“Sean’s story began in September 1989 when he was just 9 years old. Martha and I (Sean’s Mummy and Daddy) arrived home from being out to find Sean sitting on the settee looking very ill. He had been having fits. The GP booked him into the Ulster Hospital and on the way there he had two more fits.
In a short time he was diagnosed as having kidney failure. This caused his heart to go arrhythmic and stop. The Ulster Hospital staff saved his life that night. Sean, still critically ill was transferred to the children’s ward.
Sean was put on dialysis which him feel much better. He got out of hospital and was able to go back to school, while being on continuous ambulatory peritoneal dialysis (CAPD).
Sean’s school was very supportive; the principal allowed us to do CAPD in his office which was really helpful to us as a family and allowed Sean to continue to be with his friends in school.
On 9 December 1989 we received a call that a kidney was available but unfortunately it was not as good a match as it was for another boy, who was waiting longer than Sean. Understandably this kidney went to him. Then on 12 December 1989 we were called again and Sean was given the life-saving kidney.
Sean was quite ill after the transplant and had to get dialysis. However, with other medication he was able to leave hospital in the New Year. Sean’s kidney is still functioning well after 32 years. He is now married to Una and lives a normal happy life, enjoying travelling the world on holidays.
We will always be grateful to the donor and his family together with the staff at the children’s hospital and the transplant unit.”
“Alfie was just 1 week old when we rushed him to hospital in an ambulance after slipping in and out of consciousness. I remember the moment like it was yesterday. Alfie’s dad was giving him a bottle before he settled down for bed. I remember him shouting that he wasn’t breathing. My nightmare had just started to unfold.
My mum lifted Alfie and stared to do CPR to help open his airways. My sister rang the ambulance explained our emergency and after the longest five minutes of my life the ambulance team had arrived and reassured us that Alfie had started to come around, and started to breathe. If it wasn’t for my mum I would have been lost. I look back and I am so thankful I was living with my parent’s then. I was just 19 when I had Alfie, still so young.
We got Alfie to the hospital where he was then seen to by nurses and doctors who continued to examine him, He seemed to be fine on the outside but not knowing what had caused him to do this in the first place was more worrying. A few hours later the doctor came back with the blood test results. I knew by the look on her face that something was wrong. She explained that Alfie had to be rushed up to ICU. Alife was born the Stage 5 kidney disease. His kidneys were too small and did not grow properly, therefore he would need a kidney transplant.
I just remember my heart feeling so broken. I tried so hard through my pregnancy to protect him and keep myself healthy correct so my baby could be healthy too. From the moment I met Alfie’s consultant, I knew he was in great hands. I knew she had a plan to help my son in every way she could. After further treatment Alfie started the thrive and things started to turn around – he was gaining weight and keeping his fluids down.
After a few long weeks in hospital Alfie was well enough to go home. We always knew Alfie was on kind of a tight rope with his kidney function and there would be a point when Alfie needed dialysis but we managed to prolong this for two whole years with a strict routine, medication plan, fluid plan and weekly hospital check-ups, Alfie became the funniest, strongest baby boy taking on every day the best he could.
Alfie’s kidney function took a turn for the worse and he had to be rushed to theatre for a hemodialysis line to be inserted so he could start dialysis. Alfie’s consultant began the process of looking for an organ donor for Alfie. When we told our families about what was going on they were all immediately on board to get tested to find out if they could be a match for Alfie. My dad was the best match.
We began getting Alfie to his goal weight for transplant, getting him ready and strong enough for the day that would change his life forever. I’ll never forget the day his consultant gave us the date for transplant; I couldn’t wait for my little boy to start living a normal life and he could start seeing life in a different light.
The day had come and Alfie and his Granddad were both ready for the transplant. It was a whirl wind of emotions as I was worried but so happy and grateful at the same time. Alfie’s transplant was a great success. Alfie and his grandad both made a speedy recovery and were both home within a week after transplant. I can never thank my dad enough for what he has done for me and my son; not only did he save Alfie’s life he saved mine.
If it wasn’t for the amazing renal team behind me, educating me and inspiring me, I wouldn’t know half of what I know now, the nurses who helped every dialysis session and made it that little bit easier for both me and Alfie. I look back on those years of constant worry and battles we faced and look at our lives now, it blows my mind, i will never be able to put into words how much I appreciate everything everyone has done,
Alfie is now in P1 and he can attend his hobbies and visit family as often as he likes. He is the sweetest, happiest, energetic boy and lives every day to his fullest. The transplant has changed our lives. I will always be forever grateful.”
In November 2008 when I was 15 I had been walking up the Mourne Mountains training for my Duke of Edinburgh. A typical, healthy and active 15 year-old. One month later, 3 days before Christmas I had, what we all thought was, just a bad cough. However, I started to bring up some blood so I went to my GP who suggested getting a chest x-ray. At Lagan Valley Hospital A and E the results were devasting and of complete shock. My lungs were beginning to fail, and the blood tests showed I was in the final stages of acute kidney failure.
I was admitted to the intensive care unit at Belfast City Hospital where my parents were told the next few days would be critical. I was unaware of this and thought I was still a healthy 15 year old. On Christmas Eve I was started on Plasma Exchange and dialysis. “I’ll be out of hospital very soon” I told my friends. Two months later, I was still there.
When I was finally well enough to leave hospital, I still returned 3 days a week for haemodialysis. This made me very tired and I usually slept the entire following day. My diet was extremely restricted and I was only allowed to drink 500ml of fluid per day. School was very supportive although I was not well enough to return. I had home tutors and sat my A levels whilst on the dialysis machine.
15 months from the beginning of my journey I was finally well enough to receive a kidney transplant. I was extremely lucky to be a nearly perfect match with my dad. On 14th April 2010, I received the best gift anyone could ask for – ‘the gift of life’. My dad had given me his kidney which allowed me to live my life to the full. I will never forget what my family and I endured throughout my hospital journey. Whilst it was a challenging time, it was made much easier by my supportive family and the caring and amazing staff of the Belfast City Hospital.
I now live a normal life; I am a SEN teacher and love to travel the world. Whilst you would never wish this to happen, I count myself lucky. My illness led my family to grow stronger than ever and we have the perspective of how fragile life can be, knowing the importance of living life to the full. This would have never been possible without the incredible doctors who saved my life.
Hon Secretary: 078 0238 6911 Hon Treasurer: 028 9041 9201
C/O Dialysis Centre, Belfast City Hospital, Lisburn Road, Belfast, BT9 7AB