Patients’ Journeys

Sabina’s Story

I was born with congenital renal failure, blocked ureters and constant infections,which lead to my right kidney enlarging and being infected. I was only 2 months old when I had my right kidney removed.

For the first few years of my life I had alot of operations from having a hole made in my stomach where urine constantly came out and wearing nappies to having urostomy bags for most of my school life in Kenya. It was very embarrassing for me I was bullied alot and made to feel like I was the only one who had kidney problems. It was only when I came to London after my GCSEs that I met young people like myself going through the same emotions mentally and physically.

It was than that the doctors told me that my left kidney had failed and I needed a transplant. All I remember is being very ill with infections, high fevers,sickness, alot of weakness and losing alot of weight. After spending alot of time admitted in hospital I started hemodialysis.

Because of all the complications I had in my early years, I didn't have a growing bladder and without a bladder having a transplant was impossible. In November 2000 I had my bladder reconstruction surgery and I had no more holes in my stomach no more urostomy bags and that definitely gave me alot more confidence.

In 2001 my amazing mother went for all the tests to be a donor and we were a perfect match. I can't thank my mum enough for all that she has done for me all these years. I had my kidney transplant and I was on the road to recovery. 3 years later I qualified as a beauty therapist.

I always wanted to make my parents proud and to show everyone that having kidney problems didn't stop me from doing anything. I always dreamt of having my own beauty business and although my family were worried about my health, I started my business in St Paul's. It was definitely one of the happiest and proudest moments in my life.

Unfortunately towards the end of 2015 my consultant told me that my transplant was failing. I remember telling him I never want to go back on dialysis. In Feb 2016 I had a seizure in my sleep and my mum found me in a pool of blood. I had never experienced this before and luckily I recovered well. from than on I was back on dialysis 3 times a week.

I was slowly giving up hope of having another transplant when on 15 September 2019 I got THE CALL and I had my second transplant. To this day I can't explain the emotions I felt the day I got the call. I can't thank the donor and his family enough and to the amazing doctors and surgeons who saved my life once again.

Thinking back to when I had the seizure lost my business and freedom I felt like everyone had moved forward whereas I moved back 20 years. It is very hard being the only one in my friends circle not married. It's upsetting being judged or rejected because of my health and that really used upset me and it made me distant from my brother's sisters and friends. I'm generally a very strong and positive person but same days even that takes over you. When you have kidney failure you go through alot of depression and it takes alot to be strong for yourself and family.

For someone who didn't have any confidence, I have helped others of all ages stay positive and have the faith that things do get better. That's one of the main reasons why I decided to become a volunteer peer educator for kidney research UK. I want to work with organisations to help raise awareness in schools colleges and local communities about kidney disease and the importance of organ donation. I feel it is important to educate people about supporting, understanding and helping other people like myself with kidney disease. During my time on dialysis I wrote blogs about my life, have been on national radio talking about organ donation and also written an article on BBC. I am a happy smiling person no matter what I've been through and I want to spread the smile and help as much as I can.

Sabina Saeed