Sanjay's Story Saturday 4th July 2020 is a date I will never forget. It's the day I had a simultaneous pancreas and kidney transplant (SPK) at Addenbrooke's Hospital in Cambridge. I've been suffering with chronic kidney disease (CKD) for about four years and have spent the last 18 months on dialysis. I've been diabetic since my early twenties, so this was the consequence of having diabetes from a young age. It's been a tough ride, but I'm through it now and looking forward to the renewed lease of life I've been given. On the morning of my sister-in-law's wedding, I wasn't feeling great. I put it down to the early start and the fact I was designated wedding coordinator. Indian weddings take all day and I'd been up since 3am and on my feet. By midday I noticed that my legs felt heavy and they were puffy, but took no notice. By the time the wedding finished, my ankles were nowhere to be seen - just a straight line from my knee to my foot. I was told to put my feet up and rest before the evening's reception. Within a couple of hours my legs could fit into my suit trousers, but they were a tight fit! The following Monday I went to see the GP and he ordered blood tests. He called me the next day to say I needed to go back and repeat them. He said my kidney function was low and he was referring me to a nephrologist. The nephrologist repeated the blood tests and confirmed that my eGFR was around 50. He said this was low and asked me if I'd been suffering from any issues. I explained the swollen legs and some fatigue. He said they would continue to monitor but there was nothing immediately to be concerned about, but... I would need a kidney transplant. He explained that would probably be in 5-10 years' time, although there was no way to tell. The shock was lessened by the probable timescale, but it was still an enormous thing for my family and I to process. These appointments continued monthly but every time my eGFR would be lower. When it dropped below 30, the nephrologist talked with me again. He said that my kidneys were not stabilising as he'd hoped, so we would need to start thinking about the next stage - a transplant. This sent shockwaves through my system. I'd got used to the idea that I was going to need a transplant eventually, but just a few months from being diagnosed I was now facing a life-changing operation much sooner than I ever thought possible. Things were set in motion. I was referred to the Addenbrooke's Transplant Unit for assessment and was given information about dialysis, but the hope was I would get a transplant before any dialysis was needed. My eGFR continued to tumble. My first appointment with the transplant team was an out-of-body experience. It was surreal. I'm glad I had my wife with me. There were about four or five people in the room. The appointment took around two hours and I went through a myriad of questions about my lifestyle, the options open to me, the process of getting on the transplant register and the continued care I would be given. Since I was a young and generally fit and healthy man with diabetes, I had the option of having a simultaneous pancreas and kidney transplant (SPK), or just a kidney transplant. If I wanted an SPK it would have to come from a deceased donor, if I wanted just a kidney then there as the option of a living donor, if one was available. This was too much information for me to take in. I needed time to absorb this information and come and see them again. On my way out they gave me the consent form to look over and sign when I was ready. This was another minefield of information. My wife and I discussed this and decided that the best option was the have an SPK - though this was a much longer operation and recovery would be longer too. At my second appointment I was less of a rabbit in the headlights. What got to me about this meeting was the consent form - I was being asked to sign something where I agreed they could kill me. That's how I felt because the consent form has a box to tick that says a patient understands that there is a 1 in 50 chance they will not make it through the operation. Ticking that box was hard. The doctors said my admittance to the transplant register would be discussed and decided upon, which was another surprise - I thought you were automatically put on the register. I was accepted, then told that my wife and I should keep our phones on at all times and not to be more than three hours away from Cambridge and to have a bag packed. I was now on the list. While this was going on my eGFR continued to plummet and I was having discussion with the nephrologist about dialysis options and preparing to begin dialysis treatment. I chose the peritoneal dialysis route. This would be better for us as a family as it would allow me to continue to work; I could do dialysis from home and have time with my children. I had a PD catheter inserted into my abdomen a week before Christmas 2018. I started dialysis at the end of January 2019. My children were fascinated by the machine on my bedside table and the dozens of boxes of dialysis fluids stored in the garage. The months went by and no call came. Then, the week after my daughter's seventh birthday. I got my first call. It was about 3am and I'd had two missed calls already and so had my wife. I answered in a daze when it rung again and the lady said we have a match and would I go to Addenbrooke's as soon as possible. I was no longer half asleep. I was up, frantically trying to get my things together (I'd never packed a bag like they asked me to). My wife calmed me down and we packed, ready for the ambulance to pick me up. We said an emotional