Published Nov 09 2021

Not getting over it: The long, rocky road to recovery from COVID-19

Carol
Hodgson

Deputy Director, Australian and New Zealand Intensive Care Research Centre, Department of Epidemiology and Preventive Medicine

Six months after recovering from critical illness with COVID-19, one in five people in a Monash University hospital study had died, new research has found. Almost 40% of intensive care survivors had developed a new disability.

A team led by Professor Carol Hodgson studied 212 critically ill COVID patients across Australia between March and October last year. The median age was 61. They measured death, new disabilities, and return-to-work of patients admitted to intensive care.

Their important paper is now published in the journal Critical Care. It shows that 43 of the group died, and more than 70% reported persistent symptoms – shortness of breath, low strength, fatigue, headaches, and loss of smell and taste.

The new research shows that the ongoing effects from critical illness with COVID-19 are long and serious.

More than a third of the group found new problems with mobility; more than a third reported pain and cognitive impairment; more than 40% reported problems doing “usual activities”; 20% reported depression.

Here, Professor Hodgson talks to Lens about the study, and why “long COVID” is important to understand.

Your work’s focused on non-COVID intensive care patients for a long time?

For the last five years I've been working on a program of research, which is NHMRC-funded, where we've been following up intensive care survivors. With my background in physiotherapy, I’ve been much more interested in not just “Do patients survive?”, but “Do they thrive after intensive care?”.

We looked at disability including physical and psychological function, anxiety and depression, and post-traumatic stress. We also measured cognitive function, and we looked at return-to-work and health-related quality of life. We had an existing cohort of non-COVID patients who had survived ICU. When the COVID pandemic hit, we were very keen to follow up the COVID survivors to see if there was a difference in their functional recovery.

But when it first hit, no one knew anything at all about COVID

Correct. We knew very little about it. In fact, we knew nothing about it. We didn't know if there would be a vaccine. I saw an early study from an Italian research group who followed up COVID patients two months after the hospitalisation. They reported they had ongoing symptoms. And at that point in time, I thought, “They don't necessarily translate into ongoing disability; they’re symptoms, serious symptoms, but only symptoms”. But how short of breath were they? Did that actually mean they couldn't walk? What exactly did that mean in terms of their degree of disability?

So you and the team set forth to answer these questions?

I was like, “Wow!”. We need to measure this, because it’s not going to be enough just to report their symptoms. We really need to know what impact this has on their quality of life and their functioning.

So I had just finished this large cohort of critically ill patients, and I knew what level of disability occurred after critical illness normally. I was really curious whether COVID-19 would be better or worse than that. And also, to put it into perspective, we wrote a paper after swine flu, H1N1. And we found that the quality of life of survivors was actually much better than the general ICU survivors.

So, I honestly thought that COVID-19 would probably be more like H1N1, and the patients wouldn't be too bad.

It turned out to be kind of the opposite

Yes. Exactly.

How did you set it all up?

There were 274 patients who were eligible, from 30 hospitals. So we enrolled 212 of them, which doesn’t sound like many, but to be honest, Australia had done pretty well last year. When we finished collecting data, there had only been about 500 patients in ICUs. So we’ve captured outcomes on about half of the Australians who have been admitted to intensive care across Australia in 2020.

One interesting thing was that these patients were well before they had COVID-19. That's the first thing to say, compared to other ICU patients. They had very little disability before they developed COVID-19. So that’s a really important finding in itself. At six months, we found that 20% of them had died, and nearly 40% of them reported new disability as a result of COVID-19.

How do you define disability?

We use the World Health Organisation's Disability Assessment Schedule (WHODAS), a validated tool. Our team validated it in the intensive care population with our previous study. And we defined new disability as a change in the WHODAS percentage score of 10% based on the patients’ perspective of a significant change in their level of disability.

What would be an example of someone who says “Yes, it is 10%”?

It might be somebody who was able to walk a kilometre previously who can no longer walk a kilometre. Somebody who could stand for 30 minutes and can no longer stand for long periods of time.

Or another one would be somebody who can no longer learn a new task. Their cognitive function is just not quite right. Or they feel that they’ve been so emotionally affected by their illness that it’s affecting their life to enough of a degree that they’ve defined it as a disability.

What can the medical and scientific community do with this?

