In August 2023 I had a double lung transplant - the most daunting challenge I’ve ever faced in my 34 years of existence. While I knew that receiving new lungs and the hope of having more days would be an incredible gift and miracle, the thought of going through such a major surgery left me feeling completely overwhelmed.
On that memorable evening of August 26, I was led into the operating room after a warm encounter with a friendly team of anaesthetists who gently lulled me to sleep to the vibrant melodies of Coldplay’s Viva la vida. For a span of over 8 hours, an exceptional surgical team at Harefield Hospital performed a successful operation to give me a new lease of life. As I walk down the path of recovery, I am overwhelmed with gratitude that I’m alive and enjoying breaths deeper and more invigorating than ever before.
How did I get to the point of needing a double lung transplant?
My Journey to Transplant
In 2018 I was diagnosed with a severe lung condition called interstitial lung disease (ILD). This discovery began with a very difficult attempt to climb Pen y Fan (the highest peak in South Wales) with some friends from my Church. While the climb was effortless for them, I struggled profoundly. It was evident that my struggles were beyond a matter of fitness, prompting me to seek medical advice afterwards. During my visit to the GP and subsequent x-rays, I was asked if I was a chronic smoker. I had never once put a cigarette to my lips, given my history of breathing problems, ranging from severe asthma and bronchiolitis since infancy, to pneumonia and numerous chest infections over the years. Equally surprising were questions about whether I had ever been exposed to a bomb explosion, all in an effort to understand the cause of my severely damaged lungs.
Admitted on the ward for assessments which revealed that I was at end-of-life stage
Fast-forward to the beginning of 2023, my condition had become a lot worse and I was considered to be in the end-of-life stage. My daily existence depended on high-flow oxygen cylinders just to move around. At the time I had been married to my wife for four years and we were looking forward to welcoming our precious baby boy into the world. Daily thoughts of dying due to my severe illness and missing out on life's precious moments with them left me utterly devastated.
Talking helped me a lot!
Throughout this trying period, I found solace in consistent conversations with some members of my Church family. Their prayers and unwavering support was a lifeline. My parents, sisters and friends kept checking on me and encouraging me. Additionally, I joined a Facebook community of individuals living with lung and heart transplants, where I received invaluable practical advice and drew inspiration from the diverse journeys of fellow transplant warriors.
Out and about with my son, a few months before my transplant
I often have a positive outlook on life. This is one of my strengths and yet I can be prone to maintaining a facade of "business as usual" on the outside even when grappling with fears and worries on the inside. At one point it seemed like I didn’t even have the words to describe what I was feeling and was unable to process it all. Because of this, joining various groups and actively seeking support was very helpful. In a very useful group session with an incredible occupational health therapist, I came to realise that I was experiencing grief. I was grieving the life I once knew – a life filled with playing tennis, physical agility to do various chores at home, passion projects like a blog I had, running a graphic and web design business alongside my full time job, volunteering to foster some communities I was part of, and staying connected with friends across the globe. As my health deteriorated, I had to cut back on a lot and let many things go. Exploring and talking through the emotions trapped inside me enabled me to come to terms with my reality, pace myself, and cherish the ‘little’ things I could still do despite having a severe lung condition.
NOYT promotes a very important message that being on your own, especially during challenging times, is not something to be embraced. As a cherished member of a loving church family, I remain profoundly grateful for the people in my life with whom I could share my burdens, cry when I needed to and reach out for support. I had many moments when I needed to unburden myself and talk through the difficulties I was experiencing. I was blessed to have an incredible support network, including caring colleagues at work who were always willing to lend a listening ear.
Despite finding many conversations encouraging, I did not find every interaction helpful. You might experience this. Don’t let it put you off. Sometimes I was misunderstood. Some people in my life could not cope emotionally with what I was going through and would say things that were not helpful considering my situation. At certain points as my illness progressed, I was mindful about who I spoke to. Over time you’ll learn to know who is helpful to talk to or where to go for support.
My encouragement to you
If you find yourself struggling with loneliness or isolation, please know that you don’t have to deal with it alone. I totally understand that it can be hard to open up and tell someone about our struggles. Will they understand how difficult our situation is? Will speaking to them help? The hardships we face can isolate us making it difficult to seek connection or ask for help.
I’ve learnt that there is someone out there who will listen, and I sincerely hope you find them. It might be a therapist, support worker, a close family member, or a friend who cares deeply for your wellbeing. I encourage you to explore local community groups as they often have helpful resources and support available. You can find a church near you and stepping into one could potentially change your life as it did mine. There might be hubs in your local area which also offer valuable resources and support services. I found stories from real people very helpful during my difficult season. You can read inspiring blogs on the NOYT website by people who have come through tough seasons.
I attended a virtual session at work months ago where Chris Todd was the special guest and spoke about the passion which led him to create the Not On Your Tod (NOYT) brand. I was inspired by his story and I’m pleased to share this blog in support.
Let's break the silence. You are NOYT. Brave the logo and let’s get talking.
If you found this blog helpful and would like to learn more about Sonsare’s story, follow him on Instagram @sonsareliveson