13 years later....

[jenniwren]

I want to introduce myself to all those on here. I am not a parent of a child with liver disease but an adult who was diagnosed with liver disease as a child.

In September 1999 I started the school year as many 13 year olds would. I enjoyed seeing friends at school, went to swimming training 3 times a week, went to stagecoach, trained for 10 Tors and was a reasonably good student. By November this had all changed. I had become weak, jaundiced and struggled to get out of bed. I don't remember this time very clearly which is probably for the best but my Mum had to lift me into the bath in the mornings to relieve my joints just so that I could get up. My Dad is a GP and his surgery partner was my doctor. After having some tests done I was gathered up at some unusual, out of hours time and taken straight to Derriford Hospital in Plymouth. As I have said, I don't remember much of this time but Mum has told me that the doctors at the hospital couldn't work out what was wrong and did a huge number of tests including bone marrow biopsy. When they were out of ideas, they tried to send me home. Mum was adamant that this was NOT going to happen. Thankfully she is assertive as had I followed the doctors instruction to go home until I deteriorated further, that could have been fatal. Instead I was sent to Bristol to see if they could diagnose something. I think it was at Bristol that I was diagnosed with what was then referred to as Chronic Active Auto Immune Hepatitis, now Auto Immune Hepatitis or AIH. I was moved to a solitary room because of the risk of infection and shortly after transferred to Birmingham Children's Hospital which has a fantastic hepatology department.

Once the diagnosis had been made and the correct medications prescribed, things improved dramatically.

I am now 26. I sat my GCSEs at the same time as my peers and achieved 5 As and 4 Bs. I went on to take A levels, have done a degree in English Literature and a masters in Business and Management. For the last 2 years I have been running my own clothing shop working 6 days a week. I have to look after myself more carefully than my peers and most do not understand the complexities of AIH as I look well 90% of the time. Despite not drinking, I managed an otherwise normal social life at university and was as involved as any other student within the student union.

What has made the difference to me has been the support of my family and closest friends. My parents did their best not to make a big deal of the fact that I was a sick child and tried to let me live as normal a life as they could. I was never told I couldn't do things though some things needed to be approached with more care. Everything at home was kept as normal as possible and I was brought up never to use my liver condition as an excuse for not being able to achieve or do the things I wanted. Although this may not be possible for every child diagnosed with liver condition, it is what has worked for me. I take every opportunity and now weigh up the risks.

I hope that this can encourage some parents and children with liver disease that it is possible to live a full and exciting life!

All the best to everyone

Jenni

[lynnhun]

Thank you very much. As a parent of a young child it is good to hear what can be achieved. Well done

[Grace2012]

Hi Jenni, Thanks for sharing your story its inspirational to hear. You have achieved a great deal and with good support and encouragement you've shown how much can be done.

[Victoria2]

Hi Jenni,

I'm really pleased your type of liver disease meant that medications could have such a positive impact as I would imagine extreme exhaustion such as you suffered ,(and I have suffered), would mean the liver is not in very good shape and would perhaps be heading towards a liver transplant or other surgery (as in my own case). It's also a good warning for parents or the indiviual to insist on attention as rare conditions can be overlooked.

I'm glad you have been well enough to do well at school and work and hope it continues. Best wishes Vickie

[jenniwren in reply to Victoria2]

Hi Vickie,

At the time I was advised that I would probably need a liver transplant in my late teens. I've made it to my late 20s without one and although it is still highly likely that I will need one, no one can tell me when that might be. It all depends on when and haw severe any future flare ups may be. For now, I'm managing with a rather shrivelled liver that is holding up! I hope that you are doing ok.

All the best, Jenni

[Victoria2]

Hi Jenni,

I'm going to write a blog page as my history is long and complex only because I've lived a few more years than you and its a different liver disease needing a more surgery based intervention. I really wish pills would work for me ha ha. Way over having so many surgeries (7) with another planned. At times I too have been told I might need a transplant and I suspect I will someday but no so far. That exhaustion is amazing isn't it, I can remember being in Crawley and having to drag myself downstairs to make lunch for my parents when they got home.( I didn't have to make it , just wanted to.)Our cat was very sick and I used to carry her upstairs to lie down with me in my room as she was worse than me and couldn't make it up the stairs. Can you believe I went skiing in that condition and my poor brother was so worried because I had trouble getting off the bed at the hotel. I was so stubborn I refused not to go, however that stubborness can also be useful in surviving I guess. I hope your liver holds out as long as possible. I know my spleen is swollen and I have problems with neutopenia which doesn't help the cholangitis I get but I can't remember if my liver is swollen actually I think it is. I know some of the bile ducts inside it are starting to narrow.The problem is fi they do this surgery and than later the liver fails and I need yet another surgery, its a lot for someone to go through so many stomach surgeries. I think it would be better to fail now but I know the surgeons wouldn't agree with me. Glad you have your shop and can work thats fantastic. best wishes Vickie

[alfismont]

What an inspiration you are to those who have liver disease (in all forms) and also to us as parents who continue to worry after their children (even in adulthood). It still upsets me now to know my son has liver disease and trying to understand why he has it but to hear stories like yours is very encouraging. Like you my son has kept up with his peers and is enjoying his young adult life and continues to try to live a normal life. Thank you for your story and I wish you a very successful business career and a happy life.

[cherub]

I agree, to hear your stories is truly inspirational ..... The courage and bravery you show just by putting it into words. Our son is 18 now and although doing well I still take nothing for granted. I have always found it hard to step back, but agree how important it is to let him live a normal life. Unlike his brother he has chosen not to go to university but to work full time which he really enjoys, if he's happy I'm happy. It makes my day reading such positive posts, Thankyou.

[juorofino]

Jenni,

What an inspirational story!!! My son is only three and has been diagnosed with AIH type 2 back in august this year. I know we have a very long way to go, but to hear stories like yours makes me fell very positive about the whole future! Thank you!!!

I wish you all the very best with your business and a happy life!!!

xx

[Josh2512]

My son was diagnosed with Crohn's and ASC when he was 3 ( he is now 6). Reading stories likei this give great confidence for what the future holds for him and I hope he can live a normal life. I wish you all the very best for the future!!! Best wishes.