Peter could hardly walk when he came home, Stephanie slept downstairs on a mattress next to a loaned hospital bed.

Stephanie: So he came home on the 14 January, when came home he was extremely dependent on me so we had, we had a few adaptations to our house and we changed one of the rooms downstairs into a bedroom so they loaned us a hospital bed with hydraulics and I brought a single downstairs so I’d be down with him but literally, I mean as far as mobility was concerned he could literally just shuffle a few steps with a gutter frame but he, he was so totally dependent on me he had very little movement in his right arm or hand from the DVT but he showed determination the whole way through and he progressed fairly quickly had lots, he’s had lots of therapy for his for his arm and his hand and he’s got full movement of his arm now and his hand is more or less back to normal. Its just strength wise he’s not as strong as he was and it’s just the strength in his hand now that need to come back. So, I mean I, I was sort of prepared for a lot of psychological issues but to be honest you’ve not been too bad, have you?

Peter: No.

Peter and Stephanie invested in togetherness after having spent so much time apart.

Stephanie: Obviously when he came home, I did take some time off, but he was very dependent, and we were offered help, but I preferred to look after him myself and I think you’d probably preferred that as well.

Peter: Yeah I mean nurses in the hospital were all a bit… but it’s nothing like with your partner, you’ve got that togetherness haven’t you and, you know, you haven’t got every Tom, Dick and Harry looking after you and it’s, I think it’s important that you get that bond back again with your partner rather than just, you know, saying to the nurse can I have a bed pan please and them looking after you.

Stephanie: So, it was, I mean I can’t pretend it was easy, but I was just glad to have him back and I just wanted to spend time with him because, you know, obviously we’d been apart for so long while he was in hospital.

Stephanie felt that the medical follow-up had been poor, and that this resulted in unnecessary pain and discomfort for Peter.

I think as far as follow ups been concerned as far as follow ups have been concerned that was, it was absolutely brilliant rehab as far as his hand has been concerned has been very, very good my only disappointment has been the medical follow up which has been extremely poor. Whilst he was in hospital, I honestly cannot fault the care that he received really can’t but after, he’d been home for about a month and he’d had not heard from the GP we’d not heard from the hospital, no medical follow up whatsoever, so I actually took him to the GP his ankles were really swollen and he was improving but obviously he was still very symptomatic in one way or another. So I actually took him to the GP who wasn’t very knowledgeable about the whole situation and sort of said well, you know, do you think we should be given this, that and the other so the follow up is probably maybe only because I’d taken him to that GP appointment and suggested different things and at that it was sort of like a bit of a chain reaction and then because I’d said well I think we should do an echo then from on the back of the results if that, you know, he had the follow up she’s got a cardiology follow up now and he’s actually on home oxygen now just PRN which he’s not had to use that much but there’s [audio cuts out] came after he’d been home form hospital for five months and so, you know, although I haven’t complained because obviously the health service have saved his life and I’m under no illusions that that’s that case but it’s things like the home oxygen assessment, that should have been done in my mind on discharge from hospital, not five months afterwards. And he was suffering from a lot of muscle pain in the months after he was discharged from hospital and as soon as he started on the oxygen therapy that went completely, so you know, there’s, there are a few issues that I think probably could have been ironed out, you know and luckily the occupational therapists that are doing his hand therapy she belongs to part of a multidisciplinary group a Covid follow up group so she’s been feeding back all the all the information that I’ve been giving her and as I said to her it’s not a complaint it’s the fact that it may help other people that are not in the situation where they’ve got somebody that works in healthcare within with them that can push things forward so hopefully that will help. So yeah, that’s about where we’re up to at the minutes I think, as I say there are other things that have cropped up and other issues along the way but that’s basically it in a nutshell because it’s quite prolonged [laughter].

Peter’s hospitalisation took an emotional toll on Stephanie. She needed time to come to terms with ‘losing the old Peter’ and their life together as it was.

I think even after he came home it was, felt like Peter psychologically, I mean I’d read about all the psychological effects, after effects that Covid can have on patients so I was sort of like expecting him to be, you know, quite down and depressed and frustrated I think and angry but he hasn’t been he’s been absolutely fabulous, you know, he’s just taken everything in his stride. But me, who is normally a really tough cookie and so emotionally and mentally stable, I was just a mess and I was almost, I almost had sort of what I would probably compare to a post-traumatic stress disorder, after I would cry at anything, you know, as soon as I saw anything on television that was anything to do with Covid I’d start crying and sometimes I’d just look at Peter and cry and that is not me, you know, I’m normally so tough but it absolutely destroyed me really but I’m, I’m getting better now but I’m still quite emotional about the whole thing. Because, you know, in a way I mean I know although there’s no guarantee I’m hoping that I will get the old Peter back at some stage in terms of, you know, I mean he’s back with me mentally and physically, you know, as well and but they didn’t guarantee us that I’ve accepted that I’m just, you know, we’re both just hope that in time he will be as strong as he used to be able to do the things he used to be able to do. But it’s also been a sort of a bit of a breathing process for me losing the old Peter and everything that our life was together because obviously the things, our life now is more [inaudible] than it used to be, you know, in many ways, I mean just things like, you know, people were saying to us oh are you gonna go for a honeymoon and we weren’t particularly avid holiday makers anyway but never the less, you know, I don’t think Peter at this stage could manage to go on holiday because, you know, he just gets tired easily and, you know, breathless and I think it would be too much, so it’s just little things like that, you know.

Peter initially did not want to know what happened. When he did, Stephanie told him over time.

Stephanie: But I remember also as well when you’re sort of asking Peter how, how he felt afterwards I can remember saying to him after he’d regained consciousness I’m not really gonna tell you anything about what’s happened to you yet but when you come home I’ll tell you everything in minute detail and at the time he said I don’t really think I want to know but since then I’ve told him, I said I’d tell him in little bits and since then you know everything now don’t you?

Peter: More or less, yeah

Stephanie: He knows almost everything now but at the time when, when he first came home from hospital, I think he, he just didn’t, he didn’t want to know what had happened

Peter: I think that was a time when I was just glad to be alive I didn’t want to be taken back with all the nitty gritty details I just wanted to start moving on, you know, that had gone, stuff it, that had gone I don’t want to know about that I just want to know what’s coming tomorrow and the day after, but then since, since I was getting better you know, I, told me little bits, bits and bobs, now I think I know everything.

Stephanie: I think you needed to understand what …

Peter: Yeah it’s like, like a learning curve, like a new born baby it’s like, you know, you’re just growing again and learning [cutting out] I mean in your life I see [cutting out]

And did you want to know at any point, or did it just happen?

Peter: Sorry?

Did you want to know at any point?

Peter: Oh yeah I definitely wanted to know more and more and more [cutting out] to know what Steph ’s… really definitely [cutting out] you know, because I can think, well I was in hospital [cutting out] and she was on her own for five months, you know, but then to know what I went through I can appreciate what she went through and it’s important I think to talk about these things and find out where everybody was at that particular time, you know, it’s like it was just a simple fact that you needed, or I needed to know where Steph was when I was going through and… me going through that although I can’t remember much apart from these bloody dreams [laughter] yes.