Being a kidney patient during the Covid-19 pandemic
With Covid-19 numbers rising significantly, the rapid spread of the new Omicron variant and restrictions slowly coming back into force there has never been a more worrying time for kidney patients and their loved ones. In light of this, we asked members of our lay advisory group how they are feeling.
The harsh reality is beginning to set in again… I am hearing stories every day of people with Covid-19. Somebody’s husband, someone else’s son, a works party where 14 people went down with Covid-19, someone my daughter spent the weekend with. That one’s very close to home.
Of course, it’s different from the beginning of lockdown, back in March 2020. Then, for us kidney transplant recipients, catching Covid-19 could quite literally be a death sentence. I had a hospital bag permanently packed, had written letters to my daughters in case I died. I didn’t leave my flat for three months, not even for exercise, except once to go to the GP. Food parcels left outside my door.
And I’m one of the lucky ones. I’ve had my transplant for 15 years, so my kidney and I are very well acquainted. I’ve worked from home for many years, so I’m all set up with a separate workspace. I don’t need to take public transport. I get all my food delivered so I don’t have to go to a supermarket. I don’t have school age children, so I don’t have the daily worry of one of them bringing Covid-19 home with them. I’m fairly introverted, so it’s not so much of a problem not to go to the pub or to a party, and I’ve been happy to pitch up at an online meditation, yoga or art class or meet up for a breezy coffee with a sympathetic friend who understands why I won’t sit inside a café. But to be honest, it's been a long time of feeling isolated. I realise I’ve controlled my anxiety about catching Covid-19 by withdrawing from the life I had.
After ‘Freedom Day’, for immunosuppressed people, the world actually became less safe for us. Fewer people wearing masks, less social distancing. But as more and more people became vaccinated, including my own family, I was finally letting selected people back into my home, albeit with the living room patio doors wide open and chatting from a distance, not snuggled up on the sofa with one of my children like we might once have done. Nowhere near normality but some much needed steps towards it. A glimmer of hope of what life could be again.
But now there’s Omicron. Of unknown effect as yet, but we can’t take that chance. I’ve seen the latest published data which shows that (with Delta at least) kidney patients are one group who are at the highest risk of adverse effects of Covid-19. The vaccinations have made us less vulnerable than we were, but many of us have low antibody levels compared to the general population and often we don’t know personally who that is. So, we all have to be extra cautious – in case it’s us.
I’m unlikely to get my fourth dose booster before Christmas, and I can see our tentative Christmas Day plans dissolving before they are even fully formed. Can we risk getting together for a day, even with the doors wide open? Time to withdraw again, minimise contact until we know more what Omicron means for us.
Having received a transplant just after Christmas last year in the middle of lock down, I had already established that life would be an ongoing negotiation with Covid-19.
When I received ‘my call’ to head into hospital for a potential transplant from a deceased donor it was in what should have been the midst of the season’s festivities. On a night when getting a taxi at 10pm without booking should have been a laughing matter, instead the driver was pleased of the fare. I headed in alone full of panic, trepidation and hope.
Like many transplant recipients, it is often this hope that keeps us going. It is a sense that with a transplant is the chance to regain life and re-establish the levels of freedom that kidney disease had taken. It is difficult to describe the complication that Covid-19 has presented. As the world re-opened the desire to start ‘living’ again as a healthy individual was overwhelming but as was the anxiety that I was now extremely clinically vulnerable.
In the last few months, the energy needed just to overcome this anxiety and try to celebrate my gift of life has been exhausting. Recovering from major transplant surgery is hard enough but doing so under the veil of Covid-19 has been a challenge like no other.
Now with infection rates back on the rise with the newest variant threat my vulnerability hurts even more as I just feel forgotten. For all my desire to regain my life I also want to protect this incredible gift. It is not special treatment for which I ask it is just levels of consideration… consideration that actually looks like two metres not 20 centimetres, it is wearing a mask even over your nose and it is getting your vaccine when called… after all I very quickly realised that landing on the extremely clinically vulnerable list could happen to anyone at any time.
I have chronic kidney disease (CKD) and the emergence of Coronavirus (Covid-19) has meant that I have to constantly adapt to evolving guidelines and restrictions by the government and specialist team at my dialysis unit.
In the beginning, the requirement to wear face masks constantly when in public areas like the dialysis unit was met with frustration and resentment because it was uncomfortable and difficult to breathe normally. Also, having to constantly wash hands for 20 seconds and keeping social distance of two metres were daunting and felt very aggressive. Adapting to these rules had a significant impact on my mental health.
I have a three-year-old son and my wife is a General Practitioner (GP). The impact of Covid-19 for people like myself with underlying medical issues like CKD meant my relationship with my family changed and became extremely challenging. For a significant length of time, my infant child could not understand why his father could not hug and play with him when he returns from nursery. My wife and I could no longer cuddle after she returns from work without the fear of being infected with Covid-19. I lived in my own home with the fear of my family infecting me with Covid-19. The mental impact from this disease was indescribable.
However, with the introduction of the Covid-19 vaccine, the hope of returning to normality was greatly restored. Knowing that my wife was one of the first to receive the vaccine in our household was a relief. I eventually got vaccinated too and I could hold my son and play with him as I should as a father. The transformation brought around by the vaccine to people like me cannot be understated.
Covid-19 is still an evolving pandemic with its constant mutations and emerging variants which continue to pose a significant threat to the general public and particularly people like myself. However, with the development of drugs and vaccines, I am optimistic that life as a CKD patient will be improved over time as the potency of Covid-19 largely diminishes and our lives as we remember it returns to normal. However, until the Government gives the all-clear on Covid-19, rules and guidelines will continue to evolve depending on the rate of infection and emergence of variants of Covid-19. As CKD patients, I appreciate that the rules will always be different and perhaps more stringent in my unique circumstance, but the important thing to note is that whatever the rules are it is in my best interest and to give me the best outcome in the most uncertain situation.
Obeying the rules and following the guidelines are not easy especially when I know they apply to me differently, but the key to keeping to rules is not to see myself as being different or vulnerable, but as being treated as a very important personality (VIP) like the PM or Royal Family because their rules and guidelines are not same as the general public too. This did not only help to improve my mental challenges but my understanding of why the rules is in place in the first instance.
I am happy with what research and development of the vaccine have had on improving my mental health in this difficult period. I appreciate what various charity organisations like Kidney Research UK has done in giving support and advice on how to be safe in this difficult time and the importance of receiving the vaccine.
After such a long time, my family and I can go shopping for Christmas and eat out like the rest of the country.
What we're doing to support patients
We are using the latest research data to help highlight the vulnerability of kidney patients and to lobby for priority access to fourth Covid-19 vaccinations and newer monoclonal antibody and oral anti-viral treatments.
New treatments are now available to be offered to clinically vulnerable people with Covid-19. Find out if you're eligible.