goodbye, my wife said she would come to the hospital later that day after the children were at school and nursery. We had always been open with the children about my illness, although they were young it was good for them to understand that daddy wasn't well and would need an operation to make him better. But it was down to my wife to tell our eldest that I had gone to the hospital in the middle of the night. I arrived at the hospital and made my way to the ward. They put me in a room and asked me to wait. Then a doctor arrived and went through some questions, gave me another consent form to sign (to make sure I was still happy with my decision) and then I had a number of blood tests. I was shown to my bed and asked to change into a gown, to be ready for the operation, and I waited. My wife arrived just before lunchtime. I was still waiting for any news. And I waited. This is what they don't show you in films and on TV. The waiting is torturous. There was little or no information on what was happening. This is because there's a team who are retrieving the organ, then another who will test it and then finally the team who will carry out the transplant. This donor could be anywhere in the country. I video-called my wife so I could speak and see my children before they went to bed (and in my own head in case they didn't see me again). There were very few updates to say they were doing tests on the organs. I fell asleep. I was awoken around 4am to say that the organ were not viable and I could go home. That was it. No other explanation. The emotional rollercoaster of the last 24 hours was something I had never experienced in my life. I got changed, packed my bags and got in a taxi home in time to take my children to school. It was back to normal and the waiting for the next call started again. Fast forward to July 3rd 2020 and I was dancing in the garden with my daughter when my phone rang and it was the hospital saying there was another match and I needed to get to Addenbrooke's that evening. This was my second call in a week. I'd been in the same position the week before but again the organs were not viable. So, for the third time I left for the hospital, said goodbye to my wife and kids and said I'll see them in the morning as I expected it to be another false alarm. I had every expectation that I would be back by morning. I was so wrong. I wouldn't be back home for another six weeks. This was in the middle of the Covid pandemic so admittance to the ward was not allowed until after a Covid test. The medics carried out other tests while they waited for the result of the test. The hours ticked by and it got later and later and I was expecting them to come in and say it's not happening again. But I was wrong. I was admitted to the ward and at around 9pm they told me the operation was going ahead. I was frozen. I couldn't think, talk or even comprehend exactly what was going to happen. Covid made it that more difficult as I was there on my own with no family for support. I rang my wife and told her and said I'll call her again before they took me down. I was numb and frightened. All that ran through my head was the consent form saying 1 in 50 don't make it through the operation. At 11:58pm I was in the operating theatre on the table with so many doctors and nurses around me covered from head to toe in dehumanising hazmat suits. I was petrified, more scared that I had ever been in my entire life. They placed the anaesthetic over my face. That's all I remember. I came to 10 hours later after a successful SPK. The doctors told me the operation went extremely well and that the organs were working perfectly. I spoke to my wife at 11am to tell her I was back on the ward. Then I noticed the tubes and drains and pain meds inserted in me. I felt trapped on my bed, scared to move just in case I knocked something out my mistake. Within a couple of days I was used to it and up and walking (very slowly), taking the medication stands with me everywhere I went. As the days and weeks passed, gradually the tubes and drains were taken out and I began to feel a bit better. But that wasn't the end of it. Although my new kidney and pancreas were working well, I had a number of complications during my recovery, and these took their toll. First, I had blockage, so they opened me up to clean it out. A few days later I had an internal bleed, so they opened me up again to fix it. This was scary as the doctors told me I'd lost so much blood that I was close to not making it. In total, I spent six weeks in hospital, the majority of which was spent on a HDU ward in my own room. The loneliness was crippling, because Covid meant I couldn't have visitors. I could not have got through this without the amazing, selfless and utterly brilliant NHS. The dedication and support they showed me, helping me get fit again, supporting my mental health and even just chatting with me will never be forgotten. I will always be in their debt. My recovery at home was slow. I had a problem with my bowel and developed chronic sickness which would last up to 12 hours at a time. I spent another two separate weeks in hospital trying to clear this. My family were key to my regaining my health. My wife, mother-in-law and children gave me enormous amounts of support, help and love and they deserve a special mention. Ten months on, I am feeling great. My energy levels are amazing. I love being able to play with my children again and I have a renewed zest for life. I'm still having monthly check-up appointments at the hospital, but everything is going well and I'm delighted to report that they're pleased with my progress.