Wendy

Brief Outline:

Wendy has Interstitial Lung Disease (ILD), which led her to be particularly careful not to contract Covid. However, in late December 2020, she fell ill, leading to a 3-week hospital admission, including nine days in ICU. Wendy was recovering at home at the time of interview. Interviewed for the study in April 2021.

Background:

Wendy lives with her husband, and, temporarily, with her daughter and her partner, and their two children. Wendy used to work as an outings day service manager for people with dementia, but has decided to retire early following her admission to ICU with Covid.

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Living setup pre-onset/Vulnerability

When the pandemic started, Wendy – who lives with Interstitial Lung Disease (ILD), classed as an underlying condition that heightened her risk of a serious course of a Covid 19 infection – moved into the caravan in the garden of her house. She lives together with her husband, and temporarily with her daughter (one of her two children), her partner and their two children whilst they save up for a larger place to live in. Wendy describes the extended family house as a blessing; her son in law worked from home when she was just discharged from hospital, which was really helpful, and she enjoys spending time with her grandchildren aged 2 and 7. She finds it hard not to be able to spend the same amount of time and share the physical closeness with her other grandchild - who lives just around the corner - due to continuing social distancing measures. She has also been unable to visit her mother (aged 92) – they arranged a phone for her, and she has now mastered WhatsApp so they can be in touch.

Friends of Wendy’s daughter, doctors and senior nurses, recommended the plan for her to live in the caravan, in light of her ILD – and so she did. It meant that she was able to physically distance and yet be close to her husband and daughter, with whom she shared dinners, fireside chats and drinks at a distance. To bide the time – having been furloughed, and being alone in the caravan – Wendy took a FutureLearn course on Covid 19, as she had previously done with dementia (the field she worked in as a Dementia outings day service manager). She also did various little videos from her caravan, to entertain and keep in touch with friends and family. When the lockdown ended, Wendy ‘moved back’ into her home.

For the second lockdown, she and her husband decided not to live with the same arrangement. It was simply too cold to live in the caravan, so she stayed in the house, and they socially distanced as well as they could. This was especially so when her daughter fell ill. Despite their efforts, both Wendy and her husband fell ill shortly after. Wendy believes her daughter did not pass it on to her, but she may have contracted Covid by going to the shop, and did not want to speculate. When the family got tested, all tests came back positive, except for her son in law’s, who nevertheless had symptoms too.

Onset

Wendy felt ill, very tired; she had a cough and a temperature, although she did not measure it. Four days after the first symptoms she was unable to breathe, and her husband called the ambulance. She was taken to hospital, where the clinical staff did a number of tests. Wendy recalls the staff being really kind and helpful. She was admitted to a ward and given dexamethasone. Within 24 hours she felt better. On Christmas Eve she was discharged home.

On the evening of Christmas, after having some dinner cooked by her daughter despite not having an appetite and feeling particularly unwell, Wendy went to sleep. The next thing she remembers is waking up on the 27th, unable to breathe. Again, her husband called an ambulance.

To some degree, her ILD prepared Wendy for her Covid experience: she knew how to control her breathing, to make it deeper and to stay calm. She also says she realised how much she actually knows – mostly through the interactions with clinicians, particularly in ICU when she pointed out that her oxygen and gas exchange in her blood are never as high as they would be for others, which impacted what treatment plan they made for her, and they came to tell her it had been really helpful of her to tell them that.

The paramedics asked if Wendy would be able to walk to the ambulance, it was as a wet and windy night and would be quicker, which she did. Looking back on one of them saying “hold on”, Wendy now thinks it may have been because he felt she was not going to survive the four-minute drive to the hospital. Upon arrival at hospital, a range of staff members were waiting, which made Wendy realise “this is serious”. A&E “looked like a scene from Casualty”. Through all of it, Wendy insists, she felt well cared-for. She was not frightened as she knew she was in good hands.

