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Ben's PSC story

About me

 

In Novenmber 2011, after having a transplant assessment at St James' Hospital in Leeds, I was put on the liver transplant list. At the time, I was told that I could receive a new liver within about 3 months, as I was a common blood group (A+). It then became very real. The call could have come at any time and we were never allowed to venture more than 2 hours away from Leeds. My place of work was just within this boundary. The 3 months came and went with no call and I frequently saw the liver  transplant team in Leeds. I carried on working until 17th April 2012, when my doctors told me that becuase my symptoms were worsening, it was probably best that I stoppped driving, stopped working and concentrated on resting myself and staying as healthy as I could for surgery. I was devastated. I loved work and it kept me going. But they were right. I was starting to struggle.

 

The University of Liverpool and the staff that I worked with at the Leahurst campus were great. I was sad to leave. Fortunately though, I was able to stay on full pay, which was a massive relief, as I no longer had to stress and worry about our way of life.  But I still couldn't wait until this was all over with. It was horrible having this hanging over your head and not knowing when things were going to happen, even with the thought that after the transplant, it was going to be a chance to start life again, free from this illness and my current worries.

 

The call from the transplant team came out of the blue on the 29th April 2012. It was time to go. Within 2 hours we arrived in Leeds and prepared for the operation. Further details about the transplant can be read on 'The Transplant' page using the tabs above. The transplant happened the next day and it was a successful operation that lasted almost 9 hours. Recovery was slow at first due to having a small, but very resistant infection from the surgery and I was discharged from hospital on the 17th May 2012, to continue my recovery at home. Over the next few weeks I was slowly able to start doing more and more and I started to feel fantastic. I was free of PSC. I no longer felt trapped and ill. I felt so much better and like a new person. Compared to how I used to feel, I felt high. I couldn't honestly remember the last time I felt this good.

 

At the time of writin this, I am now 9 weeks post-transplant. I feel great. I am free of PSC. However, at the moment I still feel a bit uncomfortable from the surgery and I still have IBD, which is slowly starting to get worse again. But compared to how I used to feel, I feel great and so I am very grateful for getting this second chance. My surgeon told me that my old liver was enlarged, lumpy and black. "Better out than in". He had seen worse, but it was up there with the worst of them. He also said that without the transplant, there would have been a 50% chance that I would not be here within 6 months time. And so, I am very thankful to the family of my donor. Without them, I wouldn't be here now. I think about them often, especially when I look down at my scar and think about what is inside of me. Words really can't describe how thankful I am.  

 

 

My symtoms (pre-transplant)

 

IBD-associated

- Stomach cramps.

- Frequent bowel movements, usually 5 times per day (up to 10 times during a flare-up).

- Weight loss during flare-ups.

- Severe muscle cramps, probably associated with the lack of vitamin uptake due to IBD.

 

PSC-associated

- Jaundiced skin and eyes (for some reason, this looked worse on some days compared to others).

- Mild itching.

- Painful liver twinges. More often, it was just a mild pinching sensation. However, the sensations, no matter how bad, were scary.

- Frequent fevers and night sweats.

- Fatigue. Feeling tired very frequently.

- Memory loss / confusion caused by toxins in the blood reaching the brain due to a badly functioning liver. Known as hepatic   encephalopathy. This is why I was not allowed to drive when my condition deteriorated.

- Swollen ankles. Thoroughout the day, fluid would build up in my legs and they would swell - this is known as edema.

- Frequent headaches, like there was a bruise inside my head that was sore to touch.

- Joint pains, especially my knees.

- Mood swings, side effect of prednisolone medication (anit-inflammatory / immunosuppressive).

- Feeling down, especially when I saw myself in the mirror and saw how jaundiced I was. This just reminded me of everything.

Links

ben and sarah PSC Support PSC Support forum Kirk's PSC journal Kids

 

Axel is a soft, little lad that loves to please. He is very gentle, terrified of everything that moves and terrified of things that don't move.

 

Paddy is a very naughty boy. He likes to run as fast as he can, no matter where he is going and has tantrums when he doesn't get his own way. Also know as ASBO Paddy.

 

Ruby is our gorgeous Rhodesian Ridgeback. She is playful, very protective and scared of her own shadow. Can also be confused with a sofa bear.

 

Tink is a crazy little kitty that loves to play fetch and drink out of the taps in the bathroom sink. She also hates closed doors.

 

Daisy is our oldest fuzzy. She likes to carry socks round the house when she thinks no one is looking and has been plotting to kill us since we started adding more fuzzies to the family.

 

Fern is a VERY naughty Beagle and the newest in the family. She likes to eat Sarah's underwear, wee on our bed, run off and shout at the world. She is utterly bonkers, but we love her dearly...sometimes!

 

Sunny is a new breed of rabbit. Cute and cuddley one minute, vicious the next. Ladies and gentlemen, I give you the Warerabbit.

 

This is me and my beautiful wife, Sarah. Going through this journey has been so much easier with her by my side. I really do owe her everything. When this photo was taken, we had everything ahead of us and we have come a long way since.

 

And these are the kids...

 

VLARGE_PSC_logo_colour_all British Liver Trust Become an organ donor

My name is Ben McDermott and I am 32 years old.

 

After obtaining my G.C.S.E's and A-levels I went to the University of Liverpool and obtained a First Class degree in Microbiology. I then went to The Univeristy of Manchester and obtained a Ph.D in Biomolecular Sciences. I am now working as a Postdoctoral Research Associate for the University of Liverpool at the Leahurst campus. I really do enjoy my job.

 

I was diagnosed with Inflammatory Bowel Disease (IBD) in 2001, when I was 18 years old and I was diagnosed with Primary Sclerosing Cholangitis (PSC) in 2004/05 when I was 22. My PSC progressed slowly and as time went on, I looked more and more jaundiced. The need for a liver transplant then came more of a reality as my symptoms worsened and I had to start seeing a team of liver specialists at the Manchester Royal Infirmary hospital, to determine how soon I was likely to need a transplant. The thought of going through a liver a liver transplant did not bother me. However, the thought of how much support I would need from my family did bother me. I didn't want to be a burden to anyone and I wanted to be able to support myself.  The thought of how much and how quickly my life would change when the time came was quite scary, because I very much liked how my life was then. I was also terrified by the thought of losing any of our furry "kids" because we couldn't afford to look after them or have the time to care for them whilst I was off work, recovering from the liver transplant. Sarah frequently assured me that this would not happen. So with that in mind, I tried to get on with life and tried not to worry too much about things, until there was something to be worried about (easier said than done).