by Hamed Amiri
This wasn’t the first time we’d talked about a transplant of course. But it felt different this time. It felt like it was the only option left. Hussein was restless. I would sense that he wasn’t sleeping, instead spending hours each night lying awake, his mind racing. Sometimes I got up in the night and found him wide awake, his eyes open and searching. I’d try to keep him company then, distracting him and occupying his mind. But I knew Hussein, and I knew that he was thinking about Mum and Dad. As the eldest he always felt he should look after them. I also knew he took our musketeers promise seriously. There was no way he’d want to leave Hessam and me alone.
We were invited to visit a cardiology specialist in Newcastle to discuss transplant options. After examining Hussein and talking to his doctors at Bristol, Southampton and Cardiff, it seemed they thought transplant might be a viable option. We all had many sleepless nights after that. We were told the risks of the operation, but Hessam and I still spent hours googling success rates and complications. The more we knew, the more afraid we were.
For Hussein, it wasn’t the idea of the operation itself that was worrying. He told me that the thing he struggled with was the idea of having a new heart. He tapped his chest.
‘It’s like an old friend, this,’ he’d say. ‘A bit of a rubbish one, but one that’s stuck around. I don’t think I want a new one.’ I thought about the compassion Hussein had for other people. He needn’t worry – you could do a hundred transplants on Hussein, but his true heart would stay the same.
In some ways, all the discussions about a transplant were like background noise to Hussein while he got on with life. His focus was still on his roles as governor, and even if he couldn’t make it to the hospital he would call up the nurses. His favourites, Hannah and Beth, loved his jokes. He continued to call them ‘Your Highness’ and always made them laugh. But behind it all was serious business. Hussein wanted to improve patients’ experiences and support the NHS staff he knew worked so hard. Time hadn’t stopped for him, so why should it for them? But he couldn’t ignore his own health forever. We had to make more and more hospital visits and another trip to Newcastle before the doctors finally agreed that a transplant alone wasn’t going to work. Hussein’s liver was so damaged that he would also need a liver transplant. Both would have to be done at the same time, an operation rarely done in the UK. No one wanted to ask what the survival rate would be for that, but the procedure was so unusual that I don’t think the doctors really knew.
Hussein was spending more and more time in the Heath in Cardiff as his breathing became less stable, and while I badly missed him, there were other problems at home which kept Hessam and me preoccupied. My grandfather in Herat – Mum’s dad – had passed away. Mum was grieving, and I knew it wasn’t only for him but for everything we’d left behind. It made it even harder for her to deal with Hussein.
I was struggling to sleep at night, and during one restless night while Hussein was staying on the ward my phone rang. I was awake in seconds, and when I saw that it was a landline my heart sank. That meant the hospital.
I picked up the phone immediately.
‘Is that Hamed Amiri?’
I took a long, deep breath in. Something was wrong.
‘Yes.’
The voice was gentle. ‘We need you to come in please. Your brother isn’t feeling well.’
That phrase again. It sounded so innocent, like a child feeling poorly at school. But I knew what it meant.
‘Is he ok? Please … just tell me,’ I begged. I couldn’t stand another one of these close calls.
‘Just come in.’
My heart was racing now. I didn’t care about sleep any more, and my mind was all over the place. I needed to calm myself down before waking Mum and Dad.
I managed to put my own emotions aside, as I had done so many times over the years, and gently woke them. Lying to them when I didn’t even know the truth myself never got any easier, but I had to tell them everything was okay or Mum would panic.
‘It’s just another blip,’ I said. ‘But we need to go in.’
After some discussion we decided that Mum and I would go to the hospital straight away and Dad would get Hessam up and follow after. Dad always struggled to face things head on, and I think he appreciated the delay. I kept telling Mum that Hussein just wasn’t feeling well, but she’d been through this so many times alongside me. She knew the score.
It didn’t take long to get to the hospital, but all the way I kept telling myself it was just another one of those close calls. We’d been here before; we’d get through it. We just needed to get there.
Making our way straight to the ward that was so familiar, Mum waited by the lift, but I told her I’d take the stairs. I wasn’t going to wait for any lift. I ran up two at a time, impatient as ever to be next to my brother. My heart was pounding. What if this time I was too late?
When I saw Hussein he was attached to all sorts of wires. I tried to calm my nerves and sound matter-of-fact.
‘Hey, bro, are you okay? What happened?’
‘I don’t know, I just felt breathless,’ he whispered. His hand felt frail in mine.
There was nothing to say so I just sat there, holding his hand.
When Mum arrived I decided to let her sit with him while I went to talk to the doctors. I was proud of her as I watched her hold back her tears and stay positive for Hussein’s sake.
Talking to the doctors was usually left to me. Mum and Dad still didn’t have brilliant English, and although I’d failed my biology GCSE, I was an expert in the terms of Hussein’s condition. Ever since his operation in 2006 I’d listened to every word, researched every issue and made sure that I understood what they were talking about. I’d picked up a lot, and I knew how to work out how bad it was.
I went to the nurses’ station first.