Admission to ICU

Wendy was taken straight into ICU, again making her realise the severity of the situation. On admission, there was a nurse in ICU who was very attentive. Time in ICU was hard to keep track of, “Every day is like Groundhog Day”. Wendy says she “lost 5 days”, which she discovered when somebody told her she had been in ICU for 9 days. Not remembering is scary for a number of reasons; Wendy worries about what the lack of oxygen may have done to her brain. Later incidents of forgetfulness worried her as well, she was wondering if these symptoms amounted to dementia. At her request she took a cognitive test following the ICU follow up appointment, which revealed that only her recall seemed not as good, but this pointed to Covid brain fog, and would hopefully get better with time.

Treatments

Wendy was on CPAP (Continuous Positive Airway Pressure), which was uncomfortable, but it allowed her to breathe. She also received Potassium, antibiotics and fluids. The nurses regularly came to take blood. Wendy was part of the plasma trial. She does not remember being proned but she does try this at home – and it helps the breathing. At some point the staff felt they may have to intubate Wendy. She insisted that she did not want this as she felt she would not survive it. Something happened that night: she had a spiritual experience, a dream in which her father appeared – as he had years earlier – saying it was still not her time to go. After this dream, Wendy felt that she would be ok. The consultant found her condition improved from that time onwards.

Wendy was moved to another ICU ward that had just been set up to deal with the influx of patients as the ICU was overflowing. She remembers it being very cold.

Communication with others was difficult: Wendy wrote messages to her husband, which was frustrating as it sometimes took her hours. Her friends wrote her messages, she was unable to answer them and was relieved when her husband put a text on the Facebook group that she was ok. A befriended vicar works in the chaplaincy team and came to see her a number of times. It was good to see a familiar face. He told Wendy’s daughter how she had been. Whilst Wendy missed her husband, she also felt grateful that she could sleep whenever she needed to, and not stay up for visitors. Texting remained difficult – but these things felt like the things that could be controlled so were at the centre of her attention. The clinical staff called her husband every day. One time a consultant even called after a 14 hour shift.

Moving to the ward. Wendy remembers being moved from ICU from the ward. Whilst ICU had been “100% attention” it took some time adjusting to that being different on the ward, where she frequently had to wait for support for things like getting water and going to the loo. The open window by her bed was an asset. Regaining some independence was equally positive. There were other patients in the ward, who had also had Covid, and there was a sense of camaraderie there, although it was not always easy: there was one lady who did not understand everything and who was confused, and Wendy tried to help her where she could. Wendy received treatment from occupational therapists (OTs) and physios who were helping her to walk longer stretches, and to do various exercises.

Discharge home. Wendy was discharged early, in mid-January 2021, as the hospital needed the beds for incoming patients from London, where the pandemic was particularly severe at that point. It meant that she went home without having passed the stair-test, which the physiotherapist was not happy about. Initially, Wendy found herself crying frequently and having difficulty stringing sentences together. Everyday tasks such as taking a shower and washing hair were an enormous undertaking. Wendy received support from a nurse at first (taking bloods), then from a physio (supporting her with exercises) until her oxygen levels were back up.

Wendy still finds it difficult sometimes to delineate which of the symptoms are to do with Covid, and which are caused by something else. Wendy talks to her husband about what they have gone through. At the same time, Wendy feels that for him talking about Covid could be a painful reminder of what could have gone wrong. Wendy is still ‘piecing the story together’ through talking about what happened to her. She feels that a visit to the ICU may help in this, and the interview has been part of this process as well.

When asked what has been most helpful in her recovery, Wendy tells me it was her family. Her daughter has been cooking meals; they have been very supportive. Her faith has been a big support for her as well – people have been praying for her whilst she was in hospital, which she could sense, and which has helped her. She feels blessed with the many close friends around her.

