“I can genuinely say I was more afraid of catching Covid than I was of having a heart transplant.”
Dan
“For the first time in my life, my extended family became a threat to my survival as someone carrying Covid could still look fit and well.”
Vicky
“In the early days I was afraid to go outside... even in my own garden. I’d be torn between opening windows to keep air circulating between family members, but didn’t know the extent to which Covid was in the air outside. I quarantined from my household as I was fearful of going into same room family members had been in. I’d wait 20 minutes for air to cycle before going into room. Sometimes up to an hour if considered them to have been talking loudly.”
Erin
“Early in lockdown I lost ability to do anything normally would like reading or watching films - I just walked round in a state of shock or obsessively watched and read the news. I lived week to week - I genuinely felt like I didn’t know how long I would survive. The threat to life felt immediate and ever present.”
Anonymous
“I stopped watching the news because it was full of people with the same condition as me not getting a bed or a ventilator. Was it going to be me gasping and dying in a corridor?”
Anonymous
“Because of my condition I’ve spent my life watching people die. It’s why I appreciate life so much.”
Anonymous
“My main fear is the impact Covid could have on my transplanted organ… I’ve fought too long and hard to risk it all now. I know too well what it’s like to be chronically ill, and now that I feel better, the thought of going back to pre-transplant is an unbearable possibility. I possibly value life and health more than most, so I’m unwilling to risk it despite being shamed and belittled by narratives claiming people should just ‘be brave’.”
Anonymous
“It was being said that if you (someone CEV) caught it, it was a death sentence. My anxiety rocketed and my mental health plummeted. When shielding ended I had heart palpitations, felt sick, felt shaky, and had headaches. My anxiety is better since I’ve had counselling, and I realised I couldn’t outrun Covid. I made my peace with catching it and made a choice to trust that the vaccine would be effective. I mentally had to find some kind of normal life, and I now just do what feels safe to me.”
Melissa
“The news doesn’t help people understand. Whenever they talk about people ‘vulnerable to Covid’ they only show older people. They don’t show young people with underlying health conditions. Most people in my life didn’t know I’d had a transplant. They do now.”
Helen
“I was so worried about catching Covid, I kept checking my sense of taste using garlic.”
Anonymous
“I put pressure on myself to be grateful the situation wasn’t worse. Grateful for lockdown as it meant I could be kept safe despite isolation. I tried to enforce that gratitude but it came at a cost of suppressing sadness and stress.”
Anonymous
“The elation at vaccine development was short-lived - the news suggested only small numbers of immunocompromised people would develop antibodies… it was a crushing realisation that this might never end for people who are CEV.”
Emma
“Studies started to show that the vaccine wasn’t that effective in transplant patients because of the medications we need to stop our body rejecting our transplanted organ. The bright light at the end of the tunnel got dimmer and just became a tiny glimmer. There was the realisation it might not work. It felt like a game of Russian Roulette whether to trust it or not.”
Anonymous
“I was ok during shielding, as I felt safe and knew the rules. Once the restrictions all ended and everything opened up properly, it felt like I then had to go back into hiding as cases increased and we were left to navigate our own path through”
Jo
“2021 is actually worse than 2020. There was a sense of community protection and support created by national lockdowns… now that the world is reopening, I feel abandoned, forgotten and complete sense of hopelessness. The risk to many CEV has not changed yet the world moves on.”
Erin
“I have no faith in the government to protect us, but what worries me more is the apparent lack of empathy from some sections of society towards those at real risk from the virus. Some would seemingly prefer vulnerable people to be locked away from society indefinitely so that they don't personally have to wear a mask on a bus, or show a vaccine pass or negative LFT before going into a restaurant. I strongly feel that social media and particularly those groups and individuals who've profited from pushing Covid-scepticism and disinformation have been a toxic factor in exacerbating the pandemic.”
