Life Stories

Sarah’s Journey

30 December 2018

I’m privileged to be alive, a gift not always given to everyone – like Noel and those whose wait for an organ transplant is just too long. I just want other lives to be saved as mine was.

I was born on 16th November 1972 in Beaconsfield, Buckinghamshire.  At first glance the only thing that seemed to be wrong was that I was born with a double cleft lip and palate.  However, because I wasn’t putting on any weight I was transferred to Stoke Mandeville Hospital in Aylesbury.

After undergoing initial tests, it was discovered I had bladder abnormalities and I was transferred to Great Ormond Street Hospital (GOSH) on 12th December where, at just over one month old, I had a uretorostomy (bringing one ureter to the surface as they were distended).  I remained in hospital until the end of January and then returned to GOSH the following month for the repair of my lip.  In October 1973 I again returned to GOSH for an operation to reconnect my ureter.

On 8th March, I was back at GOSH for my first operation on my palate before having further surgery on my nose and my lip.  Due to the cleft lip and palate I also had issues with my nose and ears so treatment and surgery on these were a regular occurrence.  During those formative years, I was in and out of GOSH for surgical procedures, either on my bladder or to correct my facial deformities.  On a couple of occasions I was blue-lighted (with police escort) to GOSH with severe urinary infections.

In 1982 I underwent major surgery when I had both my ureters diverted from my bladder into my bowel – a uretosigmoidostomy.  This was not pleasant; it was like having an upset stomach every time I went to the toilet; not insignificant when at school.  In the mid-’80’s I underwent a couple of “nose jobs” to correct the nose structure.  I liked Demi Moore at the time and asked for a nose like hers – but it didn’t come out like that!  I returned to school with two black eyes and my nose and forehead in plaster; I looked as though I had been in the ring with Frank Bruno and lost badly!

Throughout all this time I was in and out of hospital with severe infections and there was pressure on my kidneys as I was losing salt due to the uretosigmoidostomy.

In 1988 it was decided to reconnect my ureters to my bladder.  Bowel was used to tighten my bladder neck and enhance my bladder.  I then needed to catheterise myself every three hours through my urethra.  At last I felt a bit more normal!

When I first met my adult urologist in 1990, the first thing he said when he examined me was that he had found a lump.  I had an ovarian cyst the size of a grapefruit, caused by the same deformity affecting my cleft lip and palate and affecting my womb.  It’s like an imaginary line going down through your body; anything in its way never joined up, ie cleft lip, bladder and womb.  I underwent major surgery to have that cyst removed, but as it was such a mess I lost not just the cyst, but my ovary and fallopian tube, as well as having my womb refashioned.  I was told I could have children but would need to be closely monitored and in hospital for the last few months of pregnancy.

From 1990 I was working up to major surgery on my mouth.  Due the cleft lip and palate repair in my formative years my top jaw had stopped growing so my profile was not good and there was risk that it could affect my bite.  I had to undergo two years of dental preparation with regular trips to GOSH from my home near Brighton.  In January 1993 I had major surgery on my mouth; they broke my top jaw, inserted one of my ribs and moved the jaw forward.  I had a metal halo on for ten weeks and my jaw was wired for six weeks so I had to use a syringe to feed myself with liquidised food.  However, I lost no weight during this period!  I had to go up to London every week to have the screws that were resting on my skull tightened.  When it was removed I couldn’t remember how to eat – but I soon made up for it!  I looked great for the first time and my confidence was high.

With my self-confidence at an all-time high in April 1993 I met someone who would mean so much to me: Noel.  He was a perfect gentleman and we got on like a house on fire.  However, after our first date he brought me home and, as I shut the door from saying goodbye – whoosh – the surgery that I had had in 1988 had failed.  I would have to undergo surgery to repeat the operation as other surgeries and medication were not working.  I was now in my early 20s and back to having wear incontinence pads etc as my bladder had completely failed.  Noel was great about it and said he would be right beside me, along with my family and friends.

However, on 20th October 1994 my world fell apart when Noel passed away from meningococcal septicaemia.  I only had spoken to him the night before and he had complained of a cold, but this was nothing unusual.  I was at work when the news came through; I was distraught.  I launched into fundraising and awareness about this dreadful disease the day after his funeral.

I was due to go into hospital for surgery in January 1995.  Due to my grief I had started to write to Noel every night before bed; the night before my surgery I wrote “I hope to see you soon” – I didn’t want to come out of surgery; I just wanted to be with him.

However, I awoke from the surgery, but as the days continued I knew it had failed.  The following year I underwent a procedure called a mitrofanoff, where the appendix is used to create a conduit between the skin and the bladder and you empty the bladder using a catheter.  My urethra was also cut in two, so I could not leak.  Therefore, the only way I could go to the loo was through this new opening.  I have had few surgical procedures on this since then, but at least it works!

In early 2001 I was told that my kidneys had dramatically lost function and I was looking at kidney support, whether it be dialysis or transplantation.  I was transferred to Royal Sussex County Hospital, where Noel had passed away.  I didn’t want to be there, but there was no choice.

At the end of that year I had a fistula made in my arm to accommodate the big needles required for dialysis.  Due to all the surgery I had had I could not do peritoneal dialysis so I had to undergo haemodialysis.  Three times a week for 4.5 hours I was attached to a machine whilst my blood was taken from my body, washed and then returned – ie the job of a kidney!  I was fortunate I could do it at home thanks to my unit being one of the first to have home haemo, as well as my parents morphing into Dr and Sister Jones!  I was also on a strict diet and a fluid restriction – I was only allowed 500 ml of fluid a day (now I have to drink around three litres a day!).  Sadly, my fistula failed after a couple of years and I had another one made, but that never worked, despite them operating on it a couple of times.  So I had a line put into my neck to dialyse through instead.

I dialysed for five years before I received a call in the early hours of 9th May to say a kidney had been allocated to me and I should go to Guys Hospital in London.  En route to London all I could think of was my donor and his family.  I was excited that a lifeline had been given to me, but somewhere out there was a family who had lost someone, and I knew what loss could feel like.  Amidst their grief they had agreed to give life.  I went into theatre that evening and returned to the ward at 3 am with a healthy working kidney – “Kev” – and we have been happy together ever since!  I will never stop saying thank you to my donor and his family.  Every day I thank them for agreeing to save lives.  They are my heroes; without them I would not be here.

A couple of years after my transplant I started to experience major pain and pass blood which was affecting my kidney function.  It materialised that my other ovary was now completely covered in cysts. It was decided that, for my own health and wellbeing, I should have a hysterectomy so this was carried out in my mid-late thirties.

So, that is my story.  Without the expertise of all the medical teams at GOSH, UCLH, RSCH and Guys, and the courage and strength of my donor family, I would not be here today to try and encourage everyone to talk about organ donation and share their wishes with their loved ones through my work with LLGL.

I’m privileged to be alive, a gift not always given to everyone – like Noel and those whose wait for an organ transplant is just too long.  I just want other lives to be saved as mine was.

At the heart of organ donation is a conversation with family members about your donation decision.  Ultimately, it is the family who will carry out the individual’s wish – so they need to know your wishes.  Please – LIVE LIFE GIVE LIFE.

Sarah Jones

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