‘What’s happened? Please tell me the truth,’ I whispered to the nurse on duty. I hoped she’d follow suit and keep her voice down. I didn’t want Mum hearing anything.
Thankfully, the nurse spoke quietly. But as much as she wanted to tell me what was going on and put my mind at rest, she had no idea what had caused this latest episode. We just had to wait for the doctors to come and assess Hussein. It was the middle of the night, so the doctor on call had to be contacted. I was frustrated. I had so many questions. Did Hussein need to have the medication filtered from his blood-stream again? Or were we at the point where he needed an urgent transplant? The nurse smiled, compassion visible in her eyes. She just said we had to wait and see.
The next hour was agony. I let Dad and Hessam know that Hussein was ‘okay’ and settled down for another wait. I didn’t even know what ‘okay’ meant.
Mum was just about holding it together. But I could tell that, while she was telling herself that everything would be fine, deep down she was in pieces. Hussein was still her little boy.
Knowing his condition was critical, the nurses decided to move Hussein into the CCU while we waited for the doctors on call to assess him. I knew what CCU meant – it meant they thought he could crash at any moment. I called Hessam to update him.
Then suddenly everything became urgent. The nurses were rushing Hussein through the sealed doors and they told Mum to stay behind. Heartbroken at having to leave her son, Mum finally let her calm façade drop. I frantically called Hessam again.
Thankfully, as I dialled Hessam arrived with Dad. They’d missed Hussein going into the CCU by seconds. Once again, the four of us were left outside those double doors, wondering what was happening on the other side.
I tried to stay positive for Mum and Dad’s sake, but I couldn’t shake the feeling that this time was different. I knew how precarious Hussein’s condition was at the moment, and how weak his heart had become. I also knew his liver was in a dangerously poor condition. But my focus had to be keeping Mum and Dad calm. Mum prayed silently, her lips moving, while Dad took up his usual pacing. In my head I was going through every possible outcome and how I would deal wi
th it, trying to think how I could best protect Mum and Dad. I remembered Hussein telling me how much they’d sacrificed to get us here, and how it was my job to shield them from whatever lay ahead.
I thought about how close we were as a family, and how everything we’d been through had made us stronger. Unlike most Afghan families, we no longer had aunties and uncles and cousins to support us. Ever since we’d arrived in the UK it had just been us. What I would give now for an annoying cousin or an interfering aunty to lean on! I felt like I couldn’t support Mum by myself. I started to wonder how she would cope if that turned out to be the last time she saw her son. Why couldn’t we just have some news?
I pressed the buzzer at the double doors impatiently. To my surprise, after two or three rings someone answered. I rested my head against the intercom.
‘Please, can someone tell us what’s going on?’ I tried desperately not to cry.
Suddenly the door opened. It was one of the nurses, but all she could say was, ‘We still don’t know. I’m so sorry. We’ve paged Dr Masani and he’s on his way.’ She paused. ‘Hussein’s still not stable but he is okay,’ she added. Then she went back in.
I longed to follow her back to the CCU. I just wanted to see Hussein for myself. Knowing Mum and Dad were waiting for news, I composed my face and turned to talk to them.
‘They’re still setting up the machines and running some tests,’ I said. ‘He’s stable.’ Hessam’s look told me that he knew I was lying, but we both knew it was necessary. Over the years we’d developed a sort of language of our own when it came to Hussein. ‘Stable’ could mean anything.
Dad set off on his pacing again and Mum knelt and prayed, hoping her voice would be heard as it had been so many times before. With both of them distracted, I called Hessam over.
Hessam had always been my little brother. Through all our travels to get to the UK we’d treated him as the baby. But here he was, nearly a man. I wanted to confide in him as an equal, but as ever I was torn between protecting my little brother and wanting to share the burden of my emotions. I decided that Hessam was old enough to be treated like an adult. Besides, I needed an ally.
‘Don’t say anything to Mum and Dad, please, but I have a bad feeling about this,’ I whispered. Hessam looked me in the eyes. Even saying that made me feel like I was betraying Hussein, as if I was somehow admitting that he wasn’t strong enough to fight any more. Hessam nodded. I wondered whether he felt it too.
‘Whatever happens, we’ve got to be there for Mum and Dad,’ I continued. ‘We can worry about ourselves later.’ I realised that’s exactly what Hussein would have said to me.
I felt guilty for telling Hessam about negative thoughts. Not only was I not there to protect my big brother when he needed me, but I’d let my little brother down, too. I tried to push it out of my mind. The priority now was looking after Mum and Dad like Hussein wanted.
I could tell Mum was struggling. She’d only just lost her own father, and this added stress was too much. I wished again that we had some family close by to help. We don’t tend to realise the value of family until we haven’t got it any more.
That was it! I suddenly realised what would help Mum. If I could somehow get her to hear a familiar voice it might help her to stay calm. I thought of her sister, my khale, who had moved to live in Iran. If I could get hold of her on the phone it would mean the world to Mum.
