Andrew

Brief Outline:

Andrew was admitted to intensive care early in the pandemic. He was mechanically ventilated for a month. He has received follow-up care from a family member when formal follow-up care was lacking. Interviewed for the study in September 2021.

Background:

Andrew works in IT Finance. He and his wife had a baby almost a year after his discharge from hospital. Ethnicity: British-Chinese.

More about me...

Onset/Symptoms

At the end of March 2020 Andrew developed a fever. At the time the Covid symptoms that were publicly communicated were to look out for a cough and shortness of breath. As he had none of these, he had some doubt that it was Covid. His fever, however, did not subside – after 10 days, he also developed shortness of breath. Even then he did not believe that the severity warranted going to hospital, as he was not gasping for air.

When things got worse/Contact with health services

Eventually Andrew called 111, who were helpful, but not particularly alarmed. As the shortness of breath became worse, Andrew called 999 who said they would send out an ambulance, but that it would take some time as his symptoms did not seem urgent. When Andrew fainted after going up the stairs his wife called 999 again and the ambulance arrived shortly after that. The paramedics measured his oxygen levels, and as they were in the high 80s, decided to take him to hospital.

Hospital admission/admission to ICU

In hospital, Andrew was taken to an area where clinical staff took Covid swabs. At the time, test results took 24 hours to come through. Meanwhile, and even when the first test results came back negative, Andrew was treated as if he had Covid as he presented with all the symptoms. An X-ray was done, and it showed the presence of blood clots around the lungs. Andrew was put on oxygen via nasal cannula, and when things got worse, given a CPAP (Continuous Positive Airway Pressure) mask. When asked what he felt and thought at the time, Andrew remembers that he felt he just needed to trust the medical professionals who were taking care of him. He felt that he was in good hands.

Andrew lives with asthma, which is well-managed. From the news he had learned that most people who did not survive hospitalisation with Covid were elderly, and although this did not give any certainties, it at least gave some hope about his personal outcome. He also remembers that the Prime Minister Boris Johnson was in intensive care around this time. He followed his progress to judge something about his own prospects of progress.

ICU Treatments and trial participation

Andrew participated in a number of clinical trials and doing so gave him hope. One of these trials was an antiviral trial that involved an IV drip. Staff was very helpful and kind. They were motivating Andrew “to keep going”.

The CPAP mask was difficult when it came to eating and drinking, as this involved taking the mask off. Andrew made some suggestions to doctors and nurses about how the mask could be improved for himself but learned that this conflicted with safety regulations.

When his oxygen levels continued to go down and the oxygen through the CPAP mask could not be increased further, Andrew felt more and more that things were no longer in his control. He tried to accept this and to follow the doctors’ advice. He found this difficult. During recovery, in contrast, he felt that there was much more scope for him to play an active role.

Communication

Andrew was in touch with his wife and friends, primarily via texts, as it was difficult to speak with the mask on. He sent a text to a number of his friends, which he recalls was difficult to type, explaining that he may require ventilation and that there was a high chance of him not waking up. When the doctor told him that they saw no other option than to intubate him following a night of dropping oxygen levels, Andrew felt that although this in theory was a decision he was asked to make, practically there was only one thing to do. He agreed to ventilation.

When Andrew was sedated the hospital’s family liaison unit kept his wife and close family informed about how he was doing. When prompted, he says ‘guilt’ is not the right word, but it is helpful to know that “while you were down … they were informed”; that there is somebody who appreciates that it is not only about the immediate patient, but also about their family.

Waking up from the ventilation

Andrew remembers waking up from the ventilation as a dream-like scenario in which he was trying to escape. He pulled out his feeding tube, after which he was fitted with mittens as a form of restraint. After this, “reality started to come back”. He did not have to wear the CPAP mask afterwards, or he cannot recall if this was the case. His muscles were weak from lying down for a whole month. To Andrew, this was also a period of “trying to work out how things work” – he experienced going to the toilet as probably one of the most degrading things, but also as a motivator for wanting to do things for himself again, to regain some dignity. Staff were amazing throughout, although the high turnover and being moved between wards meant that he could not see staff members more frequently. This changed as soon as he was moved to the high dependency ward (HDU), where he stayed for two weeks. Here, he established more of a connection with nurses. He appreciated the continuity that physiotherapy provided when he had moved between the wards, as well as staff members that came and said hello on other wards after he had been moved.

Being on HDU meant that Andrew felt that “the worst was over”, although he also had a persistent fear that things may get worse again. Being reassured by staff meant a lot, even though some of it seemed somewhat scripted to him, due to the repetitive use of the expression “you are doing well”. Andrew trusted doctors when they said he was doing better: he felt that they have seen many patients go through the same trajectory, that they must have some sort of comparison. Andrew also looked to his blood and oxygen measurements to see if he was getting better.

