Deborah

Age at interview: 54

Brief Outline:

Shaun was diagnosed with and treated for blood cancer in 2019. When Deborah and her son contracted Covid in March 2020, they were particularly careful about physical separation from him within their home. Shaun fell ill nevertheless and went on to become critically ill. He survived with six weeks of intensive care treatment. Interviewed for the study in March 2021.

Background:

Deborah works as a finance manager. Deborah and Shaun aged 54 have two adult children. White British.

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Onset

Deborah’s husband Shaun was told his immune system was compromised following blood cancer diagnosis and treatment in 2019. When she fell ill with Covid in March 2020, she and her son took care to stay separate from Shaun, so that he would not contract it as well. After two weeks, when having dinner together, he said that he could not taste the chicken. Shaun took to bed for two weeks. He had a cough and felt rough.

In early April, Shaun’s cough had got worse, and he started to spike a temperature. They called an ambulance. He was given the option to go to hospital (as going in was deemed risky because of his cancer having been so recent); because he was feeling so poorly, he chose to go in.

Shaun’s time on the ward

In hospital Shaun was tested, which confirmed that he was Covid positive. He was admitted to a regular Covid ward and administered oxygen. He was also enrolled in the RECOVERY trial. For a week or so his condition fluctuated. Just after he had let Deborah know that he had started to feel better, he suddenly did not respond to texts and calls anymore. When Deborah called the ward, they said that Shaun was struggling and may need more help. That evening, a consultant assessed Shaun, concluding that it would be best to place him on a CPAP mask, for which he needed to be transferred to ICU. Deborah and her children were contacted by the ICU consultant to explain what a CPAP (Continuous Positive Airway Pressure) machine was. Deborah’s daughter dialled in too so she could listen in and ask questions.

Shaun’s time on ICU/Family visits

On ICU Shaun’s condition seemed to be stable whilst he was on CPAP and he had been given the RECOVERY trial drug Tocilizumab. Yet, when he had all three doses he was allowed to have, the issues started resurfacing. Deborah found the mention of ventilation really upsetting. When the hospital called that indeed Shaun would need to be ventilated, and that this would be his last chance at survival, Deborah and her children were allowed a visit to Shaun in ICU. They wore full PPE. When they saw him, Shaun looked very tired. He told them that he needed to be on the ventilator as he did not think he could keep going without it. They told him to be strong. The doctors said they would intubate later that afternoon. Deborah felt that communication about this had been very good. The staff from the haematology team, who Deborah knew from Shaun’s earlier admission, were very supportive too.

The next day Shaun had been intubated and proned (positioned on his front to help his breathing). The clinical team wanted to turn him onto his back but were unsure at that point whether he would survive, so they asked the family to come in again. Whilst Deborah initially did not want her daughter to come so as to not expose her to Covid, the consultant advised her to come, as she felt that Shaun was not going to survive. The ICU consultant told them that they would not resuscitate Shaun if he did not respond well to being proned. This was very upsetting to hear for all involved.

The family went home. After this they were updated every day by staff via the phone. The haematology team was feeding back information as well as the ICU team. Deborah slept with her phone on loud, dreading a phone call with bad news, which fortunately never came. Deborah called the ICU every morning.

The haematologist was communicating with colleagues in Italy and learned from what they were seeing in their patients (who had fallen ill those crucial one or two weeks earlier). The doctor in charge decided to trial Shaun on a drug alongside one other patient, to see if it could help calm own his immune system.

Then Deborah got a call saying that Shaun’s lungs had collapsed, and it had not re-inflated. They were asked to come in again. They stayed for 15 or 20 minutes talking to Shaun. They brought a picture in and left that behind for him to look at when he would wake up. After that visit his vital signs suddenly started to improve, and the clinical staff started to wean Shaun off the ventilator. Shaun’s condition was still unstable, and he was said to not yet be “out of the woods”, a phrase that Deborah noted was continually used.

