Photo by Aiza Castillo-Domingo
Zhineh, 29, met Tom, 35, five years ago, just six months after her mum passed away, and they have been together ever since. However, the past 18 months has been a whirlwind of health complications for Zhineh, meaning lots of time in the UK away from Tom, ending with a strange turn of events worthy of a Jojo Moyes novel...
“It all started on May 3, 2015. I went back to Newcastle for a week for my annual diabetes check-up. While I was there I wanted to talk to my doctor about fertility issues we would face when deciding to start a family, as I knew that the long-term damage type 1 diabetes can cause, such as kidney damage, could complicate things and make it unsafe to fall pregnant.
“However, sitting in the doctor’s office, before I even had the chance to bring this up, he told me the function of my kidneys had deteriorated so much that I was going into kidney failure and that I would need a simultaneous kidney and pancreas transplant. It was an emergency situation, he said, so I wasn’t to travel home to Dubai and had to stay in the UK indefinitely. He referred me to the nephrology team that day to start the process of getting me on to the deceased-donor list, and set a plan of action. However, there was a plus side to this devastating news. He said that once I had had both transplants, if all went well, it was likely I would one day be able to carry my own baby.
“That side of the news was great, but the shock of not going home was too much for me to take on board. I was crying hysterically and called Tom in Dubai to tell him everything and then told my sister, brother and Tom’s family too. It was so emotional for us all – my main memory of that time was being heart-broken that Tom was in Dubai and I was stuck in England with this huge life-changing news and no idea what it meant or what was really involved, and no idea how I was going to cope.
“Luckily my Dad was with me and I have some amazing family and close friends in the UK who rallied around and kept me positive and upbeat. A few hours later, we met Dr Rachel Davison who went over everything in detail. She explained exactly what was happening with my kidneys, the effect the diabetes had had over 28 years and then what was to happen. I had to start dialysis, get on the donor list and start seeking out living-donor options.
“In July, I started peritoneal dialysis which, out of all of the options explained to me, seemed the one that would give me a little bit more freedom and let me live as normal a life as possible. The dialysis was harder than I had anticipated, but it was my only option, so I learnt to deal with it the best I could. Shortly after I started dialysis, I began to feel more unwell. But with my dad with me all the time, family and friends around me every day and Tom coming to visit me at every opportunity, the only option I had was to be strong. It’s all I knew how to be, thanks to Mum.
“Dialysis was a pretty big hurdle to get over for me. Every night, I had to set up and connect myself through tubes in my abdomen to a machine, which we nicknamed ‘Dave’. The whole process took eight hours every night. In all honesty, it was uncomfortable and really hard to sleep, so I had a lot of sleepless nights, daytime naps and watched a lot of TV.
“While on dialysis, I was going for regular check-ups, which included lots of blood tests to monitor my kidney function. The results showed that they were still deteriorating despite being on dialysis. I was following a strict diet to keep my sodium levels up and potassium levels down, but I was feeling worse each week. I was exhausted and fed up because I wasn’t able to live my life as everyone around me seemed to be doing. I was so envious of everyone and finding it harder and harder to be away from home. It’s hard to put your life on hold and just spend the days trying to keep yourself going. I fell ill a few times and also developed an umbilical hernia, which was awkward and restrictive in everyday tasks. Just washing my hair some days seemed too much and I slowly ran out of energy.
“Thanks to Tom’s positivity and endless encouragement and just letting me cry on his shoulder (literally) I soldiered on through.
“While all this was going on, I was given consent forms for any family and friends who wanted to check if they could be a living donor match. My brother, sister, Dad, Tom, brother-in-law, aunties and cousins all put themselves forward and it was narrowed down to three potentials – my brother Anoosh, Tom and my brother-in-law Barry! Being the crazy family we are, we made it fun and jokey to keep the whole thing light-hearted. On August 13, the doctor emailed the three boys to tell them which one was the closest match. Barry was the first to read his email and announced it wasn’t him. We had all assumed it would be Anoosh, so we desperately tried to get hold of him to find out, but before we got hold of him, Tom checked his mail and read that he was my preferred donor and they would like him to fly to the UK immediately to start the gruelling and extensive medical check-up.