Andrew received support from physiotherapists. Initially they helped him with small things – like moving his feet, but eventually things progressed more quickly. He also received support with calling his wife: the family liaison team set up daily video calls with his wife and extended family. The nurses made sure he did not get too tired. Eventually he received his phone back, and was in touch with his family, and after a while also his friends, by himself.

The transfer to the ward

The transfer to the ward felt like a disconnect: staff were more limited in numbers, which caused him to feel “a little bit of anxiety”. He tried to take comfort in the fact that he would surely not have been discharged to the ward if he had not been ready for it.

He spoke a little bit to other patients on the ward, but most were very unwell. Contact with other patients consisted primarily of looking out for each other, such as getting the attention of the nurses when somebody was struggling and could not find their bell.

Leaving hospital

The transition out of hospital was “a jump” as “support dropped off immediately”. Andrew had hoped that the physiotherapy support would continue, but it did not. He describes this as a missed opportunity. The support he did receive from a physiotherapist after a substantial amount of time had passed was focused on improving his mobility. Improving his lung performance would have been much more relevant for him as this is what he continued to struggle with and what would allow him to fully recover. This made Andrew feel as if physiotherapy was tailored mostly to elderly people, allowing them to stay independent from care, rather than from supporting full recovery for younger people. Luckily, Andrew had support from his mother-in-law, a physiotherapist by training. She helped him do breathing and lung exercises, but Andrew is aware that this is not something every patient would have had access to.

After a week or so, Andrew had to return to hospital briefly after fainting at home, which turned out to be related to his medication and blood pressure. He was monitored in A&E and could then return home again.

Follow-up care

Andrew had a number of check-ups with various medical teams (respiratory, cardiology, nephrology and pharmacology) in the months after leaving hospital, the first of which was after 6 weeks. They later referred him to the Covid clinic that had just been established to follow up with patients. The appointments with different specialists often felt like they were fragmented, but also that they covered the same questions multiple times, pointing to little communication between them.

In the months after being discharged, Andrew did various exercises (reminded and supported by his wife) and went on shorter and then longer walks. He found for a long time he had no more energy and time in a day after doing this. Nevertheless, he was eager to return to work at least partially, and although the doctor said he need not yet think about a return to work as he had suffered multiple organ failure, Andrew soon picked up a few tasks that he could do from home. At the time of interview, 17 months after his initial admission to hospital, he had returned to work fully.

Looking back

Compared to how he felt when he was discharged in June or July 2020, Andrew now feels much better. He describes how he felt “better” a number of times, but after a few couple of months realised that he feels yet better. It is also hard to tell, he says, as he does not regularly engage in sport, and so there is little to tell the difference between generally not feeling very fit and having not yet fully recovered.

At this point there is not anything that he would like support with. To Andrew it is more about contributing and finding ways to give back. One way in which Andrew does this is research participation (such as this project), another is taking part in a support group when he can, to help others who have been in similar situations come to terms with what has happened.

Message for others

Andrew recalls his own fear about going to Intensive care, which he associated with him deteriorating. He wants others to know that they are going to be the most looked after in ICU: rather than their condition deteriorating per se, an ICU admission means that the care is being “stepped up”. He hopes this will help others feel more comfortable to go there, as they will have the highest likelihood of a positive outcome.

As a message to staff, Andrew feels it would be good to find a way to get to know the nursing team better. He found it helpful when a staff member from ICU came to the ward, providing some sort of continuity. He recommends this happen on a larger scale. Also, that staff were so encouraging was very helpful to

When the oxygen support could no longer be increased on the CPAP machine, Andrew’s doctors explained why they felt it would be necessary to mechanically ventilate him.

I think, yeah, it was, some of its matters, well, not matter of fact but just, you know, this is the state of affairs it’s that you’re on, you’re maxed out on the CPAP, the oxygen levels are still not in a good place, are not going up. I think this followed a night where it was, where the oxygen level did go down to quite kind of, low levels and then eventually, kind of, stabilised back up again. But it was, that, I think that was a bit of a, certainly quite a scary moment where, you know, you’re, yeah, you’re not able to breathe and they can’t really do too much about you, about it. And people just are turning up the pressure and things, and can’t remember how it got stabilised, but it eventually did. So, there was a bit of that conversation the following day to say, okay, you’re at the maximum and, yeah, if not [inaudible] we, kind of, need to give your body some help, give yourself a rest. I think that was the, captured in those kinds of terms, yeah, it’s, yeah, time to, let’s give you some help.

And then really suggest, like, taking over and put you, put you on the ventilator. Really, really that, that side of things, it wasn’t, it wasn’t much more than that. There was, I think there wasn’t that much dwelling on the fact that there’s, kind of a risk that you’re not going to, you’re not going to wake up. That l, kind of, got more from, yeah, other, kind of, news and social media less from, less from the staff, the NHS staff.