A brain scan showed that his brain had not been affected. Again, this news was shocking to Deborah, not because of the outcome, but rather because she had not known he was going to be taken for a brain scan; she had not considered the possibility of the brain being affected at all, as Covid had until then largely been thought of as a respiratory condition.

The clinical team fitted Shaun with a tracheotomy, which Deborah did not really understand. They explained that that way, they could wake him up further. Every day, they would let him breathe by himself – at first half an hour, then an hour, and then two hours a day. Eventually, he could breathe on his own. Unfortunately, he was sick and needed antibiotics to get over the infection that may have resulted from some sputum going back into his lungs through the tracheostomy. The antibiotics worked, but then Shaun got MRSA (a hospital acquired infection) as well. At this point he was suffering from delirium, and again the family was asked to come in. When they did, they brought lots of photographs to help orientate Shaun. By this time Shaun was off the ventilator and things finally took a turn for the better. Eventually Shaun was discharged from ICU and transferred onto the ward by May 2020. Shaun’s haematologist called Deborah and filmed how he was clapped out of ICU.

When Shaun left the hospital

Deborah received help from occupational therapists in preparing for Shaun’s coming home. They had ordered in all the necessary equipment. After Shaun left hospital, ICU staff were in touch with Deborah and Shaun to make sure they were managing ok. Despite this, it was a difficult and uncertain time for them: Shaun would only sleep with the light and relaxing music on; he was in pain; he was still unable to go to the toilet alone, so Deborah slept on the floor in order to wake up when he needed help. Although this has been a difficult time, Deborah was grateful that she could do something to help Shaun.

Looking back

Although it has been really tough on the family, Deborah feels it has been a success story; she has felt very supported throughout. She and Shaun had celebrated their 40th anniversary just before the interview in March 2021.

Deborah tried to keep her husband, who is immunosuppressed, separate from herself and their son when they were positive.

In 2019, my husband was diagnosed with blood cancer, and he went through six weeks of chemotherapy, R-CHOP sessions, and then by the end of the year, he’d finished his treatment, and went back to work. We were informed though, that his immune system would be slightly compromised, and as he works in [city], we thought, right, just to be careful, he went back to work, edged his way in.

And then obviously, last March, I myself contracted Covid on 16th March, my son and I got it, there’s three of us living at home. My son and I had it, and I had quite mild symptoms in the sense that, you know, I was bed-ridden for a couple of days, and then started to feel much better.

And then, we were very aware that we wanted to keep my husband separate from us, because of his issues with his immune system. And then, I recovered, and we were having supper, Sunday dinner one night, literally two weeks after I had developed the symptoms, and then my husband said, oh, I can’t taste the chicken. So, I was like, oh no, crikey. And then for about two weeks he was in bed, quite poorly, had a bad cough, felt really rough, and he just kept taking paracetamol.

And then on the 5th of April, it was a Sunday evening, his cough had got worse, and then he started to spike a temperature, and it was very high. And so, we called an ambulance, and he’d had very, very high temperatures before he started his chemo sessions for the blood cancer, so he was quite frightened and worried and knew what was going on. And then the ambulance came and gave him the option of going into hospital or not. Because obviously of his cancer ongoing, even though he’d got the all clear, we were advised that unless you’re clear for five years, I think it is, there’s a possibility of Non-Hodgkin’s lymphoma coming back, but he was in such a state, we said, no, you need to go to hospital. So, they took him to the hospital, and he was admitted, and then they tested him, and he tested positive for Covid.

Deborah initially did not understand what CPAP meant but grasped that it meant that her husband did not need mechanical ventilation, the thought of which scared her.

