04 Sep 2019

Lydia Beckett

I was diagnosed with type 1 diabetes on Christmas day shortly after my 8th birthday. My family was aware of the condition as we had a close family friend with diabetes and it was their family’s knowledge of the symptoms that helped with an early diagnosis. I have been aware of the risks and complications associated with diabetes for most of my life and was very aware that kidney complications were part of this. With close monitoring from both the diabetes and renal teams I was able to have a successful pregnancy, and have a happy and healthy 10 year old boy. My kidney function had stayed quite stable throughout this time, I just didn’t expect what was to come next.

I broke my left leg and ankle quite badly in October 2011 after falling down the stairs, requiring two plates and 23 pins. After repeated infections and course after course of antibiotics the metal work in my leg was removed. In October 2016 I spoke to the surgeon about water retention on my ankle and, on examination, he suggested having a full workup of tests as both ankles were affected, indicating it wasn’t the break that was causing the difficulties. My diabetic nurse rushed through some bloods and my eGFR was 13%. That was when my world fell apart. It was a shock as my bloods had shown some renal changes but such a drop in renal function was not expected. At this point I had a seven year old and my kidneys were failing.

I was in pieces, I was in end stage renal failure and I was close to falling apart but my little boy was what kept me going. I knew I had to be strong for him, and for the rest of my family, and that falling apart just wasn’t an option for me. Somehow I pulled myself together, dried my eyes, put on a smile and went to find out how we went about fixing this. The diabetes team and GP arranged for an appointment with the renal consultant and repeat bloods then everything seemed to happen so fast. My eGFR was within the criteria for listing for transplant so discussions became very serious very quickly, there was no time to lose. I was nervous about dialysis and the effect it would have on my life and was resistant to the idea at first, I was frightened it would change who I was and that I would lose my independence. It was the fear of the unknown and feeling like I would be handing control of my life over to other people. We discussed dialysis options and I was referred to the relevant teams at Bradford Royal Infirmary. The Renal Home Therapies Team talked me through the options for dialysis and they were amazing! They were so informative and were able to answer anything and everything, taking the time to visit us at home and allowed my little boy to visit and look at the equipment and ask his own questions, which was really important to us as a family. I chose to have peritoneal dialysis at home as I felt this was the right choice, not only for me but for us as a family. It meant that my son could get involved and see what was happening, I could be at home rather than being away for long periods of time, and I could incorporate it around my daily life while I was still fit enough to work. We even made the connection time in the evenings our special reading time and we would get into bed and have a cuddle so it became a really special time for us.

Life on dialysis can be pretty difficult but my PD machine was effectively a life support machine, it was the one thing keeping me alive and for that I was truly grateful. The support of the renal team at Bradford Hospitals was fantastic. The care of the peritoneal catheter site, the stripping down of the machine, the constant beeping and whirring, are things I will never forget but I grew to love those sounds and the routines in an odd sort of way because without them I wouldn’t be here, and that is the reality of a life on dialysis. There were days when I would sit in my coat because I was so cold, anaemic, and unable to warm myself up. I was constantly tired, catching power naps between finishing work and doing the school run, preparing meals at weekends that could be defrosted in the week so that I could function and carry on being a Mum during the week, running from guitar practice to rugby training, drama club to swimming sessions. The renal team supported me as my symptoms got worse and kidney function slowly decreased from 13% down to 3%.

Not long after end stage kidney failure was diagnosed the question of transplantation was put forward. It was decided that kidney/pancreas would be the most suitable option, and so I was listed at Manchester Royal Infirmary in June 2017. I became glued to my phone in case the transplant team called with the offer of a transplant. If I was running low on charge while I was out I had to find an outlet or charger, I slept with it, I didn’t let it leave my side! When the call finally came in the middle of the night my bag was packed and we were ready to go. Unfortunately the organs weren’t fit for transplant and we returned home. The flood of emotions was intense but we were to find out that we were to experience a total of nine call ups before receiving a successful kidney/pancreas transplant in October 2018. The emotional rollercoaster experienced every time there is an offer of a kidney/pancreas is immense. The calls tended to happen during the night or the early hours of the morning and the realisation that our joy was someone else’s sadness was heartbreaking and I always took some time during the wait for the tests to come back to think of the donor family and the difficult time they must be experiencing. Hours after arriving at Manchester the surgeons would come to speak to us and give us the sad news that the transplant would not go ahead. On our ninth call up we received the news we had been waiting so long for, the transplant was going ahead.

Transplant surgery is a serious operation but the team were fantastic and before I knew it I was being transferred to ICU. Recovering from a transplant does take time but when the surgeons, nephrologists and nursing staff told me I would feel so much better after my transplant I could never have known just how much difference a kidney/pancreas transplant can make. Within 24 hours the colour was back in my cheeks, and my energy levels were returning. It has been a journey getting the balance of medications right but I am truly amazed at how well I feel six months post-transplant. My latest eGFR is 63% and that little kidney is doing just fine! Going through something as life changing as a kidney/pancreas transplant can make you realise you have to take every opportunity to say ‘yes’ and get out and do the things you never had time for or didn’t think to prioritise before. My favourite part of my day is increasing my fitness levels while walking my little boy to and from school, having a catch up and holding hands. It’s the little things in life that you learn to appreciate. We trained together for a 5k event to promote awareness of organ donation and to raise money for Kidneys for Life completing a very muddy 5k Junior Warrior in Leeds and he raised over £1,500!

I have the utmost respect for the nursing staff and the doctors who cared for me during the time I spent at Manchester Royal, and I am in awe of each and every one of you. I have made an amazing friend who has been through transplant and she has been my lifeline; truly understanding what I am going through, treading the same path day after day, our lives will be entwined forever. There will always be a special place in my heart for Raman Dhanda, the most brilliant surgeon who has saved my life. He has not only treated me with respect and dignity but also took great care and respect of my donor. He is a wonderful man. I just hope you truly understand the difference you make to people’s lives each and every day. Thank you.

Through all of this my partner has been my hero. He has done the job of two parents, while managing our house, going to work, holding me together and being an amazing Dad. I don’t know what I would do without him. We made it through the worst of times because we did it as a family and we can look forward to a happy future full of energy and hope.

Whenever I think back to that day in October 2018 I can’t help but remember it with both happiness and sadness. I will always be grateful to my donor and her family for the gift I have been given and I think of her, hoping I am making her proud. Organ donation has a ripple effect, it has saved my life but it has also helped my son grow up with a Mummy, our family grow together, and the ripple effect of saying ‘yes’ has touched so many lives.  I hope one day to meet my donor’s family in the hope that they too can see what a wonderful gift they given. I will be forever grateful.