Andy's Story

Here is Andy’s story below, written by himself. I have the honour of sharing it will all of you!

Before you read my story, I’d like to give a big thank you all of the NHS staff, my family and friends that have helped me and continue to support me through all the difficult times in my life. I wouldn’t be where I am without you.

1. Baby/Childhood

I was born on 24th March 1988 in Norfolk and Norwich Hospital. Age 6 months, I became very ill and my Mum said I went grey like ET. I used to spend all day screaming therefore the GP diagnosed me with colic. Mum thought it was something more serious, so she took me to the hospital where they discovered that I had a disease called HUS (Haemolytic Uraemia Syndrome) which caused my kidneys to start shutting down. The hospital put me on intense dialysis for 6 weeks which gave my kidneys a rest and time to recover some function. My kidneys got to 11% function which was good enough for me to be discharged from hospital and go home. After which I had a relatively normal childhood other than numerous medications.

2. Transplant/School years

At age 11 I had a live donor kidney transplant from my Mum. Everything went well straight off the bat, the transplanted kidney took very well to my body and sustained me throughout secondary school. However, because of the steroids I put on so much weight that my friends didn’t recognise me which was very different to begin with. Once they realised that I was regular old Andy things pretty much went back to normal, they became very protective over me and helped me look after my new kidney. At age 14 I was a victim of bullying, due to my weight and the fact that my medications changed my appearance. I gained thick black eyebrows and hairy chubby cheeks which only made the bullying worse. I didn’t let this get me down too much and tried to maintain my positive mental attitude as my kidney was working well. Unfortunately, aged 16 I got shingles which caused my body to reject the kidney.

3. PD

I was then told by the hospital to choose between PD (Peritoneal Dialysis) or HD (Haemodialysis). I choose PD as I didn’t have to go to the hospital 3 times a week for 4 hours at a time, I could just do it whilst I slept which meant evenings in watching the some of the most beautiful football to have ever taken place in this country, Europe and you fine sir would have made it in the invincible era thank you. I was getting good dialysis on PD for 6 years until I contracted EPS (Encapsulated Peritoneal Sclerosis), resulting in me having to have a fistula put in my left arm as I wouldn’t be able to do PD anymore and would have to swap to HD.

4. EPS

The EPS caused my peritoneum to fuse to my bowel which then caused my bowel to stop working. I was admitted into Adden Brookes Hospital in Cambridge where they specialised in bowel surgery. I spent my 23rd Birthday in Adam Brooks and a further 6 months after that where I had roughly 15-20 surgeries to remove my peritoneum, which helped my bowel to start working again. During this time, I began HD through a line in my chest, while my fistula developed. I was then deemed well enough to go back to Nottingham. I spent another 3 months in Nottingham City Hospital, within my time here I had various trips to critical care due to some severe infections. Thanks to the hard work and effort of all the Nottingham City hospital staff, I was discharged in November 2011. In December of 2011, my family and I were invited to spend Christmas and New Year with the Bingham family, this is where I met Rebecca who later became my soulmate, best friend and wonderful wife.

5. HD

For the past 8 years I’ve been on HD, 4 of which I dialysed at home using the help of my wonderful wife. We had to learn how to set up and programme the machine, as well as learning to needle. When we were dialysing at home, we had a lot more freedom and flexibility. Everything was going well until March 2017 when I contracted a Staphylococcal Infection. I was an in-patient for 3 weeks at Nottingham City Hospital. In that time, I developed various abscesses all over my body, one of which was in the back of my brain.

6. Brain Haemorrhage

After the 3 weeks I was discharged with antibiotics, and I began to feel well again. Unfortunately, on 25th April 2017 I woke up, went to the bathroom, and experienced a sharp pain in the right side of my head. After having a seizure and being rushed to hospital I was diagnosed with an intracranial haemorrhage. I was immediately rushed into surgery where they performed a craniotomy. I then spent 9 days in ICU at Nottingham QMC, where I had a tracheotomy fitted. I was then deemed well enough to be moved to Nottingham City Hospital, where they could try to get me out of my drug induced coma, as they are more specialised in dialysis. At Nottingham City Hospital I spent a further 2 months in critical care with various infections, one of which was in my lung which required surgery to remove a pocket of infected fluid. I was unaware at this point of how the brain haemorrhage had affected me. Later I found out that I had lost the use of my left side. Eventually I was discharged from critical care.

7. Life now

After I was discharged from critical care, I spent just over a month on the Carrel ward, which is a high dependency renal ward. Within my time on the Carrel ward, I was able to have my tracheotomy removed due to my breathing improving and I started being able to eat again. However, I was then rushed to surgery again due to internal bleeding, which turned out to be caused by an ulcer in my oesophagus. From that point on everything seemed to pick up and I seemed to be on the road to recovery. Eventually in August, I was transferred to Linden Lodge to begin my intense rehabilitation. I had physio 5 times a week and occupational therapy weekly. This continued for 6 months, until I was able to have days out to spend time with my family and friends, including a weekend away at Christmas. Finally in January 2018 I was well enough to go home. During my time at Linden Lodge, Rebecca had to move to a bungalow as my limited mobility would make me unable to use the stairs at our previous house.

Rebecca and I were due to get married on February 4th 2018, which gave me a target to work to for being able to walk as I really wanted to able to walk my new bride back down the isle – which I did successfully, and the day was everything we hoped for and more.

I am continuing my rehab at home and as an outpatient at Linden Lodge. My progress is good as I no longer need a walking stick, just the hand of my wife. We are now settled in our new home, and we are working towards dialysing at home once more and getting back to a relatively normal life. I have been waiting for a kidney for 14 years and have now been told I need a live donor due to the numerous surgeries and complications that I’ve had. Despite everything that I’ve been through, I’ve managed to keep a positive mental attitude and I am still holding onto the hope that I will get a kidney one day and be able to live my dream and travel the world with my wonderful wife.

After having my decade old fistula fail and stop working during the Covid pandemic I have had. The first of two surgeries to form a new fistula. The dissolvable stitches in my wound decided to dissolve too quickly before my skin had healed so my wound reopened. which Rebecca then had to take care of and look after, it’s almost fully healed now.

8.A new phase of Dialysis.

Me and Rebecca have just finished my week of trialling nocturnal Dialysis. I can say I feel really quite good so I’m going to go ahead and do it. This way I can dialyse slower overnight which will take it a bit easier on my body. Hopefully, it will leave me feeling better in myself Plus we will have our whole day free. Best case scenario, I’m feeling better physically and mentally which will hopefully leave me in a position to look for work.