And then one Saturday night, I think, as my husband, we hadn’t heard from him all day, and he would normally text. And I was getting a bit worried, and we phoned the ward, and the nurses said that he was struggling a little bit, that his oxygen levels had depleted, and he needed a bit more help. And then that Saturday evening, we got a telephone call from an intensive care doctor, who had reviewed my husband and realised that he needed a lot more help with his breathing, so they wanted to put him onto a CPAP machine. But obviously they had to take him into Intensive Care to be able to administer that, which, I didn’t really know what a CPAP machine was, and I didn’t know why he had to go to Intensive Care. But the doctor said once he’s in Intensive Care, one of the doctors will call you and talk about it, which they did, and explained what the CPAP machine actually was, and how it differed to just being on a normal oxygen mask.

I remember getting a telephone call from an intensive care consultant to say that my husband was struggling, and at the moment they were going to persevere with the CPAP, because the tocilizumab that they’d given him, they could only give him three doses, he seemed to have responded quite well to that. But then obviously after the three doses, all of the issues that he was having then started to resurface again, and on this call with the ICU consultant, he said, at this moment in time, I’m comfortable that your husband is okay, he’s at a point where he doesn’t need a ventilator. And when he said ventilator, I was beside myself. I was like, oh my gosh, you know? Because at this point, it was during the first wave, all I kept on thinking, well if he’s on the CPAP, as long as they don’t mention ventilator, he’s going to be alright, he’s going to be fine.

Deborah inferred how serious things were from which type of doctor rang her.

In the Intensive Care Unit, you always knew if there was something to worry about, depending on which doctor rang you, so when the consultants would always ring you, it would be, oh my gosh, no, no. Sometimes I would come into my bedroom, ‘cause you had to always give your, I used to have to give my husband’s date of birth every time, so that would authorise them to speak to me, and sometimes I would do that, and then I would run away, so that the kids, I know it sounds very weak, so that the kids would be, mum it’s fine, come in, it’s fine, dad’s doing okay, ‘cause your brain just goes all over the place really. And you kind of think, well, you’ve got through the cancer, you’re going to get through this as well. And amazingly he did.

Deborah and her children were invited to the hospital to help her husband through the delirium he was experiencing, and later facetimed with him.

Then he got MRSA, the hospital bug as well, so they put him on another course of antibiotics. And at this point he was suffering from delirium, and I didn’t even know what delirium was, so the head nurse there who I’d known, she rang and she said, if you would like to, we’d like it if you could come in today, and she said, and bring as many photographs as you possibly can, of my husband that aren’t old photographs, of maybe a year or so ago, or two years ago, so that, you know, it wouldn’t be that he had to search his memory for anything so that everything was present. So, we did, and we started to print them all of and then we went up to the hospital, and then they allowed all three of us to go in and see him, we had to PPE up again. And when we went in, it was the first time we had seen him for weeks. He was very delirious, he couldn’t speak, ‘cause the cuff was, either down, I can’t remember what happens. He was mouthing a lot, so you couldn’t really hear what he was saying. So, we were chatting to him, I think I went in first, and when he was talking to me, he was looking above my head, and he was obviously having hallucinations, some people that he thought were behind me, and so we left all the pictures there, and then my kids went in separately to see him. But then when you put, like your hand, ‘cause I wasn’t really allowed to kiss him or anything, we had to still be careful. But, when I put my hands on his shoulders and realised quite how much weight he’d lost, and his muscles, his legs were very floppy, even though when we were there, he threw the bedclothes off and was almost trying to get out of the bed, but he couldn’t, ‘cause he was so weak.

And by this time, he was off the ventilator. And then the nurses said, the next day, or a couple of days after, you know, would you like to Facetime him again? And we did. And by this time, the delirium was settling down a little bit, and we didn’t realise, but they’d put the cuff on the trachy down so that he could actually speak, so we were all on the Facetime, ready to chat about what we were going to do, and we always made sure that we spoke one at a time, so that he wasn’t confused by a lot of noise, and then he actually spoke to us, he said, hello, and we all nearly fell on the floor, you know, we were crying, we were like pinching each other under the table, and, oh, it was unbelievable, we were so happy. And he got very tired, so they didn’t leave the cuff up too long, ‘cause you could hear that he was quite chesty, and they had to kind of remove all the gunk.

