Awaiting a kidney transplant and locked out of hospital: The best days of my life

2020 has been a year of unprecedented trials, tribulations and triumphs.  Each day this month, we will publish the stories of ordinary Queenslanders enduring an extraordinary year. Today, mother, blogger and transplant recipient Emmy O’Neill finds an incredible silver lining in the gloom of the global pandemic. This is her story:

Emmy O'Neill has found a silver lining in a year filled with doubt and fear (Photo Kym Renay)

Emmy O'Neill has found a silver lining in a year filled with doubt and fear (Photo Kym Renay)

Loss of control. Uncertainty of what the future would bring. Uncertainty of what tomorrow would bring. Scared. Isolated. Anxious. Alone.

These are all the feelings I had in July 2018 when I was told I would need to start dialysis to stay alive.

When my only option for survival and to see my children grow up was to be hooked up to a machine in hospital, with gigantic needles poked in my arm twice a week. Every. Single. Week. Forever.

Well, “forever” until I was lucky enough to get a kidney transplant. Nearly two years later I still need dialysis to stay alive and I am still waiting for a kidney transplant. But I no longer have those feelings. Now I just feel grateful.

When Brisbane went into “lockdown” due to COVID-19, I actually felt calm. While my friends and family felt scared, uncertain and an overwhelming sense of loss of control; I felt calm.

I had dealt with all those exact feelings 18 months prior. I had “Brene Browned” myself so much, that in fact I was able to just accept this lockdown and this change in life.

I had dealt with all my inner feelings of vulnerability and I just accepted life and all those lemons she had given me.

COVID-19 lockdown was actually a gift. “ISO” made me feel like I had time travelled. I got minutes, hours, days, and weeks back with my children. Precious time that I had lost over the years due to kidney failure and dialysis treatment.

I got the privilege of spending every single second with my children and we just got to be. We slowed down, we baked, we planted veggies, we read, we did puzzles, we jumped on the trampoline, we played board games, we did home- school, we made a beach in our backyard, we did science experiments, we went for bike rides, we walked the neighbourhood, we slept longer, we ate together every day, we just lived and relished in each other’s company.

Was it hard? Absolutely. Was it exhausting? 100%. But it was a privilege. It was time I genuinely never thought I would have with my children again.

We all flourished in “ISO” because we truly learnt to live in the moment. We stopped forecasting into the future, and we stopped worrying about the past.

This is not to say there were no challenges. Absolutely there were challenges. When faced with adversity I’ve decided to always remain grateful and positive. Glass half full and all that.

I was told early on during this pandemic that due to COVID-19 that kidney transplants would be stopped in Queensland and, in fact, all over Australia.

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Organs that could have saved lives would not be used due to COVID-19. It was too high risk. The hospitals needed the ICU beds. They would be stopped for the foreseeable future.

I cannot put into words what this felt like to be told after 18 months of dialysis that the wait time would be unknown. Devastated comes to my mind, but also an overwhelming sense of relief.

Relief that I didn’t need to live every day ‘waiting for a phone call’. Waiting for someone to call me to say we have found a kidney that is a match.

Instead of waiting for that phone call, I just got to live. I stopped living by my phone. Instead of my iPhone being at my fingertips, my children’s fingers intertwined into mine. ALL DAY LONG. And I loved every second of that time with my children. It was certainly the most magnificent of silver linings.

Life has seemingly gone back to normal for many of us. But we are holding onto “the slow” and “the togetherness” we found during lockdown. I am still waiting for my kidney transplant and there is still uncertainty in my life and in the world.

There is still so much unknown. But I have comfort knowing that my little family and I time travelled together and discovered a whole new way of seeing the world around us.

We learnt to truly be grateful for the important things in life; being alive and family.

(Emmy was thrilled to be the recipient of a kidney in September 2020. Her new kidney has been named “Beanie”.) Instagram: @the.oneills

This story was first published in Stories from the Heart, an e-book edited by Dr Johanna Skinner and editor Jane Connolly, and is republished with their permission.  

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