Sean's Transplant Journey
“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.
Transplant Recipient Megan
My name is Megan, and I am a 26 year old PhD student in the School of Nursing and Midwifery at Queen’s University Belfast. Looking at me, you would think that I am a regular young adult who loves food, powerlifting and likes to live life to the full. Though there is a very specific reason for this.
The story begins when I was 5 years old, when I was lethargic, yellow in colour and extremely thin. I was sleeping constantly to the extent that I couldn’t even dress myself for school in the morning. My parents were understandably, extremely concerned and kept taking me to the General Practitioner. This continued for around 8 weeks, continuously being sent home with constipation, until my bloods were done. I was then sent to the paediatric unit at my local hospital, who again sent me home, until that evening when we received a call to go straight to the Royal Victoria Hospital for Sick Children.
Since I slept for the majority of the journey, all I remember was being carried by my dad and looking over the back of his shoulder as the door to the ward got further and further away. That little child knew something was wrong and was very scared, but she didn’t know how bad things really were.
My creatine was in the thousands and my haemoglobin was 4.2g/dl. My consultant who was on call that evening said that “those results can’t be right, that child can’t be alive,” when she heard them. I was at deaths door and it was a miracle that I was still alive.
The anaesthetist refused to take me to theatre because I was so ill for 3 days until my consultant said that it was “now or never.” So off to theatre I went for a PD dialysis catheter. I was on dialysis for 24 hours at the beginning, but this decreased to 12 hours every night, apart from a short period of time that I was on haemodialysis instead for 4 hours, 3 times a week.
I found haemodialysis more difficult, from missing school to feeling even more tired from not being dialysed as regularly so I went back onto PD. I only ever had one call for a transplant, 7 years after I was diagnosed. I remember my parents telling me on my 12th birthday that I was finally getting my kidney.
I have now been transplanted nearly 15 years but there have been some difficult times throughout the years. For example, I had unknown sepsis during my undergraduate degree and I personally really struggled mentally with COVID and a fear of going out even 2 years after it.
Thankfully, I am able to use all of these difficult times to work on something beneficial. I started my PhD in October on a project that is researching sexual dysfunctions in chronic kidney disease. The project aims to use co-design to improve sexual health awareness and reduce stigma among patients, partners, and healthcare professionals involved in renal healthcare and to develop a strategy to embed sexual health support in renal healthcare. This will be done by exploring current practices and challenges of sexual health care with stakeholders to frame the issue and analysis will be conducted to gain an understanding of the issue and how interventions would best be implemented.
I have always wanted to help those with kidney disease coming behind me and now I believe that I am starting to make that difference. My transplant saved my life and is allowing me to be able to carry out this work and also live my life to the fullest. I am getting married in April to an amazing man, who is so understanding of the daily tasks that are part of my routine through having a kidney transplant and I have been able to travel the world. I got to go to Disneyland, which was on my bucket list, visit family in Canada and go to the Christmas markets in Vienna. I wasn’t able to do any of that before my transplant and I am forever grateful for my amazing gift.
With the wedding coming up, I have been reflecting on my life and when I think of the little girl who was fighting for her life to the women that I am becoming, I start to get emotional. I always wondered if I would be here and doing all of these amazing things and because of my donor, I am. I can live my life and make the difference for renal care!
David’s Gift of Life
Hello my name is David Reilly I am 63 years old. I was asked to go down to the renal unit and speak to a doctor as I have mental health issues. After speaking to the doctor he asked me to see a professor. The professor heard me wheezing and told me I had two years too live on dialysis.
A few weeks later I got a letter to start dialysis treatment. I was on dialysis every day which made me very ill. The nurses were very helpful and couldn’t do enough for me.
On my first year on dialysis I was hospitalised with pneumonia and sepsis. The odds were stacked against me, but I managed to pulled through it. Then a year later I tested positive for Covid-19 and cellulitis in my legs. Again I got through this.
I discussed the downside of being on dialysis with my wife, as I was always feeling unwell. I wasn’t sure how long I could do it and even considered stopping it, knowing what that would mean.
One Wednesday when I got home from dialysis I got a phone call to go to Ward 11 South immediately… they had found a kidney match for me! I was thrilled. At 4.00pm that day I went to theatre my transplant operation and have never looked back!
My transplant gave me a second chance at life and means I can see my grandchildren grow up. I will be forever thankful to my donor, their family and the doctors.