How I helped EastEnders - blog by liver patient Monira Khanom

Friday, 23 Dec 2016

The hardest part of my liver failing was telling my children.

I was close to losing my battle for my life. The doctors told me I was being placed on the super urgent list and my children should visit me in hospital.

I am a mum of two and I felt broken inside

Monira KhanomI managed to keep it together and not cry but I remember my daughter’s face and it had so many worries and questions all over it.

Organ donation saved my life - and that’s why I was happy to try and help EastEnders portray liver disease and organ donation responsibly.

My liver failure had an unknown cause. I fell ill in mid-January 2015. I had lost my appetite and was suffering nausea and vomiting.

Blood tests showed I had a high liver function, and at first the symptoms were thought to be a virus, then gastritis. I was also suffering from very scary anxiety attacks, which I’d never had before.

By March, I had turned yellow and I was too weak to look after my children. I was referred to specialist liver unit at Queen Elizabeth Hospital in Birmingham.

I can't describe how I felt in the taxi on the way there.  I was going 45 miles away from home and through that journey I kept looking at the surroundings around me in Shropshire and wondering if I would ever return. I couldn't even say goodbye to my children that day.

In hospital I started suddenly going downhill very fast. It was very scary.  On the first morning I collapsed and was taken to intensive care.

Within a week I had developed diabetes and disease had begun to affect my brain function through encephalopathy, making me confused and my behaviour erratic.

After only a week and a half, I was told I would be put on the super urgent list for a liver transplant.  That meant I only had days to live. I remember crying because I was so confused and I couldn't remember what to ask.  The only question I asked is about my life span.

I remember crying for my children a lot.

Being away from my children was so hard but they were in the best possible care with my husband's sister.  My family looked after me while my husband's family looked after my children.

Our families gave us so much support. 

Thankfully, I received a transplant just in time through a deceased donor. I don’t know who the donor was but I'll never be able to thank my donor and their family enough in words. I didn’t know anything about organ donation and transplantation before this. Now I try to promote it whenever I can. I started a blog where I talk about life after transplant and try to motivate people to join the NHS Organ Donor Register.

And I recently helped NHS Blood and Transplant by speaking to the EastEnders research team regarding their storyline about Phil Mitchell’s liver failure. The researchers wanted to know about the symptoms and how it felt emotionally to go through such a scary time.

I particularly told the BBC about encephalopathy and how that affects you.  You become very confused and I remember being very scared especially when I had visitors. I remember the nurses would come and ask me my name, where I lived, where I was.  As days went, I couldn't answer all the questions which was another sign that I was slipping away. 

Liver disease is very debilitating and there are people that have been on the transplant list for years. While a lot of people link liver disease with people drinking too much, most patients who need liver transplants need them because of other illnesses and diseases.

Sadly, due to the shortage of donors, some people have no choice but to live with such a horrible condition as liver failure - and some people die before they get the transplant they need.

I hope the EastEnders storyline will highlight the difficulties of living with liver disease and make people think and talk about organ donation and that more people will join the NHS Organ Donor Register

Monira blogs at www.transplantmum.blogspot.com