Peter and Stephanie – Experiences of intensive care with COVID-19
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.
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 ventilato, 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 adrenalin and was living on a knife edge for month. 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 da.
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 brillian. 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 Pete, 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.