The first thing is to link these critically ill survivors of COVID-19 into GPs quickly. And we need to educate the GPs that they need to be screening for new disability, because a lot of this is easily missed. There’s often a real gap in identifying and managing an ongoing problem or a new disability in a COVID survivor after hospital discharge.

Then, the second thing is, we really need to be educating our GPs that they need to screen for physical function, cognitive function, and psychological function, and refer patients for further management if they have ongoing problems.

If somebody is having a problem with their mobility and their ability to walk and stand and their strength, then they might need referral to physiotherapy. Some of them have problems with their swallowing and their diet, so they might need a speech therapist or a dietician. And then the ones who have psychological problems with ongoing anxiety and depression, which is really common after COVID-19, might need referrals to psychologists.

This sounds like rehabilitation. Is that what it should be like?

It absolutely is a period of rehab for these patients. And what we know is that at six months, 40% of these critically ill patients are not better. So, that's a large number of people who have been in intensive care that need screening and potentially ongoing support. And it’s a big burden on their families, too.

So, this is something that's going to be affecting a lot more people than we realise, because it’s really not just the patients who are suffering. It will also affect the family members who are trying to support them as well.

The human side of long COVID

Sherene Magana Cruz, 51, of Hoppers Crossing in Melbourne’s west, was a participant in Professor Hodgson’s study. She spent a month in hospital, and 16 days in a coma. Here she explains her battle with long COVID, how it’s affected her physical and mental health, and also the effect it’s had on her family.

What happened?

I’ve been in the aged care industry for 21 years. I work as an activity assistant. This meant I was the crazy one who played games, did singalong, went on bus trips, did art and craft, and engaged residents in some form of leisure activity to stimulate physical, emotional, spiritual, social and mental wellbeing.

On Thursday, 16 July, 2020, we had our first positive case of COVID-19 in the workplace, which resulted in an immediate lockdown. I worked longer hours, and probably had to change my PPE well over 100 times in a day.

I was tested on the Saturday, and my results came back negative on Monday morning, but by Monday night I was exhausted, and started to feel the symptoms of what seemed like a chest cold.

Thursday came, and I decided to go get tested again, and drove myself to a testing site. Friday came, and I couldn’t move from the bathroom to my bed (which is only one metre away). I fell to the floor, as my legs just couldn’t move. I called out to my son, and asked him to call the ambulance. I was taken to the Werribee Mercy Hospital, and after having a CT scan was told that my lungs were weak and I needed to be put into an induced coma.

I was so tired that I didn’t even contemplate what was about to happen. I called my husband and told him, and just said, ‘Goodbye, I love you’, and hung up.

I was transferred to the Alfred Hospital ICU, and I remained in a coma for 16 days. I woke up thinking I was at my husband’s funeral, not realising I was hallucinating.

During my coma, I had many visions, and I can tell you every one of them – but maybe another day. The one thing I can tell you is that the last vision I had before waking up was my husband, friends and sister-in-law all gowned-up to help the doctor remove the tube from my throat. They lifted me upside-down, and when they pulled the tube out I saw golden sparkles all over the floor, and I heard God’s voice saying: “Daughter, go home, your faith has done you well!”

Then I woke up.

And then you were able to leave the hospital in August 2020? What was that like, and how did you feel a week, a month, six months later?

The orderly wheeled me out to my car, I stood and embraced my husband for what seemed like the longest five minutes of my life, and we just cried with joy, relief, and thanks to God. I remember rolling the window down in the car despite the day being so windy and cold, because I just wanted to feel the wind on my face , and was so blessed to be alive and out of the trauma of near-death.

I really expected to come home to a huge banner of “Welcome home, Mum”, but I came home to three very scared, worried children who not only suffered with COVID themselves while I was in hospital, but also suffered the grief of nearly losing their mum. They weren’t sure of how I would look, feel or be. They didn’t know whether hugging me would knock me over, or whether crying would make me hurt even more. They were so strong, yet so fragile.

I came home needing to use a walking frame for quite some time, and I started to feel so embarrassed, because I felt like my residents in aged care. I had the love and support of my family and friends, yet still felt like a leper because people didn’t want to come near me in fear of either contracting COVID or making me more sick.