Wendy does not feel that she has regained the level of health back that she had before her hospital admission. The fatigue remains, as well as the brain fog, which is worse when she is less well-rested. When she lamented the slow pace of her recovery to her clinicians, however, they reminded her of how much progress she has made since February and just how poorly she has been. Wendy says her outlook on life changed – she has a bigger appreciation for the small things, which she hopes she will be able to hold on to over time. She has also decided to retire earlier than planned. In the near future she hopes to be back in the sea – paddling boarding, swimming and – on a walk on the Sussex Downs, through which she seeks to raise funds for ILD awareness.

Message to others. Wendy remembers finding it hard to call the ambulance initially, from the awareness that they are busy and the wish not to bother anyone. She wonders whether, had she called in earlier, she may not have had to go to ICU. She wants other people to know that they should call the health services when they feel that they are getting worse.

Wendy is grateful for the clinicians for having done what they did, and she would like to see them again in real life to tell them that.

Wendy moved into a caravan in her back garden for three months in the late spring of 2020 to minimise the risk of infection from her partner.

So, my daughter’s got a couple of friends who are nurses and doctors and all sorts, well, lots…she’s got a lot of medic friends. And one of them in particular she sort of spoke to and said, we’re thinking about putting Mum out in the caravan while this is going on because dad’s still working, I’m still working. And [Son-in-law] was working from home already because his company just said, right, don’t come in, work from home, you know, nobody’s to come in. So, this friend texted her back and said, yeah, great idea, get her out there as soon as you can because this thing is lethal, you know, our hospitals are filling up.

So, we sort of made the…so when we locked down on the 23rd, that weekend we were clearing out the caravan and getting it all ready, and so I moved out there. I did go out every day and I spoke to my nurse, I said, look, if I just have to stay in here, I will go insane. I walk my dog every day. She said, that’s fine, she said, as long as you socially distance with your husband or your daughter or whoever you go with, she said, that’s fine. And, she said, you need to do that for exercise anyway for your lungs. So, I said, right, great. So, I would walk every single day.

And they would cook my meal for me, my evening meal. I’d sort myself out for breakfast and lunch and the one good thing about being in the caravan was I had hot toast every morning because there was no interruptions and nobody said, ooh have you got the kettle on, make me a cup of tea. So, yeah, so it was…when I look back on it, it was good in the way that I found that I was okay. The days I had a complete and utter meltdown was when any of the technology didn’t work and then I would just go, oh my goodness, oh my goodness, I can’t be out here all evening without… It’s too quiet, you know, even though we’ve got an A27 going past us. So [Husband], my husband would come out and he’d fix things and, you know, but they’d all find a way of getting it sorted out for me. So that was good.

Wendy had a temperature and her breathing was laboured.

So, I was feeling really…just really, really tired, a really heavy cough, shivery. And then I don’t normally get a temperature, but I was conscious of feeling warm. And I think I said to my husband, I said, ooh I feel really cold. And he said, no, you’re absolutely boiling. I didn’t actually take my temperature at that time, don’t know why, probably just both felt too ill to do it. And then it wasn’t till the ambulance came that we found out how high my temperature was. And it must’ve been like that for a good two or three days…or probably two days, sorry. And yeah, just really, I’ve never felt so ill in my life, and I’ve had quite a few different things happen in my life and, no, never felt so awful.

It was just, oh golly, just…you’re just drained. It takes every ounce out of energy out of you; even to get out of bed and to go to the loo was like climbing a mountain. You just felt everything aches, you know, your legs ache, your arms ache, everything feels heavy. And I had this really heavy, heavy feeling in my chest, particularly on my right side, it felt like somebody was sat on it.

And I did remember that from when I had my lung condition a few years ago. And I think that’s what alerted me slightly, I thought, oh this isn’t right. And then my breathing…this is, like, the night before I actually went into hospital, my breathing was very drawn and noisy, so it was like a gasp every single time and like a grunt. And my husband said, is that grunting making you feel better? I said, I’m not even conscious of doing it, I said, am I grunting? He said, yeah. I said, oh I didn’t know. And then I sort of went back to sleep and apparently was still doing this [non verbal speech] when I was asleep, which I found out later was the lungs trying to work harder to get the air in.