Dan
“I’m very angry. I’ve deleted friends on Facebook. Things like sharing posts saying Covid is nothing, photos showing them breaking the rules, showing they think vulnerable people should just be shut away. I’m not a second class citizen, other people are just lucky and take their health for granted.”
Melissa
“I feel I’m living in a semi-paused state”
Bernadette
“We spent a year and a half waiting. And we’re still waiting.”
Helen
“As a transplant recipient I’ve felt like I’ve been searching through mud for clear information about what next, especially with vaccines.”
Debra
“I did everything right, I followed advice, I took the vaccines (all three). Yet that wasn't enough. Covid-19 for me started like any other virus, and then suddenly I couldn't breathe.”
Shez
“For the first time in life you couldn’t make decisions to keep yourself safe. You were totally powerless. I was used to making educated decisions about risks to my health because I’ve always had a compromised immune system, but this was completely new and you couldn’t see it. There was an intense fear - everything felt like a risk.
The first time I went out was on the 6th May at 7am. We parked at the beach and nervously checked no one was around even though it was a huge beach. It felt like a movie.”
Vicky
“I can genuinely say I was more afraid of catching Covid than I was of having a heart transplant. I knew a heart transplant was something I needed, so was prepared to take the risk of dying during the procedure for the opportunity of a longer, better life. Covid was nothing like that - it wasn't just the risk of dying that scared me, it was the prospect of long-term, debilitating lung damage. As an active person even at the height of my heart problems, this terrified me.
Two months after my transplant, I contracted Covid (despite still effectively shielding, other than outpatient transplant clinic & GP appointments). As weak as I felt at the time, and newly immunosuppressed, I feared this would be a death sentence. Thankfully, though, I suffered only mild symptoms, and was able to see the illness through without needing hospital treatment. I am in no doubt that being double vaccinated was a huge factor in mitigating the symptoms.
While I no longer see Covid as necessarily a death sentence, I am still anxious about high cases and new variants - I have no desire for myself or any of my vulnerable family members to experience the disease again.
I have no faith in the government to protect us, but what worries me more is the apparent lack of empathy from some sections of society towards those at real risk from the virus. Some would seemingly prefer vulnerable people to be locked away from society indefinitely so that they don't personally have to wear a mask on a bus, or show a vaccine pass or negative LFT before going into a restaurant. I strongly feel that social media and particularly those groups and individuals who've profited from pushing Covid-scepticism and disinformation have been a toxic factor in exacerbating the pandemic.”
Dan
“I had my heart transplant in mid 2020 at the height of the Covid lockdown. I was in intensive care and rehabilitation for 3 months. No visitors. Only time they allowed my wife in was when they thought I wasn't going to make it. I do take care and use common sense but the government can't cater for all people otherwise the list of restrictions would be huge. I don't want that. I personally don't hide away and don't allow myself to be wrapped up in cotton wool, but by being careful of who you interact with and where you go, I get by and try to be as normal as possible.”
David
“I was off sick July 2019 before the pandemic hit due to severe Hemoptysis after a Bronscopy (I spend 10 days in hospital) and they discovered I have low oxygen sats. Shielding paused my absence and gave me a little more time (to save my wages). However due to not being able to get a lung transplant assessment appointment because of the impact of Covid and being prescribed ambulatory oxygen I never managed to return back to work as the option to work from home or redeployment were not available to me. I was dismissed due to my absence record being exhausted.
My life has changed dramatically but I am grateful I don’t have the stress of trying to socialise in Covid secure work environments, in my case school buildings, as we know the virus is still able to spread. I have minimum interactions with family and friends. I do keep myself busy with hobbies such as sewing. I’m fortunate that I’ve had a great family support system to collect supplies or I order online. I feel I’m living in a semi-paused state and mentally doing ok aware I’ve a garden and can go for walk weather permitted. I am due an appointment with the transplant team in January however I feel with Omicron this may yet again be delayed. I do feel for those forced to work due to financial constraints or those shielding without any human interactions.”
Bernadette
