Nick’s story

Hi my name is Nick Unitt and this is the story of the incredible fight for survival that I have been through.

I was born in a council house in 1961, pretty unremarkable but as I grew older I had a big belly and skinny arms and kept wetting the bed. Mum concerned took me to the doctors and I got referred to the local hospital, the consultant said I just need to exercise more and the bed wetting was just laziness which I would outgrow.

At 12 I got a kidney infection which was so painful and doc diagnosed me with polycystic kidneys which was confirmed at hospital. They told me many people have these and are only revealed after death during an autopsy.

So I struggle on eventually buying my own business age 35. I am now seeing a kidney specialist at the local hospital and 2 years on from buying the shop I wake up in the middle of the night thinking I'm coming down with flu only to be sick in the sink and discovered when I turned on the light it was about 4 pints of blood.  I got my Mrs to call the overnight doctor (not 999 for God’s sake - bad decision) and the doctor called the ambulance. After a lot of tests the hospital said I appeared to be suffering from acute liver failure and kept asking me if I drank alcohol but I was teetotal and I don't think they believed me. So they rushed me up to Kings in London by blue light. It was and still is considered the best liver treatment centre in Europe.

Now the hell really started.

I was seen by the foremost expert on liver disease Professor Williams, head of the liver department, who told me he knew that I was suffering from Congenital Hepatic Fibrosis which was polycystic kidneys and in my case a fibrous liver. This was caused by a faulty gene carried by both my parents which I become the unlucky recipient - my older brother was Mr Healthy. Later it was found out that most kids born with this do not make it past 18 months as the enlarged liver restricts their lung function. Now it's known as ARPKD (Auto Recessive Polycystic Kidney Disease) which features cystic kidneys and a cystic, or in my case fibrous, liver. There is a similar condition ADPKD which is the dominant form and features very large cystic kidneys but having the super rare recessive condition my kidneys were very small and deformed. I cannot express how terrified I was mixed with the emotion of having come from nothing to owning a shop taking £12k a week and about to lose it all.

There was no charity or help group, there were no other patients with my disease to talk to or find some comfort from, the consultant at the time had only heard of three other surviving victims and they were all younger than me. I was on my own.

So the advice at the time was ‘sell the shop organise your affairs there is nothing we can do for you, yes we do transplants but they are few and far between and you would be lucky to get one’. They controlled the bleeding from my oesophagus with a blood pressure med called propanalol which has awful side effects and as the pressure was only portal it was making the pressure in the rest of my body too low so I gave up on them and attended to the veins with regular banding to stop them bleeding.

I then suffered with kidney failure and had to be dialysed 3 times a week which was a living hell. I had to have an operation on my arm to make a fistula - not very pleasant - this went on for 3 years until the transplant.  So I lost my Mrs, House, Shop and ended up in the worst council flat you could imagine, so the 2 years that I expected to live turned into 17 long years. I never slept for more than 2 hours a time for 5 years as I was so scared I was going to bleed in my sleep so eventually after moaning to have this transplant for years I wrote a letter to PAL's explaining the amount of money me waiting has cost the country and within a week I get the most important and waited for phone call in my life.

It was 2am and I answered and it was a transplant coordinator saying they have a liver and kidney from a donor.  Great I thought but could you ring me back because I think I'm dreaming, which she duly did and said have a shower and something to eat and I will send an ambulance. I got on the phone to my best friend who lives 100 yards up the road and she came straight down to organise the day to day running of my life, cancel the milk etc. by 6am I was in the ward having various tests done and having the whole procedure explained to me so I could sign the consent forms for the operation. About an hour before I was due to go down I had a nurse ask me if I would give permission to take a part of my new liver, a lobe to give to a small child in desperate need so I agreed to that I mean how could you turn a kid down.

This was August 2012 and the operation didn't go to plan (oh what a surprise) as soon as the double transplant was done the surgeon knew it was no good. It had been out of the body too long and was not a high enough quality to have a lobe removed so it failed and I was gravely ill. In 5 days they found another liver and I had my third transplant, this one was ok but as we found out had two incurable viruses CMV and VRE. All this time I was unconscious and fighting for my life. During the second liver op my intestines were punctured which led to an ileostomy (bag for faeces) and I ripped the feeding tube from my nose and the tube down my throat supplying me with oxygen. So they did a tracheotomy to help me breathe. After about 4 weeks or so they gradually woke me up only for me to think that Lennox Lewis (boxing champ) had stabbed me, yes I was suffering from hallucinations which to this day seem like real life. The staff had put boxing gloves on me and tied me down to stop me pulling the tubes out hence Lennox Lewis.

I felt terrible, I couldn't breathe without a machine, my lungs kept filling with fluid which had to be sucked out to stop me drowning and they were nearly too late on two occasions and I could not move. I was so weak I could not lift my hand from the bed. Eventually they weaned me of the oxygen and I got moved out of ICU and into a general liver ward.  They explained they would be able to reverse the ileostomy which was a huge relief and that they would get me back later to stitch up my incisional hernia as I only have a skin closure because of the amount of times they operated on the same place. I have a huge scar that resembles a 3 pointed star on a Mercedes bonnet, at the top the scar started to swell up and 5 days of this and my temperature went up above 40c so I got rushed back in to ICU and my scar split open after I heaved, feeling sick. There was pus everywhere but at least it got cleaned out and re stitched. I am still waiting to get my belly stitched up but a year after I got a blocked bile duct which I have been waiting to get sorted out before they stitch up my belly.

Also I got cataracts in both eyes as a result of the steroids I had to take to stop liver rejecting which have now been sorted. So the bottom line is where am I now in relation to my treatment and life? Well 2 years 6 months down the line the belly is still there and causing me a lot of pain, my weight has gone up through taking steroids I can't stand tea and now just drink coffee. All the way up to a year or more I have never felt this good and that's all my life, obviously the liver and kidney failure had a massive impact on me; I was never heavier than 10 stone all my life now I'm 13 1/2 stone and need to diet. I never realised how ill I was until I had this operation. If the same thing happened again I would have not chosen a different path, in fact when asked if I would go through it again I said in a heartbeat for even an hour to feel normal again, this is not really a cure, it's more like being reborn into another life where you obviously have to look after yourself and take the meds but in my case I had much clearer thought. Although I lost everything financially I gained in the people I have met and become friends with. Thanks have to go to my surgeon Mr Wayel Jassem and all the doctors and nurses and magnificent transplant coordinators who have kept me alive especially the two families who donated the organs of their nearest and dearest, who took a far braver decision than I ever had to make.

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