Fez AwanTransplant Patient
“I was born with a degree of renal failure due to reflux, a blockage between my bladder and urethra, which also caused my bladder to swell. The first attempt of correcting this at 6 weeks old proved unsuccessful but due to loss of blood during the procedure meant I also received my first blood transfusion at that point too. A second attempt at 9 weeks old again proved unsuccessful. A third attempt via a cystoscopy a week later was undertaken and also, due to me being a Muslim, my circumcision was also done at this time. I also had an NG tube fitted so all my nutrients were given through there. I weighed approximately 3kgs.
My First Year
At 3 months old I then had a Vesicostomy so I would hopefully just drain into my nappy. A vesicostomy is a surgical opening in the bladder to the outside of the body, (lower belly) that allows urine to drain, preventing urinary tract infection or damage to the kidney. At 4 months old I had a Ureterostomy. A ureterostomy is a surgical procedure that creates a permanent opening in the urethra, commonly to remove obstructions to urine flow. I now weighed approximately 4 kgs.
I was admitted a day before my first birthday for diathermy of urethral valves, and my vesicostomy was closed where my kidney function was about 10% with my left kidney working better than my right kidney. I now weighed approximately 8 kgs.
My first Christmas was spent in hospital and my ureterostomy was closed By the end of the following August I finally used my bladder the normal way for passing urine. Apparently I cried most of the night due to not being used to having a full bladder.
On 4th January 1989 a PD catheter inserted for dialysis to be started whilst at home undergoing treatment 4 times a day, and in the April, at the age of three, I underwent my first transplant. I suffered from severe rejection 10 days post-transplant and was treated with methylprednisolone but due to no improvement was put on more medication ATG for a further ten days.
I finally had my first meal of my life with real food – chips and chicken, and it seemed the right choice. I was discharged on the 1st May with my PD catheter being removed on the 8th of August.
In 1993 I was getting many UTIs, and it was thought my original kidneys may be causing the infections, as well as due to my enlarged bladder urine wasn’t being completely emptied, so I had an operation called Mitrofanoff. Fortunately, in my case the opening for this was in my bellybutton which meant it was well hidden, but this meant I had to catheterise every 4 hours to make sure the bladder was getting completely emptied. Due to the opening always shrinking it was decided that a catheter with a balloon on the end would be placed in the bladder, so it remained in situ all the time to combat the shrinking. Around this time is when I really started to notice I was “different” to others from my peer group at school. Having to leave lessons to go to the bathroom, having time off for UTI’s and having a tube sticking out of me was starting to have an effect on me.
In 1994 aged 8 I had my original kidneys removed as the UTI’s were continuing despite regularly catheterising and emptying my bladder. I was now aged 9 and being on cyclosporin was really starting to make a difference as one of the side effects was hair growth. Therefore being 9 and having more facial hair then other boys my age made me stand out, so the name calling and bullying really stuck in my head from around this age.
Transplant from Father
I started high school in 1997 and this felt like a fresh start. Some of my fellow pupils from my primary school were also there so couldn’t escape the fact that some people knew I was different. Of course, kids talk and the ones that knew me from primary would talk to other kids etc and news spread that I was “different”, and I got labelled as the kidney boy to the one who can’t pee.
My transplant started to fail around the age of 13/14 and the decline was slow. I was told I would need to start dialysis, so a PD catheter was inserted around February time. Once healed I was back in hospital for PD training so I could use the machine at home. This also meant falling behind at school and, well I was out of sight so out of mind of the other kids at school. Although there was a small number of friends that really knew what was going on and why I was absent from school.
Nightly PD meant I had to be on the machine early so was ready for school the next day. This meant I missed lots of the socialising with my peer group, so no going out to play footy, cinema trips, going to birthday parties etc. Though I could always use it to my advantage & set the machine timings to miss certain early classes such as PE.
On May 4th, at the age of 14, I finally received my father’s kidney as he had started the work up from when I pretty much started PD almost a year and a half previously, so in a way I was lucky to only have to do PD for 18 months.
The date was set but the day before received an unexpected phone call to say there was a potential kidney available. Went in to hospital but unfortunately it wasn’t a match but on the bright side I was receiving my dad’s kidney anyway the following day!
During the transplant surgery my lung collapsed, and my BP dropped. I was put on a ventilator in ICU and by the evening of the following day I was back on the ward. My pre transplant creatinine was over a 1000 and at discharge it was 95 so I couldn’t have been happier.
I was discharged on the 19th May and back to school by the 23rd and determined to to start catching up on all I had missed which was a lot especially during those important GCSE years.
The first year of the transplant was quite traumatic as I had a few episodes of rejection and managed to get both meningitis and cephalitis (one is swelling of brain and one of the brain lining).
Eventually after the first year of being in and out of hospital the kidney function was good. Unfortunately, due to the many absences during those GCSE’s, and despite trying to keep up with schooling, my GCSE results were not the best. In fact, the results came out when I was in hospital being treated for CMV, and think my parents would have been much harder on me if had not been in hospital!