Despite efforts to stay separate, Wendy caught Covid after her daughter. Wendy’s nurse said to tell her not to feel guilty.

So, all the way at the beginning, so you said you started feeling ill on 18th December, and your daughter had already been ill.

Yeah.

What did it look like for her?

Sorry?

What did her illness look like?

Well, she had a cough and a high temperature. She just kept herself away because she knew I was vulnerable, she just moved in…so she just stayed in her bedroom for about a week. And, you know, if we were in the same sort of area, we managed to socially distance. So, you know, just sort of, like, I’m coming down. Okay, I’ll get out the way. You know, and the windows open and all that sort of thing. But the whole house…we all had it, we all…it went through the house like a storm so, you know, it was unavoidable really.

And when I spoke to my ILD (Interstitial Lung Disease) nurse and sort of…because my daughter felt really guilty, and when I spoke to her and said to her, you know, my daughter’s consumed with guilt because I’ve got it and she had it, she said, tell her not to worry. She said, did you nip out to the supermarket? And I said, yeah, I’m afraid I did. Because it was coming up to Christmas and I knew I wanted to get the grandchildren some toys and there was a toy sale on at our local supermarket. So, I thought, oh I’ll nip over there, you know, it’s not going to do any harm. And then, you know, four or five days later, boom. So, and [Daughter] was well and truly over her Covid by the time I had it. So, yeah, I don't think there was a connection personally but…yeah, so, yes.

Wendy called an ambulance when she was struggling to breathe.

And I did remember that from when I had my lung condition a few years ago. And I think that’s what alerted me slightly, I thought, oh this isn’t right. And then my breathing…this is, like, the night before I actually went into hospital, my breathing was very drawn and noisy, so it was like a gasp every single time and like a grunt. And my husband said, is that grunting making you feel better? I said, I’m not even conscious of doing it, I said, am I grunting? He said, yeah. I said, oh I didn’t know. And then I sort of went back to sleep and apparently was still doing this [non verbal speech] when I was asleep, which I found out later was the lungs trying to work harder to get the air in.

And then I think I got to the stage on the night that we called the ambulance where I just thought…this heaviness was getting worse and worse and I just thought, I can’t get a proper breath, I can’t. And I couldn’t…I just couldn’t breathe properly. And it wasn’t just a case of… I’ve had that with chest infections in the past where you can’t breathe properly but you can breathe. And this just felt like I can’t get enough air in. So that’s when I said to my husband, you’re going to have to call the ambulance. And yeah, and that was more uncomfortable than it was scary, it was just…it was painful, yeah, it was.

So, and then when the ambulance people came, like, I had to speak to the lady on the phone first and she just said, put me straight back to your husband to save your breath, actually I can hear how ill you are. Yeah, I could just about get a word out and then I had to take a gasp and get another word out. So yeah, actually speaking to you now, I realise just how poorly I was. My consultant and my nurse had both said to me, you have no idea how ill you’ve been, when I was complaining about not making a quick recovery, and of course, that all does take time. And recalling it to you, yeah, is really making me realise just how poorly I was really, yeah. Never been so ill in my life, yeah, just horrible.

Wendy spent three days in hospital and was then discharged. Three days later, she was re-admitted.

I wasn’t feeling very well on 17th…18th December and my daughter had already had Covid a couple of weeks before, so it was suggested that I went and got a test done. So, I went down to our local town and got that done and that came back as positive. And I didn’t feel too bad initially and then within 24 hours I started to feel very poorly.

And then by the Monday I had to go to hospital because I couldn’t…I had to get an ambulance out because I couldn’t breathe. I have an underlying health problem which is an interstitial lung disease so I knew that they would be affected. So, the ambulance came out and they did all the checks and they said, no, you’ve got to go in. So, I went in, and I was in for three…four days and I came home Christmas Eve. And I felt…I thought it was over because I felt much better. I’d been given various drugs while I was in hospital, but I didn’t go to ICU at that stage.