Deborah was afraid to expose her daughter to the risk of Covid in hospital, but the consultant told her to come.

And at that point, I don’t think anybody understood that Covid wasn’t just something that affected your lungs. We [started to realise that it does affect] a lot of major organs. So, when the consultant, the next day, phone us and said, look we’ve proned your husband, he’s very, very poorly, we want to turn him back onto his back within x amount of hours, we want you to come in because we really don’t think he’ll survive, at which point we went to the hospital. The consultant, the lady we’d seen the day before, ‘cause at this point my daughter was ringing, and said, I’m coming home, and I said, no you’re not, I don’t want to endanger you. And then the consultant said, well can I have your daughter’s phone number? And she spoke to her. And she told my daughter to come home, because she said, she didn’t think my husband would make it.

So, my daughter managed to get to the hospital within about 45 minutes, a family member went to pick her up.

The consultant told Deborah and her two children that if Shaun would not respond well to being turned around, they would let him go quietly.

So, my daughter managed to get to the hospital within about 45 minutes, a family member went to pick her up. And then we were all in the family room, and she said that she wanted us to go in and see my husband, just to say goodbye, at which point he was still proned at this point, they hadn’t flipped him yet. And going in was just, she warned us what we would see, that we’d see lots of beeping machines, and that my husband looked slightly puffed up around his face, but when we were there, they would explain all the machines to us, because we didn’t realise, but he had been put on dialysis for his kidneys. He had also had needles put into his neck for noradrenaline, which I knew what it was, because when my husband had sepsis the year before, and he was put in Intensive Care, they had done exactly the same thing, they’d put in a needle, that goes right the way, I think, down to near the heart, to put in noradrenaline, to make sure that the heart is supported, if the blood pressure drops too much. So, we knew what that was.

And so, when we went in to see him, he was so cold to the touch. The tips of his fingers were blue, so you could feel his circulation. And I’ve never touched a dead body, but it felt that the life had kind of already gone. And the same nurse, [name], was looking after my husband that day, and he actually gave, we were all in full PPE, and he actually gave me a hug and said, I’ll be looking after him, I’ll make sure he gets through this. He was amazing actually. And we all kind of, it sounds a bit strange, but we all kind of, do you know one potato, two potato? We all kind of put our hands on top of his on his back, and said to him, come on, you’re going to pull through this, this is, you’re strong. ‘Cause, you know, he’s quite a fit man, he liked to keep fit. I think he was also at that age, he was 54, where some men, you know what they’re like, might have a mid-life crisis, so he started to exercise a lot. And then I think, because of the cancer the year before, he always made sure that he had exercise and felt good. That was important to him.

And then we went back into the waiting room, and the ICU consultant came and sat and talked to us, and she said, look, if my husband, when they turn him back on his back, he doesn’t respond well, I think we’re just going to let him go quietly. So, I kind of said, what do you mean, let him go quietly? She said, well, you know, maybe no intervention, it wouldn’t be fair, because of the amount of, the way the body had been so affected by the Covid. And at that point my son was very, very upset and angry and said, well, if you mean you’re not going to resuscitate him, show me how to do it, and I’ll do it for you. And at which point, I think, the ICU consultant realised that we were saying, resuscitate him if it got to that point, which thank God, it didn’t, looking back in hindsight. And then we just went home, and we were just praying, we’re not religious people, but, you know, we were just asking all our friends and family just to think about him, send him positive thoughts.

Deborah and her family felt well supported by their GP, district nurses and a physiotherapist after Shaun came home. Deborah also finds it helpful that more is known now about Covid, as people thinking it is like the flu was painful.

But actually, one thing that we found is as a family, it took us a lot, I think we’re all suffering from Post-Traumatic Stress Disorder [PTSD], and it took us a long time to cope with that, and we all had help getting over that situation, which was very important.