The next few years I went to college as a “regular person” and did well throughout these years with just the odd admission here and there with UTI’s etc, but nothing as bad as have had it before.
I decided to take a gap year to save some money before starting Sheffield Hallam University to study media production as I wanted to work in radio.
Towards the end of my second year I was feeling very unwell with high fever, being sick, not keeping food down and ultimately missing classes.
I didn’t want to tell, or let my parents know as they would just worry, but in the end, it was my housemates that rang my parents, and to my surprise when I opened the door there were my parents standing there. The first thing they said is that I looked so yellow I could be a Simpsons character!
I was taken straight to Manchester Royal Infirmary where my creatinine was almost 1000, so was admitted straight away. The next day a shunt was put into my leg for emergency haemodialysis, which was in for approximately a week, getting about 3 sessions of dialysis in that week.
At the end I was told that the damage that had been done to the kidney was irreversible and I would most likely need to start regular dialysis again and that sadly this transplant would eventually also fail.
I returned home, I withdrew from university and had a gap in my life. I had no idea what to do and where to start as I wasn’t qualified in anything really, and only ever had retail jobs. As I was deteriorating, I wasn’t even able to even hold down a part time job.
The symptoms of the failure were becoming more evident to myself although I wouldn’t say or tell anyone (I’m kind of a proud person and unless I’m feeling absolutely awful I don’t tend to complain). However, my joints were really hurting, I was getting cramps more often, my appetite went down to virtually nothing. My mood was so low as I had no idea where my life was going, and I knew what was ahead with dialysis and the wait for transplant. The whole thought just made me want to give up on life. I got really depressed and shut myself out from the world.
After a few months of this my mother basically talked to me and to be fair was correct when telling me that things are not going to get better if just stayed in bed all the time and never left the house. She said I needed to try and do something whether it was to offer to volunteer at something, go for a walk in the local park, or even try to learn to drive, but do something.
So, I did and started to volunteer at a local youth centre when it opened in the area. I was part of the first cohort of volunteers at the youth centre, so I was there pretty much from the start. I was honest and told them about my condition and that eventually I would be having regular dialysis and I was back on the waiting list for a transplant. Although they tried to understand I don’t think they fully appreciated how drastic and life changing this all was and would be in the future.
For the first few years I loved it, but it started to become stagnant, and fortunately around this time the Kidney Patient Association Chair at the time John Sagar (who since has sadly passed away) had emailed me and asked if I wanted to join the committee at my local KPA , to which I said yes and a few months after I was part of the local KPAs committee. I was now part of my KPA and still volunteering at the youth centre.
However, I could feel my body slowing down, my mind would go blank at times and I was feeling really rough, but the function was still stable, but I was basically clinging on. I had my fistula made on my left arm, so it was ready for when I did require to start dialysis.
In December of 2016, I had to start dialysis and I had decided that if I want to control how my life is going to go, I wanted as much control and say about when I did my dialysis. Therefore, I trained at Chorley Hospital to be a home haemodialysis patient. I could then decide when to go on the machine and work it around my life and generally having more flexibility, it was my life and my illness, and I was no longer a child and had to take a grip of this and make it work for me. After 6 weeks of training I started dialysis at home after my bedroom had been adapted so I could do my dialysis in my bedroom and things went well.
It did start to dawn on me that dialysis at home was taking up more of my time – setting up, dialysis and cleaning up, taking about 5/6 hours. I talked to some other renal patients that I knew (who now are some of my best friends) and asked them about their experiences with nocturnal dialysis and how it was for them. Was it difficult? Therefore after a few chats with renal friends and my renal team, I started nocturnal in December 2017. I would now have my days free as well as lower pump speeds which meant less of a strain on my body but a more thorough cleaning of my blood so less restrictions.
After a few months of adapting to nocturnal I found this all to be true and my restrictions were next to nothing. My fistula however had issue and I was admitted a few times for various procedures to save it but after six months use there was no salvaging it and I had to have a neckline.
Through volunteering with the KPA I’ve had opportunities to work in my local community to raise awareness about the lack of BAME donation. I’ve been to conferences about kidneys and dialysis where again I’ve met more renal patients and learnt about their journeys. Also heard about new technologies and things available to make life a bit easier learning new things and meeting new people who all gave me the confidence to actually go on holiday on dialysis. At first I didn’t think that would have been possible and would have been a nightmare to navigate and sort everything out but it is not as hard as it sounds (I recently returned from a week holiday in Crete and at the time, depending on what happened with BREXIT I was hoping to travel much more)
And I’ve also recently become an NHSBT Organ Donation ambassador so whenever there are opportunities to spread the word of organ donation, I try to put myself forward for that too I’ve been on the local media a few times now to get more people to engage in the conversation of organ donation especially in the BAME community as there is a lack of donation from these communities. I feel it’s important for all people to talk about their wishes with their families so when the time does arrive everyone’s wishes are respected whatever that decision may be.
I was fortunate that during the Pandemic this year I did receive my 3rd kidney transplant and am still in the early days/months, but this has now given me the opportunity to once again hopefully go forward and use my advocacy and patient involvement that I have been doing for many years now to some good use.”
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