I got my phone and tried to work out the time difference. I couldn’t, but I dialled my aunt anyway. She wouldn’t be expecting a call from her sister, especially if it was the middle of the night, but I hoped she’d pick up anyway. Sure enough, after a few rings, a sleepy voice answered the phone. I immediately passed the phone to Mum, and as soon as she heard her sister’s voice she broke down in tears. Not being with her father when he passed away had been very hard for her and she’d missed being able to grieve with her siblings.
Mum and khale spoke for a few minutes in Farsi, but I could tell that khale was asking about Hussein. Mum couldn’t say much as every time she tried to talk about it she became too emotional. Eventually I took the phone.
‘Khale, how are you?’ I said brightly. I don’t know why I was trying to sound so casual – she must have known something was terribly wrong.
‘What has happened, Hamed? Please tell me.’ I knew she could sense the tremor in my voice.
I locked my jaw and tried not to cry. ‘It’s Hussein,’ I said hoarsely. ‘He’s not well.’
Just like us, she understood what this meant. She started to cry quietly, and I wondered whether I’d done the right thing in ringing her. I explained what was going on and that the doctors weren’t sure what to do. He was really sick this time.
Khale seemed to sense my foreboding. ‘Please tell me he’s ok, Hamed. Can I at least talk to him one last time?’ One last time? I couldn’t control my emotions any longer. Hearing her say that was like a knife in my chest. Tears started to stream down my face. I tried to explain what had happened and why we couldn’t get to Hussein at the moment. But still she begged to hear Hussein’s voice.
‘Khale, I will try,’ I told her. ‘But please don’t say “one last time”.’ My voice was shaking. ‘He’ll be okay, Inshallah, he has to be. Just speak to Mum for a minute.’
I handed the phone back to Mum and rushed out of the corridor. What if I’d spoken to Hussein for the last time too? I couldn’t bear the thought of no more night time chats with my brother, no more laughter, no more jokes. I couldn’t imagine not seeing his cheeky smile again.
I tried to compose myself enough to go back to Mum. There were no nurses in sight, just a long, lonely corridor, and I wished Hussein was there to lighten the mood as he always did. I didn’t know what to do. The only thing I could think of was praying to God that he’d pull through once again. Despite everything, I still believed there was a God, and that he was up there looking after my brother. I still believed he had a plan for everything. I just wished there were more people to pray – more voices to speak up for Hussein.
Then I did something I’d never done before. I reached for my phone and logged on to Facebook. I’d always been very private on social media, never sharing anything about how I really felt. But this was different. We needed as many people behind Hussein as possible. So I wrote a post, asking – begging – anyone who was awake to pray for my big brother.
This last plea done, I put my phone away and went back to Mum and Dad. I’d been away too long – maybe there was news.
I can only think that God must have been listening, because as I turned towards the double doors they opened, and Dr Masani came out. I almost hugged him. If anyone could find out what was wrong with Hussein it was him.
Dr Masani took us into the waiting room and we all sat down. I felt sick in my stomach.
‘Can I just close the door?’ he said quietly. He seemed to be gathering his thoughts.
The four of us just sat in silence, willing him to say something. I couldn’t bear it.
‘Doctor, just tell us what’s happened. Do you know yet?’ I asked.
Dr Masani paused. Then he explained, ‘Hussein’s sudden deterioration is because he’s struggling for oxygen. His heart is no longer responding to the pacemaker and it’s having to work so hard that it’s not able to get enough oxygen around his body. We’re having to give him adrenaline just to keep it going.’
I didn’t understand. After everything I’d learnt and understood about Hussein’s condition, somehow this was too complicated. I only wanted to know one thing.
‘But is he going to be ok? Is the pacemaker failing?’
By now, Dr Masani had known our family for almost fifteen years. He’d been through all the close calls, all the emergencies, all the blue lights. He knew when he had to be honest. He looked at me, then turned to Mum and Dad.
‘Hussein’s pacemaker is working fine. But I think his heart has had enough.’
I stared at him. Then I looked at Dad, remembering that I had to translate so he co
uld understand. But from the look on Dad’s face I didn’t need to. They both understood.
I stared back at Dr Masani. Beside me, I was aware that the others were doing the same. For a minute we were all silent. Was this it? The end of the road? Surely not. Surely there was something else they could do? I felt the sickness right inside my core. Then my mind took over, trying to find the logic in what Dr Masani had just said. Maybe he meant that Hussein would have to have a transplant and it would all be okay? Maybe this was just the next phase?
I knew that I was wrong. If we agreed to a transplant it could take months for a heart to become available. And his liver needed to be replaced too. There wasn’t time. I tried to stay calm, but inside I wanted to scream.
Whether to break the silence or because he felt we needed to know, Dr Masani started going through the details of what was happening in Hussein’s body. Somehow, we all held it together enough to nod along. It was like each of us was trying to be strong for the others. I could hear what Dr Masani was saying, but I knew that we were all just pretending to listen. It was like there were bubbles inside my chest and any minute they would burst and come out. I had to hold them in.
Suddenly I couldn’t take it any more. I interrupted him with my usual question. ‘So, what’s next?’
Dr Masani paused again. It seemed like ages.
‘All we can do is monitor. For the next few hours at least we just need to see if the adrenaline can make Hussein’s heart respond to the pacemaker again.’