But I guess that’s, you don’t want to, at that point, you’re, kind of, they’re, kind of, thinking well if you’re not going to be on a ventilator then you’re, it’s going to get, you’re going, the prognosis is very poor you need to be, you need to be put on it. And so, they’re trying to give you as much help as much encouragement as possible. So, yeah, I think then that must have been, like, the conversation.

Andrew described the positive effects this family liaison service had on him and his family.

In some ways when you’re on a ventilator the family has the, is going through more of a worse trauma, it has a worse time of it than the patient because on the one front the patient is having a bad time of it because they’re almost dying but we’re as, we’re asleep. So, I mean, we, you can talk about that experience and, at some point which I am sure we will. But, but you’re asleep, it’s the, the family that is worrying and concerned and doesn’t know what’s happening with their loved ones and, kind of, need just, kind of, just concerned and worried about that information.

And so, I think to have some amazingly, shockingly well qualified staff manning the phones and being available and call, being able to, kind of, call back the family, I guess, on one front it stops the family, kind of, clogging up the switchboards and keeping on calling, calling back. But it gave them, I think it allows the family to, kind of, be connected and, kind of, realise that, and just know, yeah, I guess their welfare to be managed as well, and as best as we can, through the, such a traumatic period. And the staffing was amazing, I think you had, I guess, world expert surgeons manning the phones.

Maybe their specialty was in, in knees and not lungs and stuff but the, but they’re certainly, and then able to ha, give the right level of comfort and information, I think they were, they adjusted the way they interacted depending on the, I guess, the family and the questions. I guess some people wanted more qualitative, yeah, how are they doing? Other people were more interested in, well, what are, again, what are the numbers? Tell me really what’s going on. And then...

And did your wife talk to you about her contact with the family liaison?

Yeah, yeah, so that, most definitely, they were good and then actually, not only my wife and in my family as well, my broader family was able to, kind of, get the information and channel that in. And of course, everyone is connected every, and we’ve got some, some family members which are also part of the, or part of that medical profession and so to be able to have all of those questions answered as well because you can go and say, well what is this particular level? And that, and you get, have that right, that information, and it was extraordinarily helpful for the family, they, they go through that, you know, difficult, difficult time, but at least they are, you’re not wondering what’s going on you’re just, you feel as if you are, kind of, are a part of it, you can feel that you’re being looked after as best as one can. You’re being communicated to, yeah, it’s I think it was hugely helpful for the family.

Andrew’s mother-in-law is a sports physio. She helped him go through various breathing exercises when no physiotherapy was available to him.

So, transition out of hospital into the community that was certainly much more of a jump where I guess in the hospital system you certainly felt very, I guess, look after, suddenly I think...yeah, back home then I think that the support level dropped off quite a bit.

So, I think the...for me some of the biggest things was really the level of physio support, working out how to get better, because you want to get better and, of course, you're discharged enough to walk around and things but really...and you've come down with Covid so it's a lung side of things. So, you would have thought or hoped that you would have some continued physio exercises around building up lung capacity, all of that type of thing. But that didn't really happen.

So there was a little bit of handover, well, the local physio was more around mobility and I think it felt that it was more aimed at the more elderly side of the spectrum and making sure that they were just getting enough mobility that they could move around a bit and weren't...enough that they were mobile as opposed to working out how to get you back to the same level of capacity, capability that you were before.

Fortunately, my mother-in-law is a sports physio, so she was able to...we were able to go through various breathing exercises, lung exercises, which I think helped me, yeah, definitely helped me a lot and meant that my recovery and lung capacity went back very quickly. But if I didn't have that then I wouldn't be doing any exercises at home on breathing, it would all been about getting my ankles working. So, I think that was a... I felt that that was a missed opportunity.

I think at some point the system, the hospital system, did catch me again in that did get invited to...so I think when the Covid...I think had a conversation with one of the...when I came back for some checks up and then they did mention this and then they referred me to the Covid clinic at which point I could have more of these conversations. But at this point I was actually getting much better, this was a couple of months down the line and actually I'd already made big improvements so the Covid clinic probably helped less at that point than it could have if I went right at the beginning.

But I have a feeling the Covid clinics weren't really set up until afterwards because I was one of the earlier phases and then they got going for people who got sick after me.

Yes, this is definitely a feature of these very early admissions sometimes in hospital, yeah. But, yeah, nevertheless it meant that you were virtually without any support at home in the initial month?

Yeah, it was definitely, definitely the case, I think we had people come around and look at my ankles and then did these exercises and then I think that was the point it was a physio, and then the next time around was a physio's assistant.

So, I said, well, I can do these exercises, can you give me something else? And he's like, well, I can't because I'm not the physio, so I'm not allowed to give you any other exercise. Oh, okay, well, can we arrange with the physio to get on with it. And then another month or so later someone comes and so on the one front that is positive in the fact that by then I think things were improved significantly so maybe they didn't...maybe from a resource perspective it was that they use their resources well in that they didn't need to spend any time on me. But at the same time there could have been opportunities, better opportunities.