Emma, who is one of our Hive Ambassadors, wrote this blog for CLDF describing her journey from the children’s clinic to the adult liver disease services, as well as providing some useful tips for other young people currently going through the transition.

 

I thought it would be good to talk about the transition from the Children’s clinic to the Adult’s clinic in this first blog. I hope that whether you are still a few years from transitioning, preparing to transition or you already have done so this blog will be of some use to you.  In this blog, I will be discussing what it means to transition, how to best prepare  as well as giving you some top tips for making the most your appointments now you will have greater independence over your condition.

So, what is transitioning?

Transitioning is the process of preparing, planning and moving from the Children’s to the Adult’s service at your hospital. Although this is an individualised process dependent on your unique circumstances, the usual age for this to take place is 16. Transitioning encourages you to be independent and take control of your condition, for example, you may start to see the doctor on your own once you feel comfortable enough to. Of course, it can seem quite daunting changing clinic and leaving behind the safety of the doctors and nurses you may have known for years. Having transitioned at Leeds hospital at the age 16, I have been going to the Young Adult/Adult clinic now for seven  years and I like to think I am pretty clued up about the process. I hope by sharing my experience, advice and top tips for transitioning, I will be able to make some of you feel a bit better about the whole  process.

Preparing to transition:

Generally, most clinics are aware of or use the ‘Ready, Steady, Go’ programme. This is a programme that you will be taken through with your healthcare team to ensure that you are well prepared to make the transition from services. This programme will cover things like teaching you more about your condition and medications, ensuring you know your emergency contacts and when to ask for help, understanding how your condition might affect your future and career, making you are aware of support networks and making sure you understand the importance of a healthy lifestyle.

One thing that I wish I did more of when preparing to transition was asking questions. So I’m advising you now to make sure that you are asking enough questions. If you are unsure of what to ask, I have provided a list of some:

1. What is the plan for my transition?
2. What will be different at the adult service?
3. Can I meet the nurses before?
4. Is there anything else I need to know before I move?
5. Are there any other young people I can talk to?

Making the most of your appointment:

I’m sure that you all have your own tips for making the most of your appointments and I would love to hear them if you to. Here I am going to address some of my top tips, especially for once you start seeing the doctors alone.

1. First, and very importantly, ask questions. There is no such thing as a silly question and you can’t ask too many. If you are unsure of something, ask. This is something that I am making a conscious effort to do more of. You are starting to become more in control of your health and it is important that you know as much as possible.
2. Second, make the most of your support system. You will see specialist nurses and often youth workers and CLDF who are all there to support you. Don’t forget that it isn’t all just about looking after your liver, they can support you with things like mental health, careers, education, relationships, travelling and sexual health. Make the most of these people. They are there to help you will all of your concerns, not just the ones about your liver.
3. Third, get a diary that is dedicated to your appointments. If you are only going to the hospital every six months like me or will be soon, make a note of things that you want to discuss between your appointments to stop you from forgetting. You can also take notes in your appointment too of things that you need to remember.

You will be OK:

Trust me, it’s not as daunting as it all might sound. There is a great deal of support at these clinics, such as doctors and specialist nurses as well as often a youth worker and often members of CLDF, all of whom are there to help and support you. Seven years in and I felt that my transition process went very smoothly so I’m here to reassure you that you will get used to the change.

A mum of three from Lisburn will be fulfilling a lifelong ambition next Sunday (May 26) when she does her first sky dive, raising much needed funds for a cause very close to her heart, Children’s Liver Disease Foundation (CLDF).

Amanda Withers’ four year old son Daniel was born with the rare liver disease, Alagilles syndrome, and she and her family have had information and support from the charity ever since he was diagnosed.

“When your child has a rare disease, it’s easy to feel isolated but the CLDF team are always on hand with support, whether it’s over the phone by email or coming to see us when we are at hospital clinic visits,” says Amanda. “They also organise special weekends for families in Northern Ireland whose children have liver disease and we really enjoy these. It’s great to feel part of a family and realise that you’re not alone.