“Obviously this was the biggest shock of all, I took it very hard and was extremely upset – as I would have been no matter who it was. I felt so much guilt. I still do now as, if it wasn’t for me, none of them would have had to be in that position and now there was a very big chance that Tom would be donating one of his kidneys to me.
“On top of the guilt, I was so anxious to share this news with his family. They are such a supportive and caring family, so I knew they would be very proud of Tom and pleased that he was the one person who could potentially save my life, and that they would see it as miraculous. But it’s hard to be the reason their son, or brother, would be doing something potentially life-threatening. I told him that he had to call and tell his mum and dad first as I couldn’t face it.
“Over the next six months, Tom had every test possible and sailed through them all. During this time, we named our one-of-a-kind situation our ‘love transplant’.
“In the meantime, I was still on dialysis and on the deceased-donor waiting list, desperately waiting for the call to say they had organs for me. I was hoping for this more than ever now that we knew Tom was my match.
“It’s the most surreal and bittersweet situation to be in. I was desperate for Tom to not have to donate his kidney, but on the other hand I was waiting for someone to pass away so I could have their organs and live. I couldn’t think about this too much, as they were my only options. I just thought of it as if it was the other way round as I would do the exact same thing.
“February 9, 2016, I got a call in the middle of the night to say they had organs for me and to make my way to the hospital ASAP. Dad drove me there while I called Tom to tell him and our family in Dubai. Tom got to the airport to get on the next available flight with his sister, but after waiting at the hospital for a few hours, the surgeon came in to say that there were a few issues and that the organs weren’t the best match for me. So the decision was made not to go ahead that night. The next morning, I got a call from the transplant coordinator to tell me they had set a date for mine and Tom’s transplant – March 31.
“Again my first reaction was guilt that Tom was going to go through this. Tom, on the other hand, was pleased as, after five years of being together, with all the ups and downs I’ve had with my health, he always said he would take it all away if he could and now he was actually going to do it. He was going to stop the suffering and make me well again. It’s been so long since I knew what it felt like to be well and I had just gotten used to being as well as possible.
“The week before being admitted into the hospital, we celebrated my birthday and both our families came over from Dubai to be with us. On March 28, the day before I was to go in, we were all together making plans to have a nice day. One of the most important things to me was to go and visit my mum’s grave and say bye to her one last time before we had the operation. Just Tom and I went and, while I was standing talking to her, what I didn’t know was behind me, in the pouring rain, Tom had got down on one knee and was holding an engagement ring! I turned around to leave and saw Tom. I wasn’t sure what he was doing, then I noticed that his eyes were filled with tears and there was something in his hand, and he said, “Zhineh will you marry me?” I was in total shock. I looked back at my mum and then turned around and screamed ‘Yes!’
“It was the very last thing I would ever have expected, but was the most perfect. I felt like I was going to burst.
“Tom had timed it perfectly. We had so much to celebrate and we had a great day and night with everyone. We were all thinking about what had just happened and not what was about to. It was a perfect distraction for us all.
I skipped into the hospital the next day only wanting to talk about our engagement and my sparkly new diamond ring. I’m pretty sure I was still smiling while being operated on! It was by far the best medicine for my recovery.
“Waking up after the operation, I can honestly say I felt better than I ever had. However Tom had a bad reaction to some of the medication and there was a hiccup with his pain treatment. But within three days he walked out of the hospital and, a week later, so did I. Being in the UK together was magical. We spent the next eight weeks recovering with the most amazing support and love from our families and, with so much to celebrate, we were happier then ever.
“It was also the longest amount of time Tom and I had spent together, since I had left the year before, so it was amazing just to be together.
“Tom’s dedication to his recovery, and getting fit and strong again, was inspirational. He is the most positive, selfless human I’ve ever come across and I honestly think he’s superhuman. He really is something else. I’ve always believed my mum sent him to me and he’s shown exactly why – and he continues to do so every day. My hero.
“I had to wait six months before I could fly internationally, so the countdown to coming home began.
“We’re three months away from our wedding now and it’s been so much fun getting things organised and making all our dreams come true. So far they have. The sky is the limit and there is no looking back. The past 18 months have been the toughest of both Tom’s and my lives, but everything we have to look forward to and want to do is worth every hard moment we went through, and makes everything that extra bit special.
“He had my heart from the first time we met and we now share a kidney. And, because of him saving my life, we now have forever together.”