This week we have joined forces with the Department of Health and Social Care and a range of charities across the health sector urging people to have their vaccine. At Kidney Care UK a significant number of our team are kidney patients themselves so we’ve been able to start 2021 with renewed hope for a return to something close to normality. We do understand however that a lot of kidney patients have questions and concerns about the vaccine. We’ve held a couple of webinars on this topic where many questions have been addressed but we also wanted to share the experiences of the team at the charity to help people who may now be getting their own calls to book an appointment.
Caroline, our Patient Support and Advocacy Officer for the South East of England told us “I was very keen to receive a Covid19 vaccination, being extremely vulnerable I received my first dose in early February after shielding for just shy of a year. The arrangements at the clinic were very efficient and I felt safe there, everyone was kept at distance and the nursing staff and volunteers were very respectful of the situation, giving clear advice and instructions. The vaccination has to go into the muscle and so was a little more uncomfortable than usual and the bruising is taking its time to heal, but that’s partly down to my medications and condition. I had what seemed like a mild cold for a few days but other than that experienced no major side effects. My second dose is due in April and I very much look forward to having a level of protection from Covid19. I will continue to take precautions but I do feel, at last, that things are going to get better for all of us this year.”
Sharon from our Communications Team was surprised to experience a few of the common side effects, considering she never has with any other vaccines; “Being in the clinically extremely vulnerable group I was pleased that I would be getting my vaccine fairly early in 2021, after shielding for over 300 days it was the glimpse of light near the end of a dark tunnel. I was incredibly impressed with the set up; the volunteers were doing a brilliant job and the process was seamless. I received my dose of the Astra Zeneca vaccine in early February and will have my next dose at the end of April. I’ve never reacted to any vaccines other than having a slightly achy arm for a few hours so it was a bit of a surprise when I experienced the common side effects. However this was also reassuring as I knew it meant my body was responding exactly how it should be building up my response to keep me protected in future. I can’t wait to get my second dose and am optimistic about the months ahead.”
Matt who is also one of our Advocacy Officers (covering North London) has a slightly different perspective to share: “I remember when COVID first started coming into everyone's conversations, nobody knew what was coming. I specifically remember having these conversations in cosy restaurants, crowded pubs and small classrooms. People were anxious but mostly oblivious, it was February 2020 and the problems were somewhere else so we were free to carry on. Flash forward a few weeks and everything changed. I watched my husband's career in the airline industry come to a terrifying halt as he lost thousands of his colleagues to furlough and layoffs. I worried alongside family members with cancer and immunodeficiencies living in panic and uncertainty. I spoke with dozens of patients with kidney disease sitting with worry and wondering what horrors were lurking around the corner. I couldn't do much in any of these situations but listen and support as best as I could, hearing the constant lament from everyone that we just need a vaccine so we can move back into the light or back to work.
“So when I got word that there was a Covid19 vaccine trial being run within the NHS, I signed up immediately because it felt like a personal responsibility. People were pretty divided about me moving forward with it, anxious that it could have a negative impact on me; worried that because I'd donated a kidney years ago that my body wouldn't be able to cope with the jab. I sided with 'I'll probably be fine' and moved along, hoping that the small effort could help solve the bigger problems. In October and November of 2020, I received my jabs of the Novovax vaccine that has since been shown to have 83% effective rate in fending off COVID-19. I'm not sure if I was given a placebo or the real jab, but it has been rewarding and exciting to participate in the clinical trials that will help bring us out of the fog. I've had blood tests and medical visits with the investigators, and I've been fine and Covid-free all along. The trial experience has been so positive, that a friend of mine who had discouraged me moving forward with the trial has since enrolled. This whole experience has shown me that we can get through this by working together and by getting vaccinated.”
Fiona our Policy Director explains how getting the vaccine made her whole family feel that the end was in sight: “I was so pleased and relieved to receive an email on a Friday evening towards the end of January ‘Would you like to come up to the hospital tomorrow at midday? We have about 90 doses of the Pfizer vaccine and are vaccinating some people with transplants’. It took about a nano-second to reply! As it was a Saturday morning it was an easy drive and an empty car park. Seeing renal staff who I knew well and how happy they all were to be vaccinating patients was so motivational. My daughter said that it made her want to jump for joy and for me and my family; we felt it was the start of our journey back. As for the vaccination itself, I didn’t feel a thing and was lucky to have no more than a slightly sore arm the morning after.