Then Christmas Day, by the end of Christmas Day, I felt absolutely so ill. So, I went to bed and then the next thing I knew it was…so that was the 25th, the next thing I knew it was 27th December and I woke up not being able to breathe. I kept on having this, like, very heavy feeling on my chest. And again, it was four o’clock in the morning and I got my husband to phone the ambulance and they came out and I was blue-lighted in that time. And my sats were very low, my breathing was horrendous so… and when I got to A&E it was like a scene from Casualty, there were all these nurses and doctors waiting, a bed with all tubes and everything, so [non verbal speech].

So, I was taken straight to resus, and I don’t really remember a huge amount about it. The things I remember are the funny things like the doctor apologised for having to take my nail varnish off, which I’d painstakingly done Christmas Eve so that I’d look nice for Christmas Day. And we had a discussion about…and I said it was vanity, and then we had a discussion about, no, it’s standards. But he was so kind just by doing that, and it was an icebreaker and it made me feel more confident for where I was. A lot of people have said, were you frightened, and at no stage was I frightened because I just felt everybody made me feel so at home, if you see what I mean, and so safe.

Wendy could feel the love that was sent to her through prayers.

And, at some point, you mentioned that, that faith has played a role for you in helping your recovery?

Oh, definitely, I’ve got a very strong faith, and I have done for years. So, yeah, yes, so I’ve lots of friends praying for me and lots of, even, you know, my son-in-law’s parents are Christians and they had their church praying for me; and, I had about four churches locally praying for me, as well as my friends and family who are that way inclined, shall we say. So, yes, so that…and…and I know when I laid in ICU I was getting all these wonderful texts and, you know, just heard what happened, you know, and sending you our love and, or praying for you, or whatever it might be. But it was really tangible. You could…I know it sounds ridiculous but, you could really feel that love. You could really feel it and, yeah, you know, I feel quite emotional now, I felt really blessed to have the people around me that I have around me.

Wendy was discharged early which meant she had not received the physiotherapy that would have enabled her to go up the stairs in her home.

How did you feel about leaving the hospital?

How did I?

Feel about leaving the hospital?

Oh no, I was quite happy to do that, yeah, no, I was happy to get home, yeah, very happy to get home. The one thing I didn’t do before I left hospital, because what happened was, there was a whole influx from Kent and London coming in so anybody that was okayish was sent home, but I hadn’t done any of the physio that you do before you leave hospital. And I know the physio was really quite cross about it because I’d seen her on the Friday and she said, right, I’ll see you Monday and then we’ll start doing a bit more walking with you and a few more stairs…and we’ll start the stairs. And I knew that you can’t go home until you’ve done the stairs because of previous things. And so, on the Sunday when they said, is there anybody at home, I said, yes. Can anybody come and pick you up? Yes. Right, you’re going to go home this afternoon then. Fabulous, you know, I thought, great.

And then I got a phone call from the physio on the Monday to say…you know, she was a bit upset that that had happened because I hadn’t done all the things that I should’ve done. And I’d only been off of oxygen for 18 hours so she was a little bit concerned about that. I was okay and then in the end the oxygen got installed here anyway because I did need that to keep me…stop it going so low.

So, on the Sunday when I got home, of course I had to go up…we’ve got stairs, I had to go up the stairs. Well, it nearly killed me. I got halfway up and just I was like [non verbal speech] like this, I couldn’t breathe. And I got to the top of the stairs and, you know, I said to my husband, just get me a drink of water. I had a drink of water and I had to just sit on the bed. And again, you know, it’s the breathing things that I’ve been taught through my ILD (Interstitial Lung Disease). So, it’s just sort of sit down, you know, use your diaphragm to get it all calmed down and breathe in and breathe out. And just had to sit there then for a good ten minutes just to get my breath back, and that was scary, that was scary.

