"Oh my God!
What’s happening?
It feels like I’m having a heart attack!”
I used my last ounce of energy to speak those words. I was in shock, gasping for air and extremely exhausted.
The Pen y Fan experience
Thankfully I wasn’t having a heart attack. With the severe breathlessness and rushes of pain to my chest, around my heart, I thought I had been.
What on earth was I doing you may ask? I was climbing Pen Y Fan, the highest peak in South Wales, along with 4 friends from church. I can hear some of my Nigerian people saying "Soni, wetin carry you go climb mountain?"
It was a month before my wedding and as I experienced exhaustion like never before, I clearly remember saying a desperate prayer to Jesus: “please don’t let me die here, I’m getting married next month!”. As the mountaintop was not far away, I stubbornly carried on climbing and eventually made it to the summit with frequent pauses to rest and caring arms holding me up.
I was so embarrassed about how badly I struggled and kept saying sorry to my friends for making the climb a not-so-pleasant experience for them. They were gracious and we laughed about it all. I was teased about not being the Marvel's Black Panther I claimed to be 😆
We did not realise that at the time, I was at a major disadvantage and had a serious lung condition yet to be uncovered.
When people ask me how I ended up needing a lung transplant, The ‘Pen y Fan experience’ comes to my mind first. It forced me to confront the reality that I needed urgent investigation into my breathing difficulties.
I went to my doctor weeks later and he arranged for me to do some tests. When the results came back, I was quickly referred to respiratory consultants at Llandough Hospital here in Cardiff, Wales. I knew something was up and it wasn’t looking good. When I sat with one of the consultants, he asked many questions to understand more about my medical history. Among these questions were: whether I had a history of smoking? No - I had never put a cigarette to my lips. Had I ever been in a bomb explosion? Ermmm no.
However, my lungs were damaged in such a way that those questions made sense. I was just 29 years old at the time. What caused this damage? Only God truly knows but my history can give more context.
Early battles
I was born in 1989, a healthy and chubby baby. At 5 months I developed bronchiolitis. I suffered with Asthma at 15 months and pneumonia few months later. These 3 respiratory conditions troubled my little lungs before I turned two years. In hindsight, even though Asthma left me some years later, my lungs had already suffered irreversible damage. I experienced this in the form of breathlessness while engaging in physical activities throughout my life.
Looking back at my school days - from primary school to university, I was living on a fraction of normal lung function. I didn’t know what it felt like to breathe normally. I played some sports but was often embarrassed about my heavy breathing and quickness to become breathless. I often tried hard to hide my breathing difficulty as I saw it as a sign of weakness. An unintended benefit was that I developed resilience by forcing myself to power through, often pretending to be fine. Many people in my life had no clue as even I became used to the breathlessness being my normal. The interesting thing is, I eventually began to think it was a problem with my fitness. All the while, I was at a great disadvantage breathing-wise but couldn’t connect the dots.
Worse and worse
Eventually, my breathlessness had enough of being behind the scenes. It was determined to take centre stage and it prevailed despite my best efforts to hide it and carry on living as if it didn’t matter.
After my initial diagnosis in 2018, the following years were progressively difficult for me. My loved ones watched me descend deeper into the dark valley of suffering as my lung condition got worse.
I had a graphic and web design business alongside my full time job but had to drop it. I had a blog I was passionate about called The Light Train - had to drop it. I used to play tennis at least twice a week but sadly couldn’t continue. My ability to stay in touch with friends took a hit. I became quiet on social media despite being quite active in prior years. My reality felt too perplexing and nuanced to capture in posts or with photos. I was a walking contradiction. It became harder to get out of bed and make it through the day without feeling flat out tired.
One of the things that was difficult to deal with was not being able to have a precise diagnosis of my lung condition. At first, it was thought to be a condition called sarcoidosis. An attempt was made to conduct a biopsy but the procedure had to be stopped due to my oxygen levels dropping very low. Later on, my diagnosis was: “indeterminate cystic lung disease and co-existent emphysema”. Eventually it was classed as Interstitial Lung Disease (ILD). Regardless of what it really was, several things were clear: it was severe, irreversible and progressive.
On the outside, I looked reasonably healthy and was quite often cheerful. I truly was. My relationship with Jesus, lots of prayer and encouragement from my church family, many other Christian communities and strong social connections in work helped to encourage me through the hardships I was facing. However, on the inside of my body, the reality was very grim.
My doctors were amazing and gave the best care they could. They kept trying to help me and slow down my decline. Inevitably, I was sinking. My life was ending and there was nothing I could do but pray and hope. Things got so bad, I became dependent on oxygen cylinders daily.
My last option
In August 2022, tests revealed I was at the end of life stage. I felt it. I was more breathless than ever before. Soon after, violent coughs became a monster which tormented me at random times during the day and almost every night. On 3 occasions, I blacked out due to these coughs. There was the night I took the waste bins out, leading to a stranger calling an ambulance. I was in the hospital for days. The other times? I was at home. One of them was during dinner, watching Peter Rabbit 2 with my wife. Quality time disrupted.
At this point, it was very clear that it would be in my best interest to consider having a double lung transplant. The first time it was mentioned, I had ever heard about lung transplants. I never knew that such a procedure existed. I had heard about kidney, liver and heart transplants but never lung transplants. The idea scared the ‘living daylight’ out of me. I almost laughed it away due to shock. I was in denial and didn’t ever think it'd come to the point of me desperately needing a transplant. I was blindsided by being able to get through life reasonably at the time. We hear about people going through difficult health challenges but never think that one day it might be us facing the horror.
My doctors were wise to proactively begin my referral to the Harefield Transplant Clinic in London. I remember when my wife and I travelled there for an overnight assessment and chatted with a transplant coordinator. We left feeling scared to the bones and almost resolved that it was probably best for me to just see off my days and be grateful for the years I’ve had. As a Christian looking forward to being with Jesus when I die, I was inclined to conclude that it would be best to just let things be. It just didn’t seem like the risk and possible complications with having a transplant were worth it. Google is your friend they say, but what kind of friend is it? We went down rabbit holes and found statistics that looked so grim.
When I returned to Cardiff, I had a chat with my physio. He reassured me that the statistics online were generalised and not specific to Harefield Hospital which had an impressive track record. He told me it would be worth considering the procedure as having a transplant could give me more years with a better quality of life. Through him, I got to meet a transplant warrior who had had his double lung transplant for over 5 years at the time. He and his wife were incredibly kind and gracious to welcome my wife and I into their home and we chatted for over 2 hours! Talking to them was so crucial as it helped us to see what was possible if I had a successful lung transplant surgery. Hearing their experience helped us make one of the biggest decisions we’ve ever had to make.
I remain forever grateful to these two wonderful people. In fact, what they did is one of my biggest inspirations for Sonsare Lives On! - sharing my story with the world and welcoming other respiratory sufferers to reach out for a listening ear. Nothing beats hearing from someone who has been through what you are going through or who has faced what you are going to face.
What was ahead of me? Well, you already know I eventually got to have a double lung transplant. But how did that happen? You can find the details in Part 2 of my story.
Two questions for you: Who will be encouraged by you sharing a difficult experience you've been through? Will you share, to help them?
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