It wasn’t what I expected from a 16 birthday party. My eldest son Maninder had come home from seeing his friends saying he felt heavy in the chest. I gave him indigestion tablets and he went to bed early.
But at midnight he came into our room saying he didn’t feel well. He collapsed onto the bed and we rushed him straight to hospital. The news when it came was like a bolt out of the blue – our son had an inherited heart condition called hypertrophic cardiomyopathy, and I had passed it to him.
Looking back at that day, it was the start of my own journey to a heart transplant. The heart condition in my family causes the heart muscle to thicken and means it’s less able to pump blood around the body. It can also cause a sudden cardiac arrest and possible death. To discover I had passed on this potentially deadly condition was devastating.
We were all offered testing and we found out that our youngest son, Manvir, who was only six, had also inherited the condition. We’ve all been affected differently. Maninder had to give up a promising rugby career because that level of exercise was dangerous for him, but thankfully he gets by on medication. Manvir, however, has been affected more severely. He has an implantable cardioverter-defibrillator (ICD) in case his heart goes into a life-threatening rhythm and, now 17, he’s never completed a full week at school because of his exhaustion.
I soon started to experience symptoms. I was breathless and had problems climbing stairs. Some days I was so dizzy I couldn’t get out of bed. By 2011 I was told I needed a combined ICD and pacemaker. It helped my heart beat more strongly and, if my heart went into a dangerous rhythm, the ICD would shock it back to normal.
It helped for a while, but over the next few years my health went downhill, and by 2017 I was bed-bound, and I was put on the urgent heart transplant list. I knew this was my only chance of life, but before I made the final decision I sat down with my husband Balwinder and my two sons to talk honestly about how they felt. My sons told me: “We don’t just want you for the short term Mum. We want you with us for the long term.”
I waited for a heart at Harefield Hospital. I was incredibly lucky. People can wait years for a heart and some die on the waiting list because of the shortage of organs for transplantation. But at 2am one night I was woken by my transplant coordinator. “Inderdeep, Inderdeep, wake up,” she said. “It’s time.”
“Can I call my family first?” I wanted my family in that moment. I wanted someone to hug me. I called my husband and said: “It’s time.” In less than 15 minutes he and my two sons were by my side at Harefield. “Don’t worry, everything will be fine,” I told them. “I’ll be out in a jiffy.”
I received my new heart that day, and there followed six tumultuous days for my family while I lay unconscious in intensive care. Would I live? Would I be OK? Would my body accept the new heart?
“Open your other eye,” said familiar voices. “You’ve opened one eye, now try the other.”
I heard these words 15 days after my life-saving surgery. The first words I comprehended with my new heart. My legs had swollen up like elephant legs! There was so much fluid in my body. I had to learn how to move my toes again, how to swallow and how to talk.
I left hospital some time later, and before I did I asked about the donor. All I could be told was the age and sex of the person whose heart is now pumping inside me. Later I can write a letter to the donor’s family. But not just yet. A family has lost a loved one and not a day goes by without me thinking about my donor. Every little thing I do, I remember. And we have this condition in our family, so, one day, one or both of my sons might need a lifesaving donor like mine. Beyond my family’s situation, the need for organ donors is urgent for many families.
I’m writing my story as a new law comes in. The legislation, Max and Keira’s Law, will save lives. And I know the British Heart Foundation have done a lot work advocating for this legislation, and encouraging families to have those difficult but life-saving conversations about organ donation with their loved ones. Max and Keira’s Law will mean, except in some circumstances, we are all now organ donors in England unless we decide not to be. So many people who are on the waiting list for a donor organ, as I once was, will now live because of this law.
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