And so, then I made sure that I had a bag so that anything I needed I just took downstairs so that I didn’t have to go up and down the stairs in the day. And then [name] when I started to get better, that became one of my exercises to go the stairs two or three times a day to help with my fitness. And now I can almost run up the stairs so that’s not quite so much of an issue. But that was a shock; that was a huge shock. I mean, I didn’t even think about, you know, I got home at about four o’clock, didn’t go to bed till about half past ten and it didn’t hit me until actually went to go up the stairs. So yeah, that was a bit of a, ooh how am I going to do this?

Wendy’s previous experience with Interstitial Lung Disease (ILD) had taught her how to deal with breathlessness, which helped her after her discharge from hospital with Covid.

And I got a perching stool for the kitchen and a shower stool for the shower, because that was the other thing, I…if I had a shower I had to go back to bed for an hour – it absolutely wore me out. So, and that went on for quite a little while, having to sit down after a shower, yeah.

But that again was the same when I had my ILD so I knew that that would pass eventually, and I knew what to do. I knew to, if I was going to wash my hair, have the shower – and I didn’t have the stool at that stage; yes, I did – get out of the shower, sit down for ten minutes. Go back in and then wash your hair, because to try and do the whole thing in one action was just too much. So, yeah, but eventually, like now, I’ve still got the stool, still have to sit on the stool but I can do the whole lot now and I haven’t got any oxygen either. So, things are improving, and they do, and they will, you know, yeah.

That’s how you notice the progress, yeah, in those little things, isn’t it?

Yeah, because my consultant was very canny when I spoke to him on Monday and I said, oh, you know, this recovery it’s taking so long. He said, okay, just go back to February. I said, yeah. He said, so how were you then, he said, the same as you are now? He’s so clever. And I went, oh, no no. I said, no, because I’m not on… And my nurse was there, and she went, you’re not on the oxygen now either whereas you were then. I said, exactly. And I looked at them both and went, yeah okay, point made. Because it is, it is just a matter and, you know, when you look back… I mean, I couldn’t have sat here and spoke to you for this length of time because (a) I would’ve been too tired and (b) I just couldn’t have done it with that fluency. So, yeah, so they were very clever.

Wendy found it hard to motivate herself for exercises, but tried to do them anyway.

So, compared to when you came out of the hospital how do you feel now?

Oh heaps better, heaps better, yeah. And my problem is, I want to be like I was pre- Covid and I’m not quite. And my nurse, she…I won’t use the expletive that she used, but we had a conversation a little while back and I phoned her and I was moaning and groaning like, you know, blargh. And I said to her, I said, ah you know, I’m just so fed up, nothing’s happening as quickly as I want it to. She said, Wendy, you have just got to be… And I went, please don’t say patient because I don’t do being patient, I just want to be better. And she said, you don’t do being patient? She said, you’re absolutely rubbish at it, she said, but that’s what it’s going to take. She said, it is a slow process but you will get there. She said, you of all people will get there, she said, because you’re determined to.

So, I make sure I walk at least once a day if not twice a day. I’ve got some exercises to do which I… I’m not very motivated on the exercises. I do want to do them; in my head, oh yeah, yeah, yeah, and then something will happen and I get distracted. But I’ve got in my phone now a reminder, Exercises, so I shall be doing those, yeah.

So, do you feel you’re back to the same level of health as you were?

No, nowhere near, nowhere near, no. And that I find really frustrating because in my head I’m thinking, right, go and do this, go and do that. And then when I come to physically do it, I’m just shattered, I just get so tired so quickly. So, like yesterday I thought, oh I’ll do a bit of hovering, and I did the hoovering and I had to sit down for ten minutes, you know. So, which in some ways if I’m having a bad day with the ILD I would have to do that anyway, but no, I’m not…no, not yet. And the brain fog is still there and I hate that, absolutely hate it. So, I’m doing Scrabble and I’m doing all sorts of stuff to try and get the grey matter going, yeah.