I was weak, but I knew I would get through this. I was advised by my husband that I was now on WorkCover. I had a terrible case manager who made me look up my own health professionals to help me with my recovery. I had no idea where to go or what to do. So I rang around and found my own physiotherapist, a myotherapist, an occupational therapist, and a psychologist. I even had to join a gym for hydrotherapy.

I was so grateful my husband was able to take me everywhere to commence my journey in recovery.

I truly felt like my body had aged 30 years. I was feeling so lonely, even though I was in a room with family around me. I didn’t know what to say at times, and still don’t, thinking, “How will this affect my family?”.

When I was in hospital, everyone locked themselves in their room and dealt with things alone, so much so that even till today they all go into the isolation of their rooms and don’t engage in much conversation at all.

I was missing work, I was missing socialisation, I was missing the ability to move without pain or discomfort. I was frustrated that things took me so long to do, when I was so much faster before.

For example, I could cook a smorgasbord of food for you within one to two hours, whereas now it takes me an hour just to prepare the ingredients for one meal. I have to sit at my dining table and do all the chopping, peeling, etc, then stand for 10-minute intervals and rest to avoid the pain.

I had inflammation in my feet, ankles, hips and shoulders. I’m still experiencing the pain in all the same places despite treatment, because just when one thing seems to look like it’s getting better, something else flares up.

I truly felt like my body had aged 30 years. I was feeling so lonely, even though I was in a room with family around me. I didn’t know what to say at times, and still don’t, thinking, “How will this affect my family?”.

Not being able to stand or walk for a long period of time means that things like shopping, walking and even dancing are either restricted or just not possible. If you only knew me, you would know that I love dancing and shopping – two of my favourite things. Now they can both be done, but limited.

I feel like the long COVID has prevented me from little things, but also big impacts like wearing shoes. I have to wear men’s runners to fit my orthotics.

I’ve struggled with asking for help, because I feel like I’m imposing on others, especially my husband and children. Sorry if I’m blabbing on, but I’m trying to tell you everything. Mentally, I’ve struggled, and I still am. There’s not one day that goes by that I don’t remember something from my coma visions and hallucinations. Different things trigger them. For example, when I go to the hydro pool, I just float, and it takes me back to my coma, where I had a new house that looked like a Malibu beach house, and I was swimming in that pool.

I’m also taken back to being treated like a mermaid and put into a tank of water in the hospital, and I had to convince them that I wasn’t a mermaid; it was just my hairy legs from being in a coma. They were really crazy visions.

I’ve noticed that the relationships I have with others have become a little more distant, and that’s not because I have changed, but because others are going through their own grief, and I’ve accepted this. I kind of feel like I don’t want to have to consistently complain or say the same story to bore them.

How are you feeling now, more than a year later?

I’m able to walk without a frame, but if I need to go anywhere I take the walking frame so I can sit in the queue. I’m still undergoing treatment for the shoulders, hip and feet. I still see my psychologist twice a week. I’ve been referred to an orthopaedic surgeon for my feet issues. I’m still having follow-ups with respiratory doctors at the Alfred. I still take longer to do things.

Every day is different because of different appointments and different moods. I can wake up sometimes on top of the world and be happy all day. Then there are days I just want to curl up and stay in bed for no reason other than I’m blank, brain-dead, and everything’s just turned to porridge. Unfortunately, our daughter, who’s 17 and currently in Year 12, became ill with mental health issues and was admitted into the Royal Children’s Hospital unit for adolescents. She was suicidal, and the trauma of COVID played a huge part in it all.

She hasn’t coped with my ill health at all. This has opened up a lot of doors to the unknown, and also feelings of guilt for putting my family in this situation and not knowing how to help.

I finally had a chance to return to work for one hour, one day a week as of September this year. I’m so grateful to be able to see the residents again, and their beautiful faces.

My workplace welcomed me with open arms, and even apologised that they weren’t beside me physically in my journey to recovery. They had trauma, too, and I really felt happy to see them.

About the Authors

Carol hodgson

Deputy Director, Australian and New Zealand Intensive Care Research Centre, Deparment of Epidemiology and Preventive Medicine

Carol leads international trials in mechanical ventilation and early mobilisation in ICU. She specialises in long-term functional outcomes following ICU and organ support. She's a senior physiotherapist in ICU at the Alfred Hospital, and is passionate about multidisciplinary research to improve patient recovery.