Daniel's Story

Here is Daniel's story, another kidney warrior from NI. He was in the same hospital I was diagnosed with the same consultants though our timings were different. I recently found out we were both at one of our consultants leaving party too. I hope hearing his story will help highlight the good times and the hardships CKD patients have to go through. Thank you Daniel for being so open and sharing your story with all of us!

"My name is Daniel O’Rourke and I am 29 years old from Belfast. I was born with congenital nephrotic syndrome. This meant that I had to have both of my kidneys taken out within the first year of my life. I was then on PD dialysis for over a year and a half before having my first transplant. I was in the Musgrave Ward of the Children’s Hospital in Belfast under the care of Dr Mary O’Connor and Professor Maurice Savage. They were pioneers in the care for children who were born with Kidney disease. Back in the early 90s it was rare for someone to have dialysis at home. Both Dr Mary and Prof Savage were keen for children to have as ‘normal’ a childhood as possible. So, my parents were taught how to do PD dialysis.

Both my mum and dad were tested to check if they were a match. My Dad’s kidney was the better match, and he was just about to go in for the final tests when my parents got the call that there was a kidney that was a good match for me available. This came from a deceased donor. We were not given a lot information about him, but what we do know is that he was 14 years old, and he died in a car crash. On November 17th, 1995 and the age of 3 and a half I had my first transplant. My family and I are forever thankful to the selfless decision his family made that saved many lives including my own.

In May of 1997 at the age of 5, I was diagnosed with Post transplant Lymphorolifative Disorder (PTLD). I have very limited memory of this time. However, from speaking to relatives and understanding more about my medical history as I got older, this was an extremely worrying and traumatic time for my family. Back in 1997 PTLD was not widely known. The Doctors who were looking after me in the ICU had to make a call and that was to take me off my immunosuppression in order to allow my immune system to fight the disease. They also had to fly in medication from the Netherlands as well. By all accounts I was extremely fortunate to recover from this.

I do not have a lot of memories of this period of time. However, I do remember almost having to start everything again and by everything I mean, walking, talking, eating etc. I have memories of being in physiotherapy, learning how to walk. I was then brought to a speech and language therapist to help me speak and read again.

From this point going forward I was extremely fortunate with regards to my health. I had by all accounts a ‘normal’ childhood. The only time I felt ‘different’ to everyone else was when someone in my class had chicken pox and I had to go to the Musgrave ward and have the ‘zig zag’ injection.

I remember when I was 17 years old the Children’s Hospital started preparing me for the move to the adults hospital. I started going to hospital appointments on my own. This was very strange for me as my mum had an encyclopaedic knowledge of my medical history and if there was anything, I wasn’t sure I about, my mum always knew the answer. I started to learn more about my medical history at the this point so I could understand it and be able to explain it to future Doctors and medical professionals. It was at this stage I started to really get an understanding of how much my parents went through looking after me.

When I left school, I went to study Music in University of Ulster. I started really enjoying music at around the age of 13/14 in school. My main instrument is/was guitar. But I also really love playing, piano, drums and singing. Music has been a great outlet for me, and I would be lost without it.

When I finished my degree, I went to University of Bath to study social work. My medical history has a huge part to play in why I wanted to be a social worker. When I was younger, Dr Mary used to ask me to speak to families who had just found out that their son/daughter needed a Kidney transplant. Dr Mary would often bring me into a room with them and talk about their concerns and worries. When I look back on this and realised that I wanted to do more of this, I found that social work would be the best profession for me.

I started this my Social Work Degree at the age of 21. After doing my music degree for 3 years and going straight into social work the next academic year I felt myself burning out. I took a year off in between my first and second year. It was at this stage I found out from Dr Courtney that I would need a second transplant. From the moment I met Dr Courtney she always said to me, ‘Daniel your results are good, but in the future, you are going to need another kidney.’ Due to denial I never really took this on board. It wasn’t until I asked Dr Courtney what my kidney function was, it started to become real for me. In January of 2014 I was told that my Kidney function was around 33%.

I did notice over this time that I was beginning to get more and more tired throughout the day and that things were becoming difficult for me. In August 2016, myself, my mum and my Dad were brought into Dr Courtney’s office. I was due to start my final year of my Social Work degree in a month’s time. Dr Courtney said that I will be able to finish my degree, but it will be tough. At that stage my Kidney function was around the 17% mark. Dr Courtney spoke to me and my family about organ donation. My Dad, Mum and my Uncle heroically stepped forward. My Mum and my Uncle were a 5/6 match and my Dad was a 6/6 match. The following months were very tough. I started getting more and more symptoms of Kidney failure. I was sick most mornings and I was losing a lot of weight as there was a tear in my kidney which meant that it was leaking protein. I was having iron infusions and EPO injections all with the view of getting me to the end of my degree.

In January 2017 I was starting my final placement in a drug and alcohol service. Myself and my Mum met with Mr Brown the Kidney transplant surgeon in the Belfast City hospital. We aimed to have the transplant by June 2017. Throughout the following months I was back and forward from Bath to Belfast for tests. I was put on fortisip drinks because I was losing so much weight, my EPO injection dosages had been increased and I had about 15 tablets to take each day. I seemed to have tunnel vision at this time. I just had to keep going. I wanted to finish my placement. In May we got the magic call that my surgery was booked for the 6th of June 2017.

On the 2nd of June I finished my placement. I had a creatinine of 500, a gfr of 10 and a haemoglobin of 7. I remember getting a 6:30am flight back to Belfast with all of my belongings. That morning I had to increase my immunosuppression dosages so that my immune system could be suppressed sufficiently for my transplant. I remember this made me very sick. On the 5th of June we went to Belfast City Hospital for the transplant. On the night before, Dr Courtney and Mr Brown came in. They said, ‘We have a little issue.’ They were due to put my new transplanted kidney on the opposite side of my first transplanted Kidney. However, due to the fact I was very sick when I was a child and I had multiple central lines, most of the veins on the side where they wanted to put the new kidney could not be used. They had to take my old kidney out so that they could put the new kidney in. This was an extremely emotional time. In the back of my mind I thought, ‘I don’t want them to take my first transplanted kidney out, it was such a huge part of my life.’ I had to sign a document stating that I was happy for them to put me on dialysis if the new transplanted kidney did not work instantly.

On the 6th of June I had my Kidney Transplant, and it is a day I will never forget. The team in Belfast City Hospital looked after, me, my dad and my mum so well. Three days later I was discharged back home to begin my recovery.

In the months and years that followed, I finished my dissertation for my Social Work Degree and Graduated in December 2017. A month later I got my first Social Work Job with Bristol City Council. I met, my now amazing fiancé, Beth and we are due to get married next year, August 2022. I am forever grateful to the people who have helped me to be where I am now. Transplant life comes with its challenges not just for the patient but for their loved ones too. I try to live each day as best I can. Over the last number of years, I have learned how important it is to look after your mental health. Mental Health and Physical Health go hand in hand, and one cannot thrive without the other.

Thank you for reading this and I hope this gives you an idea of transplant life and thank you to Megan for asking me to do this it is such a wonderful blog."