Like a lot of other kidney patients and others classed as clinically extremely vulnerable, I was shielding from early March 2020. During the first lockdown, I suffered frequent panic attacks and low mood. The fear and paranoia of catching Covid-19 and the potential outcome was overwhelming and made me literally want to hide! Fortunately we live in a very rural village in North Norfolk but I was still too scared to leave the house to go for a walk in case something happened and I would need an ambulance. Having had a kidney transplant in 2018, and living a wonderful dialysis free life, I couldn’t bear the thought of that all being taken away. With my anxiety levels rising, I reached out and had some counselling that helped me enormously.
As restrictions lessened throughout 2021, I continued to make my own risk assessments on a daily basis. Unfortunately in December 2021, I started to feel like a cold was coming. I didn’t panic like I had done previously because I’d received three vaccinations and a recent flu jab. So I felt mildly confident it was going to be a 24 hour cold that often circulates at this time of year.
On Sunday 12th December, I woke up not feeling great, an overwhelming feeling of lethargy, a slight dry cough and a headache, it wasn’t going to be just a cold. I decided I would do a lateral flow test (LFT) just to put my mind at rest. The red line appeared immediately at the positive point. Despite being prone to anxiety, I felt nothing but calmness. My husband said I was in denial! I think my mind went straight to fight mode and ‘pulled my hat down’ ready for battle. Just like it did when I was told I would need dialysis and a transplant. The first thing I did was book a PCR test for the next morning. The result was back 6am Tuesday morning - positive. I knew that though, the day before I’d gone straight back to bed after taking the test. I didn’t have a fever but I knew my breathing was heavy, the cough was worsening and the fatigue was extreme. My throat and glands were inflamed, and my tongue had strangely swollen too! The nights were the worst because I was too scared to go to sleep in case I didn’t wake up. My husband and son were trying to socially distance from me in other rooms, but also trying to look after me. It wasn’t the greatest situation to be in, but we managed and I don’t know what I would have done without them.
I follow Kidney Care UK on social media and found it is one of the best ways to get relevant and current information for kidney patients. They had recently shared information about new treatments for kidney and immunosuppressed patients if they got a positive PCR for Covid-19. By Wednesday (my fourth day from the LFT) I knew I was poorly and not having the mild symptoms others had described. I had read about the new IV antiviral treatment for people at highest risk from Covid-19. It was due to come into effect on the 16th December, so I phoned my GP to see if it could get it a day earlier as a desperate attempt to get help as I had noticed my symptoms were worsening and to be honest, I had started to panic now. Unfortunately they knew nothing about it, nor had my renal team when I’d rung them earlier in the week. To say I was disappointed is an understatement so I resolved myself to what will be will be. I updated my end of life plans that I keep at home, and became very practical at what I needed to have in place. I even ordered some sparkly slippers in case of a hospital visit!
Thursday my cough had started to ease up slightly, however my breathing and oxygen levels were up and down. I literally spent all my time sitting or lying down to preserve my energy and hope that my oxygen would be ok. Just going to the bathroom would leave me gasping for air. Fortunately I never had a fever, but the headaches and body aches were excruciating. I’d lost my sense of smell early, but could still taste food. Waking up in the mornings were a blessing, but it took me a while to get out of bed.
At about 10am Friday morning I received a call from a consultant at the Norfolk and Norwich hospital saying that I had been identified as a vulnerable patient with Covid-19 and asked if I’d heard of the new antiviral treatments and would I like to have it! I thought my heart was going to stop at that moment. Yes I kept saying! He explained that because it was new they were scrambling a team together and they would be in touch with me to have the treatment as an outpatient later that day. I put the phone down and cried for the first time. In between my crying and coughing I was able to explain to my husband what was happening. The look on his face said everything, this was a lifeline for us.
I arrived at the hospital about 6pm and went straight to a single room on a general ward where a specialised ICU nurse was going to look after me. He explained that it was going to be an IV infusion of an antiviral called Ronapreve that would take about 45 minutes to process and I would need to stay an hour and a half after just to be monitored. He was the kindest person and reassured me and took time to explain everything. Apparently I was the second person that had been brought in for this new treatment and after me was another kidney transplant patient, making me the first one to receive it at Norwich. I honestly didn’t feel a thing through the infusion and it was good to talk through my symptoms with the nurse. He explained that the Ronapreve would give me a boost of protection and help any antibodies fight harder and as a result, I shouldn’t get any worse.
Within three hours I was on my way home with my husband, so grateful that I had received the treatment, but also a sense of sadness that so many other kidney patients has lost their lives. I don’t know which strain of Covid-19 I had, but I do believe that without my vaccinations the outcome for me could have been so much worse. It’s three weeks since I tested positive, it’s a very slow recovery. A couple of days after the Ronapreve, my symptoms were definitely lesser and I was able to get dressed and do simple things around the house. Today I wouldn’t say I’m back to normal but I do feel better. I still can’t smell much though.
I’ve had my bloods checked this week for transplant clinic, and I’m so relieved to say that my kidney function is as stable as before Covid-19, I am incredibly fortunate. I have my booster already booked for 20th January!
Find out more about antiviral treatments here.
Keep up to date with the latest Covid-19 guidance here.
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