When someone survives a serious illness that requires time spent in an intensive care unit (ICU), they are often told in the aftermath that they are ‘lucky to be alive'. But what if they do not feel lucky? What if they come out of that experience feeling confused, scared and convinced they will never feel like their old self again?
This is exactly what happened to Barbara Egan from Glasnevin in Dublin. In October 2005, at the age of 38, she developed what she thought was a bad head cold or flu. However, a deterioration in her condition resulted in a trip to A&E and eventually, she was diagnosed with pneumonia and sepsis.
She ended up being an inpatient in a Dublin hospital for almost one month, 13 days of which was spent in ICU ‘critically ill on a ventilator'.
"It took me over two years to feel normal again. I was told time and time again from people ‘you are so lucky to be alive', but I did not feel lucky. I felt haunted and cheated at that time," she explained.
Barbara is not critical of the care she received. In fact, she emphasises that the ICU staff saved her life and she holds them in the highest regard.
"I have nothing but gratitude and the utmost praise for the staff. They fought to keep me here and it is not their fault how I felt during and after my experience," she said.
However, how she felt became a major problem for Barbara, as did the feeling that she was the only person going through this.
"What sets an ICU patient apart from other patients is that they experience amnesia for a time. When I awoke it was difficult to understand what had happened. I did not know what was real or imagined and I was in a state of terror," she said.
She noted that the transition from ICU to a high dependency ward and then to a regular ward happened quickly - within 48 hours - and this left her feeling ‘abandoned, although clearly I was not'.
"The one-to-one care I had in ICU was understandably not available on the ward. I cannot stress how scared I was that my health would deteriorate and I may need to return to ICU. With muscle wastage I could hardly stand and it was difficult to comprehend that in such a short space of time I could be so fragile," she noted.
She said the first time she looked in the mirror at herself, she was ‘horrified' at how pale and gaunt she had become. She had lost a lot of weight and felt like a shadow of her former self.
However, Barbara points out that for her, the ‘awful effects' of her illness really began to emerge when she returned home. She has two sons, who were aged 10 and 12 at the time, and even hugging them was ‘physically painful'.
She said that her husband was ‘delighted and relieved' to have her home, ‘but was also petrified of the huge responsibility' in caring for her. And while family and friends committed themselves to help in any way, ‘they were lost at times because there was nowhere for them to turn to for advice on how best to help me'.
Barbara notes that in the first few months after her illness, her cognitive state was poor and this left her feeling anxious, confused, tearful, angry and lacking in confidence. She would forget people's names, had poor sleeping patterns and would have bad nightmares, which would leave her covered in sweat.
"This I believe was the after effects of necessary sedatives and opiates that were administered to me while I was in ICU. I had flashbacks of when I first awoke in ICU and this terrified me again and again. I could not concentrate for any length of time, for example, when I watched TV, I almost went into a trance," she said.
She also experienced physical symptoms, including reduced mobility, muscle weakness, joint pain, fatigue, thinning hair and a tingling sensation in her fingers and toes. She suffered pain in her rib cage and repeated chest infections.
Even holding a book was painful.
Barbara said that while she was traumatised, she still wanted to know about her time spent in the ICU. Her husband spoke to her about it and a friend gave her a diary which contained details about the time.
However, she was still living under a cloud of fear.
"I dreaded that I may get really ill again and perhaps die. I was distracted by the thought of how close to dying I was. I only wanted my immediate family and closest friends to be near me. I felt self-conscious around anyone else. I did not recognise this person I had become and feared I would never return to the sociable person I used to be," she explained.
Barbara, who herself is a counsellor, attending counseling for a number of months to help make sense of her experience, but she says for a time, she had to learn ‘to accept a new path, one with reduced mobility and vitality'.
When she had a bit more energy, she set herself small goals every day in an attempt to return to her full potential. She did acupuncture and reflexology for some of her pain issues and she also stared searching the internet for support from others who had been through a similar experience.
There she found a UK site, ICUSteps, which offered support to people who had been through the same. Two-and-a-half years later, she also contacted the ICU she had attended and requested a follow-up. She met the director and some of the nurses who had cared for her and while she found this overwhelming, it also represented the ‘missing piece that I needed in order to move forward'.
She became determined to set up a similar support group in Ireland, even visiting an ICUSteps support group in England. Her determination means that the first ICUSteps meeting in Dublin is set to take place in March 2015. This will be a drop-in meeting for former ICU patients, relatives and caregivers and is run on a voluntary basis by Barbara, her husband and ICU nurses.
These meetings will be held every six weeks and the idea is to match patients up with people ‘who are further down the recovery road than them', to show them that things can and do improve.
Barbara says that she now enjoys ‘excellent health' again and feels extremely lucky that she got to see her two boys ‘grow into fine young men'.
"I am aware that not everyone will return to good health as I have done, but perhaps knowing there is support and availing of that may alleviate the sense of isolation as they recover from a critical illness. No one need suffer alone," she added.
The first ICUSteps Dublin support group meeting will take place at the Croke Park Hotel in Drumcondra, Dublin, on March 11 from 7pm to 9pm. For more information, call 085 271 7281 or email firstname.lastname@example.org