“A sky dive is something I have always wanted to do, so has my sister, Susanne, and my cousin, Ruth. We always said we would do it together but with myself and my sister having three children each, the past few years have never suited with someone always being pregnant! Now the time is right, and it seems the perfect way of raising some money for CLDF as a thank you. We’re delighted to have raised over £1,000 already. As the day gets nearer, we’re all very excited but sure the nerves will kick in on the day!

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. In order to do this however, we rely on voluntary donations, so we’re delighted to hear what Amanda, Susanne and Ruth have planned. We hope they enjoy the experience and the funds raised will continue to make a difference to families throughout the UK affected by childhood liver disease.”

You can support Amanda’s sky dive by going to https://www.gofundme.com/amandasusanne-amp-ruth039s-skydive

We are very grateful to 14 year old Hannah for sharing her brilliant and moving account of being diagnosed with liver disease….

I was sitting in the back seat of my Dad’s car coming home from an 11-day stay at the hospital, feeling like l was floating in mid-air. l couldn’t believe what had happened to me in the last 11 days, l had endured multiple tests, scans and even a biopsy. l felt like l had been watching one of the really sad videos you see on TV when it’s Pudsey night.

I guess it all started back in February 2018. l had been off school for about three days, I had been feeling horribly sick. I have a younger sister Katie who was at school when I was off so when my gran, who was looking after me, said she was going to get Katie I asked if I could come too. Katie had been worried about me because we are very close, I wanted to show her I was fine, sadly my plan didn’t work because, when Katie and my gran got into the car, my gran realised my eyes were yellow.

So when we got home my gran phoned my Mum and then my Mum phoned my Doctor who told her to take me to hospital. My Mum then phoned my Dad and they both came home early to take me into hospital. I don’t remember much about the journey but I do remember driving along the motorway thinking “ls this some sort of sick joke? I feel fine, why do I need to go to hospital?” but in hindsight I’m glad we went because if we hadn’t I could have died. If we had just let it carry on or it would have been worse and harder to treat.

I stayed in hospital for 11 days and had a lot of tests and scans, I wasn’t particularly scared of the tests or scans. The bloods tests hurt, I was always worried about the outcome of the scans or I would move too much or miss an instruction during them, but I got used to it. The one thing that scared me was the biopsy, what if I woke up half way through and saw them doing it. What if something went wrong? What if I had cancer? What if? What if? What if? The day of the biopsy I had to fast. Tthat means I wasn’t allowed to eat, it was torture. The night before the biopsy I had a moment of acceptance, there was nothing I could do, whatever happened was going to happen.

After the biopsy, my stay in hospital was a blur of tests and scans, I don’t remember much but I do remember that it was Valentine’s Day when I was in hospital and l received a teddy and a balloon, I’m pretty sure it was my parents but they wouldn’t admit anything, I felt like a little kid with everyone saying “Aw, was that your boyfriend? How lucky are you!?” and me saying “no, I don’t have a boyfriend I don’t know who got me it.” and probably going red, it was weird, everyone was saying I was brave but I felt like I was a ghost or I was reading a book. Basically l felt like I was dreaming.

The worst part of the whole experience was having to say goodbye to Katie, I felt cruel because I needed my Mum to help me with stuff because I had a cannula in my arm and that meant Katie didn’t get to cuddle up with my Mum in bed at night like she always does.

On Valentine’s Day my Mum and Dad had a fancy dinner at one of the cafes in the hospital and my sister and I went to the medi cinema together and watched “The Cavemen” I got really tired and ended up resting my head on Katie’s shoulder, she got worried and asked if I wanted her to go get a nurse, I told her I was fine just a bit tired but I felt really bad. She was the little sister I was meant to be looking after her not the other way round. After that I tried to sit up more so that I didn’t scare her again, it was really tiring so I slept on the way back to my room and a nurse pushed me in a wheel chair, Katie walked alongside.

When we were told I could go home I was so excited but kind of scared. What if something went wrong? When we told Katie she said “Excuse me for a minute, please,” and went out into the corridor and jumped up and down saying “Yes, yes, yes.” It was adorable and made me feel like my heart was going to burst.