But for my husband, he had absolutely no recollection of anything that had happened to him, apart from his dreams that he had, his hallucinations, which he would all of a sudden, every now and again, he’d be like, oh my gosh, I’ve just remembered that hallucination and what it meant. And they were unbelievable hallucinations. And I said to him, did you ever have a dream or anything about the family? And he said, no, never. But I think the only thing that struck him afterwards, was the fact that if he had passed away, he would never have known anything, and I think that took him a while to get his head around that. So, I think, you know, once the physical side of what happens, you can come to terms with a lot quicker, ‘cause you can see you’re getting better, it’s the psychological side of it. But we had great support from our GP who would ring me, and when she found out he was coming home, she was in tears on the phone to me, ‘cause she’d been so supportive towards him when he was going through is cancer, ‘cause she spotted that he had cancer, so he had all the typical signs, and she said she knew straightaway, before he even had a blood test, that there was something wrong, and it could be this, that and the other.

So, she would ring me while he was in hospital to ask me, ‘cause the communication between hospitals and the GPs, the GP only gets to know what’s going on once someone’s being discharged from hospital, so she used to ring me for an update on Shaun, and sometimes she was more emotional than me.

But we were very well supported and even, you know, when he came home because we were on lockdown, the district nurses were unbelievable and they referred him to the physios to get to get extra help, and we did actually have a community physio come out and assess him every week and help him, so yeah, I think we’ve had enough health issues for a while, to keep us going really, but we’re very lucky, he’s a lucky chap and we’re all lucky to have him. But it’s good to see that now people understand a lot more about what Covid-19 is and it’s not just flu, ‘cause I think when my husband was really, really ill, it was difficult, because we could see our neighbours, we’d recently moved, so we didn’t know very many people, but we could see some of our neighbours behaving in a way that we felt was incorrect, and it was very difficult for us because we were going through the worst trauma in the world, and yet you could see people around you, even the doctor from the Intensive Care said, I don’t know where everybody’s going, why are there people on the streets in their cars? Everyone should be at home. Do they not know what’s going on here?

After getting all the necessary equipment ready for Shaun to come home, Deborah went to pick him up. He was clapped out of the ward.

So, I think we went into the ward on the Monday, and then on the Thursday, we had all the stuff delivered that we might need, like a wheelchair and a shower chair from the hospital, the occupational therapists, they were very good, they phoned me and said, what would I need? And then I went to pick him up and they clapped him out of the ward, which, I was so emotional, a, I didn’t even press the record button, and I think I dropped my phone on the floor, ‘cause I was just, aah…and then when I saw him, oh my gosh, getting him in the car. He was a bit frightened coming home, obviously, but getting him in the car and all the bumps we were going over, and he was so frail, he’d lost 20 kilogrammes of weight. Yeah, he was skin and bone.

And when we got him home, it was 24/7 looking after him. He was so frail, he couldn’t sit down, he had bedsores, his legs were so, everything, the whole, he looked like a walking skeleton. But, we were just so pleased to have him home. It was hard, because he wanted to progress, but he was so emaciated, there was just no fat on him whatsoever.

Deborah’s husband was frightened coming home. She was pleased to have him home, but equally thankful that she could call ICU professionals with questions.

He was a bit frightened coming home, obviously, but getting him in the car and all the bumps we were going over, and he was so frail, he’d lost 20 kilograms of weight. Yeah, he was skin and bone.

And when we got him home, it was 24/7 looking after him. He was so frail, he couldn’t sit down, he had bedsores, his legs were so, everything, the whole, he looked like a walking skeleton. But we were just so pleased to have him home. It was hard, because he wanted to progress, but he was so emaciated, there was just no fat on him whatsoever.

And we had nurses come every day and check his trachy scar and then, you know, my son used to have to lift him up off the sofa, ‘cause he couldn’t physically lift himself. If he needed to go to the toilet, I had to stand behind him, because he was so frail, even getting him up off the toilet, getting him into a shower, well we didn’t shower him for a good two weeks, ‘cause he couldn’t, we just bed bathed him.