Linda who works supporting patients in the Yorkshire and Humber area has plans to celebrate her second dose of the vaccine, having booked it in for her birthday! “I kept logging on to the NHS website to see when I would be allowed to book and last Monday it allowed me to. I booked it for 4pm in the afternoon thinking if I had any affects it wouldn't interfere with my day. I booked at Hull City Hall and was allowed in 15 minutes early. They were so efficient the door man asked me the questions, then the next lady asked me very similar questions and then I had to book in with a lady on a laptop. I had all my booking details with me so I sailed through. Sat at a table socially distanced of course and was introduced to Paul and Mike one asked me questions and my consent the other jabbed me; I never felt a thing. On getting home I took 2 paracetamol in case of a reaction. I had no after effects what so ever, no arm ache , no chills, nothing even the next day. So much so I am now wondering if they actually gave me the vaccine! I have my second booked on my birthday in May. I would advise anyone to get the jab, it is so important we protect ourselves and each other.
Sumaya who works on our Kidney Matters Magazine added: “It’s no exaggeration when I say that I am VERY precious about my health. Having lived with chronic kidney disease for almost 12 years and currently on my second kidney transplant, I am very wary of taking medication or vaccines on top of my already long list of tablets I take to sustain my transplant. So, naturally I was quite apprehensive when I received my appointment letter for the vaccine. Like many, I was also quite sceptical and feared the impact this would have on my health. But if there is one thing that I have learnt living with kidney disease is that knowledge is empowerment. I spoke to friends who had received their vaccinations and listened to clinicians who provided clear guidance.
“I was ready, confident and quite excited to get the vaccine. I drove to the venue and was amazed by how organised and friendly the staff were. I received the vaccine and a few hours later I started to experience a few side effects such as achy muscles and a sore arm where I had the vaccine and just feeling tired. These quickly subsided and now over a week later I feel great. I would encourage everyone to make an informed decision based on evidence and take the vaccine. We are living through difficult times and if life is to get back to ‘normal’ then this is a step we all must take.”
Rob, who provides advice to kidney patients in the North West of England explains how has been working with his team at the Salford royal to monitor his antibodies following the vaccine; "Like many in the Clinically Extremely Vulnerable group, I was desperate to see some light at the end of what has been an interminably long tunnel. None of the vaccine trials included those with suppressed immune systems, so I confess, I approached the chance of a first vaccine with a little trepidation but also a determination to take every opportunity to return to normality. I was contacted by the transplant team at Salford Royal and offered a vaccination of the Pfizer/BioNTech vaccine, which I received at the end of January and I have my second dose scheduled for early April. They also kindly gave my wife the vaccine too. The nursing and volunteer staff delivered a smooth, safe and socially distanced experience and gave both of us time to ask questions. Immediately after the vaccination I returned to the renal unit at Salford Royal where they gave me a Covid19 antibody test with the aim of following up with another antibody test after my second dose. This will allow us to understand the level of vaccine effectiveness in the immunosuppressed community which in turn will help me to better assess my level of risk should I be infected."
Last but by no means least, Deborah Duval, Editor of our Kidney Matters Magazine explains how grateful she is that we’ve been able to get vaccinated: “I’d be lying if I said I wasn’t nervous as I drove the five-mile journey to receive my vaccine. I have always been ultra-cautious about the drugs I am prepared to take into my body – ask my long-suffering renal consultant! My mantra has always been, ‘if you can’t absolutely justify it, I’m not taking it.’ My transplants have been hard-won and are way too precious to me to risk. But we live in unprecedented times and I have my own contribution to make to help the people I love (and me) recapture a life more-normal than the one we currently live.
“I have also listened closely to the evidence-based information provided by the virologists and well-respected scientists. So, for me, it was a no-brainer. As I pulled up outside the hospital, I was quite over-whelmed by the positivity and kindness of the staff there, from those volunteers in the car-park directing me into a car-park space, to the nurses dispensing the vaccine. I don’t know what I expected but there was an air of ‘we’re all in this together and we WILL beat this pandemic’ about the place. The whole process, taking about ten minutes in total from start to finish, was well organised and there were smiling eyes everywhere. As someone who has lived with chronic kidney disease and diabetes for over 35 years, I’m fairly un-phased by injections per se. A pin-prick and it’s all over in a second; there were side-effects to be dealt with over the following week which manifested themselves as headaches for a few days and just feeling unusually tired. Six days in and I am back to my normal ‘bouncing off the walls’ self; I’m feeling good and feeling grateful!”
Risk assessments, Covid-19, viral prevalence…
Dr Tony Williams talks about assessing personal risk of Covid and what tools are available to aid in this.