I’m back at school now and I have started S3, I’m actually about to start S4, when I got back I told my friends and they decided to protect me, there was actually one time someone accidently bumped into me in the corridor and one of my friend yelled at them it actually scared me so the person must have been petrified. It took a while for me to get back to school, I was off for a month and went home from school early a few times at the start, but I’m so glad I’m back. Not everyone can say they like school and mean it, but when you spend so long away from it, it feels great and I can say I like coming here because it reminds me how far I have come, I am not a sick girl, I am a girl that has a condition called auto-immune hepatitis, it doesn’t define me, it never will, all I have to do is take my medicines every day and be careful doing sports and stay away from touch sports.

If I could go back and do something different, I would try to be more positive when I was diagnosed and less scared of the biopsy.

If you are a young person like Hannah, remember that we are here for you and can support you in many ways. Contact our Young Person’s Digital & Engagement Officer on 012 212 6007.

A mum from Berwick Hills is organising a fundraising night to support two organisations which have played a big part in her son’s battle with chronic liver and kidney disease. Ten year-old Marley Gill who has portal hypertension, congenital hepatic fibrosis, Caroli disease and polycystic kidney disease, received a liver transplant at Leeds General Infirmary just three weeks ago.  Now his mum Rachel wants to say thank you to Children’s Liver Disease Foundation and James Cook Hospital for the part they have played over the past two years.

“Hospitals and medical tests have been a part of Marley’s life ever since he was five years old,” explains Rachel. “The last two years, however, have been the worst with some 28 hospital admissions including James Cook in Middlesbrough, Leeds General Infirmary and Kings College Hospital in London.  After surgery at Kings at the end of last year, Marley spent nine weeks in hospital fighting off sepsis and a severe liver infection. Shortly afterwards, we received the devastating news that he would need a liver transplant.

“We were fortunate that we only had to wait a couple of months for Marley to receive his transplant and we are so grateful to the family who made such a generous decision at such a difficult time. The operation took around nine hours, but his recovery has been amazing – he’s such a strong, brave and determined kid. We know we have a long road ahead of us and we’re going to take each day at a time but we’re so pleased to have got this far.

“We’re organising a charity reggae night at North Ormesby Working Men’s on Friday May 10^th. We want to raise funds for Children’s Liver Disease Foundation who have been there for us from day one and Ward 21 at James Cook where Marley has spent so much of the last two years. We’ll also be making a donation to the children’s liver unit at Leeds. The support we have had from the local community has been so fantastic that the evening has already sold out but anyone who would like to support it can do so online at by clicking HERE

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented:  “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. In order to do this however, we rely on voluntary donations, so we’re very grateful that Rachel is organising this fundraising evening. We’re delighted that Marley is doing well, we wish his family all the best and look forward to catching up with them soon.”

 

For more information on CLDF visit childliverdisease.org.

Matt Bates from Ockbrook, Derbyshire, will be running his first London Marathon next weekend (April 28). The 42 year-old has not been running for long but is taking on the Marathon to raise funds for a cause very close to his heart, Children’s Liver Disease Foundation (CLDF).

The charity has been an important one to Matt and his family ever since his 11 year-old daughter, Alice, was diagnosed with autoimmune liver disease seven years’ ago.

“It was a life-changing diagnosis as there is no cure for this condition,” explains Matt. “Alice needs daily medication and ongoing support from medical teams, but the information and support we have received from CLDF has been great and made us realise we are not alone.  I completed Ride London a couple of years ago to raise funds for CLDF. So having only just started running, I thought I’d give the Marathon a whirl to try and help raise more money – although it turns out running is much harder than cycling!

“This also came at a time that we received some great news. CLDF are helping to fund a research program specific to Alice’s disease. This motivated me even more to push myself and try and raise more funds to help the great wok continue.

“Training is going pretty well. I’m fortunate to have a few friends who are runners and they are helping to motivate me, especially on those cold early morning runs! Fundraising has also gone well. My colleagues at MacDermid Graphics Solutions have been particularly supportive and I’m delighted to have raised over £2,000 to date.”

Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. In order to do this however, we rely on voluntary donations, so we are delighted that Matt is doing this for us. Running the Marathon is a huge commitment in terms of time and training. We shall be there, cheering him on and hope he really enjoys his first  marathon experience.”

You can support Matt’s London Marathon challenge by clicking HERE 

For more information on CLDF visit childliverdisease.org.