And then he was determined that he was going to walk again. He was quite traumatised in the sense that after supper, his taste was still not quite back, they were giving him build up drinks, he had to have three of those a day, as well as eating food, which I think he found very hard to start off with. But we were so elated to have him home, it didn’t matter for us, we would buy anything, because none of us were going out, so we were getting home deliveries, or some friends would be, right, what does he fancy today? And they’d just drop it off outside the house. But at nighttime, he found that very difficult, so we had to sleep with all the lights on in the bedroom. I would him to bed about sevenish, and we would turn some music on to help him relax. But then, of course, at night time he needed to go to the toilet, so in the end I ended up sleeping on the floor, and we managed to get him a urine bottle, so that at least he didn’t have to keep getting up, so if it got full, he would wake me up in the middle of the night, two or three times, but it didn’t bother me really, ‘cause at least I knew I could do something to help, after all those weeks of not helping, or doing anything, you feel like a complete waste of space, at least we felt we could help him.

And he did really well. I mean, mentally he was very low, he was very frightened. Even so much so, where he had had a nasogastric tube in when he was in hospital, he’d pulled that out, and because his body was really low, he started to get an infection in his nose. And Intensive Care were brilliant, this head nurse, she would ring us every couple of days and make sure he was alright. And then when he got this infection in his nose, I mean, I didn’t know what else to do and I was so worried. So, I rang them, and luckily, one of the intensive care doctors, spoke to me, and he said, look, don’t worry, give him paracetamol, and if it doesn’t kind of get any better, we’ll get somebody out to see him. So, even then, Intensive Care were like a phone call away, which was brilliant. And even just with something so silly with his nose, it frightened him, and it frightened me, ‘cause, you know, you’ve been through this horrific experience, and you just think, oh my gosh, you know, what else is going to happen now? But he had a lot of problems with his limbs, his shoulders in particular, where he was put in the prone position in the Intensive Care, so he had a lot of problems. He couldn’t lift his arms at all, he was getting a lot of pain down his arm, and then he was also, one thigh on one side of his body it had nerve damage, so if he put something hot on his leg, he couldn’t feel it, which was quite strange.

Deborah advised people to talk about their experiences.

And do the two of you, would you say you have a message for other people about ICU and Covid and recovery perhaps?

Yeah, it’s not always easy. But, if you get through the intensive care, to me that’s the door opening to the rest of your life, isn’t it? And recovery from any major illness is awful. I think you’ve just got to talk about it, be honest about it, say when you feel crap, when you feel bad or you’re having a bad day. My husband still does not, where he still has dreams, he has a lot of problems sleeping. So, we try everything to try and help him sleep. And then, you know, he has a lot of dreams, that sometimes he finds disturbing, but he tells me about them, we talk about it, and I think that’s the best thing.

After getting all the necessary equipment ready for Shaun to come home, Deborah went to pick him up. He was clapped out of the ward.

So, I think we went into the ward on the Monday, and then on the Thursday, we had all the stuff delivered that we might need, like a wheelchair and a shower chair from the hospital, the occupational therapists, they were very good, they phoned me and said, what would I need? And then I went to pick him up and they clapped him out of the ward, which, I was so emotional, a, I didn’t even press the record button, and I think I dropped my phone on the floor, ‘cause I was just, aah…and then when I saw him, oh my gosh, getting him in the car. He was a bit frightened coming home, obviously, but getting him in the car and all the bumps we were going over, and he was so frail, he’d lost 20 kilogrammes of weight. Yeah, he was skin and bone.

And when we got him home, it was 24/7 looking after him. He was so frail, he couldn’t sit down, he had bedsores, his legs were so, everything, the whole, he looked like a walking skeleton. But, we were just so pleased to have him home. It was hard, because he wanted to progress, but he was so emaciated, there was just no fat on him whatsoever.