Posted by Pravalika Bharadwaaj, Hyderabad
I have had two attacks since the day lockdown started. During those attacks, I had to find my OT (operation theatre) nurse. He happened to be working in the hospital with the emergency ward. I was too scared to call him for help. But I had to. Thank God! He was supportive and did not come home straight from the hospital.
I am Pravalika, an HAE patient and a software engineer. HAE (Hereditary Angioedema) is a genetic condition that leads to recurrent attacks of severe swelling of body parts, which may become life threatening. My Dad was diagnosed years ago. But there was no medication and very few doctors knew about it. They misread the symptoms. Along with Dad, my Uncle and cousins also have the condition. In 2017, I lost my cousin to it.
I have been dealing with this rare condition since 2016. I get HAE attacks once a month. My abdomen swells up due to water accumulation. I cannot move in dire pain. In spite of movement restrictions, I immediately have to rush to the hospital and get my medication. Then I come home and sleep like crazy.
In these 60+ days of the lockdown, I was super sick for 10 working days with weekends in between. And in these days, I still had my work, meetings, deadlines to finish and everything else. And then there were days, when I could not use my mouse as I had a cannula stuck in my hand.
With my condition, a cannula is a must to get injections. With my veins hardly visible, I usually rush to the emergency unit, where a nurse from the OT needs to insert the cannula. But during lockdown, I could not risk going to the hospital. I have had cannulas in the funniest possible places in my hand. Like my little finger where my finer veins were kind of visible. We had no choice other than getting a cannula in there. I have cute band aids which make me feel a little better after an attack.
During the lockdown, it was more difficult than the usual attacks. This time, I did not have access to the hospital. And I had to deal with it, without any doctor’s supervision. Usually, I run a fever during an attack. As this is similar to a COVID-19 symptom, I was extra worried. Thanks to all the wonderful people in my life, especially the nurse, I was able to manage it well without rushing to the hospital.
My way of working with this anxiety and my health condition is to stay as calm and as occupied as possible. I work for 9 hours as a developer and keep my hobbies alive at the same time. Every day, I wake up and go back to sleep looking forward to do all the little wonderful things that make me happy. Good things that happened in this lockdown are, I became closer to my family more than ever. Now, I have trained myself to calm down whenever I am tensed about anything.
And I keep praying that like my nurse, there are more Good Samaritans. The world needs them.