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Carol

Carol talks about her diagnosis and starting a family while living with PSC

I chose not to let it bother me

Growing up I never had any real health issues, until the age of 15 when I was diagnosed with type 1 diabetes and ulcerative colitis. At the time, it was hard to get my head around, but I was determined that it wasn’t going to change my life and I would continue to follow my dreams. I kept to my word, I finished my A-Levels, went to University and moved to Barcelona to continue living my Spanish dream after graduating.

Towards the end of my 6 years of living in Barcelona, I started to feel not quite right – I was tired and struggling to keep up. After several blood tests, I was told I was anaemic and needed to take iron supplements. My liver readings didn’t improve, and I was told to stop drinking for 6 months. In the meantime, I was diagnosed as a coeliac and was told I would need a liver biopsy to diagnose what they believed to be a rare liver condition. I chose to enjoy my final month in Barcelona and deal with it all when I moved back to the UK.

To cut a long story short, I was diagnosed with PSC shortly after moving home when I was 28.

I look back to this time now and realise that I was in complete denial. I chose not to let it bother me. I wanted to make a new life for myself back in Manchester and I didn’t want anything getting in my way. I didn’t do any research, I saw my gastroenterologist every 6 months and as things didn’t deteriorate, I asked no more questions. Even when I had to have my gallbladder removed, I refused to see any link with my liver condition.

I couldn't continue to bury my head in the clouds

Fast forward about 4 years when I had met my husband-to-be and we were in the process of buying a house. I started to look at life insurance and travel insurance and alarm bells started ringing. This PSC I had chosen to ignore, was actually more serious than I realised. I asked my consultant outright; would this kill me? He answered honestly and told me that it may not kill me, but I would live a shorter life. I picked myself up and continued to ignore the truth.

I got married and was pregnant within a few months. My pregnancy was pretty straight forward, and my liver readings were good, better than they ever had been since being diagnosed. Our son was born early due to high blood pressure, but he was perfect and I couldn’t have been happier. But that is when it hit me - Oliver must have been only a few months old and my liver readings were through the roof and I was referred to a liver specialist to investigate further. Also a close friend of mine died from cancer, making me realise how precious life was and then the tennis player, Elena Baltacha, died from cholangiocarcinoma. My world came crashing down around me – I didn’t want to die. I needed to be here for my son and I certainly couldn’t continue to bury my head in the clouds anymore.

Luckily, my liver readings stabilised and a year or so later, after careful consideration and many talks with my consultants, we decided to have another baby. It was now or never. Charlotte was born early (due to an infection in the placenta), but she was just as perfect as her brother and our family was complete. This time my liver didn’t react as badly, and I was back to normal so much quicker.

I count my blessings every day

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Oliver and Charlotte are now 7 and 5 and my husband and I have been married for 8 years. I am still doing well. I struggle at times both physically and mentally, but I try to listen to my body now. I am fit and healthy and I hope and pray this continues. Would I have done anything differently? I guess not. If I had been aware of how serious PSC was, then maybe I wouldn’t have had a family. But I am so glad I did. I was told by one medic that I was definitely at the back of the queue when it came to handing out good health, but I feel it’s made me appreciate my life more. None of us know what is around the corner. The key is living life to the full and enjoying it. I am one of the lucky ones though and I count my blessings every day. 

I wanted to share my PSC story with you all as I believe reading positive stories helps you deal with this illness and gives you some hope if you are new to it all. I have taken a lot from PSC Support and I am so grateful for all the advice I have received. 

My advice is to stay as positive as you can, enjoy your good days to the maximum, but know to listen to your body and slow down when you need to. Life is for living. Let’s make the most of the cards we have been dealt.

Lots of people living with PSC go on to have families of their own. Professor Michael Heneghan, talked about PSC and pregnancy at our 2019 London information day.

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