What’s Life Really Like Post-Transplant?

If you are the parent of a newly diagnosed Liver Kid, or you have a Liver Kid who has recently had a transplant you will have a lot of questions about your child’s future. You want to know whether they will have a normal life, or whether your family will ever get away from hospital life, or whether having a transplant is just switching one problem for another.

My Liver Kid is nearly 9 years post-transplant, so I thought it would be worth sharing our experiences so that you can see that there really is light at the end of the tunnel you find yourself in. Of course, every child’s experience is different, and I’m not a doctor, but I have been where you are now and come out the other side.

I won’t go into the entire pre-transplant story. It’s enough to say: biliary atresia, failed Kasai, transplant at 16 months old. One major difference between then and now though is that there was a real shortage of donors when my Liver Kid was on the waiting list, and many children were a lot sicker before they got a transplant than they are today.

But, to get back to the point of this post, what is it really like having a Post-Transplant child? Well, the short answer is that her life is no different to any other kid her age. She goes to school, she plays with her friends, her bedroom is messy, and she loves her family. Of course, we take good care of her health and we’re pretty focused on hand hygiene. We all have a flu shot each year to help protect her, and we are very careful with sun protection. She sees her Liver Team 4 times a year and has a blood test each time. She has an ultrasound once a year, and 3 years ago she had a routine biopsy as part of her post-transplant protocol.

She has not been admitted to hospital due to a fever for 3 or 4 years, in fact I honestly can’t remember exactly when it happened last. Initially we were worried that she would become terribly sick whenever she came into contact with illness, but that hasn’t happened. When she gets a cold, it’s just a cold and she is no sicker than anyone else in the family. In fact, she has to see our GP less frequently for minor illnesses than our older daughter.

That’s not to say that we are casual about her health, we do take it very seriously. If she is unwell we watch her closely and if in doubt we take her to our GP. But most of the time her transplant is just a normal fact of life and the routines around it like taking meds twice a day are just another thing we do, like supervising homework or planning dinner.  These days she only takes 1 tiny capsule twice a day, nothing like the amount of medication she was on immediately post-transplant.

Because she was so little when she had a transplant, everything about her health routine feels normal for her. She doesn’t like having her bloods done (who does?), but she knows it is just something she has to do. She doesn’t really feel any different to other kids, and she does pretty much everything that other kids do. She has been on school camps, and gone to sleepovers. We go on holidays and hang out with other families. Although we take special care of her, we don’t wrap her up in cotton wool and keep her away from other people.  One day she is going to be old enough to make decisions about her health for herself, and we want her to know that it is OK to do most of the things that other people do.

I remember that before our daughter had her transplant one of the consultant nurses gave me some great advice: ‘Liver transplant is the only treatment for biliary atresia, but the good news is that it’s an excellent treatment.’ In our experience that has definitely been the case.

Click HERE to download the Infographic

More about growing up post-transplant

Transplant recipient Libby Mutimer gave a great presentation at the 2016 Liver Kids Conference and Family Day about growing up post-transplant. See it here

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice whatever stage of liver disease diagnosis and treatment you are up to. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au

Childhood Liver Disease and Transplant in the Social Media Age

So first, a disclaimer: when my liver kid was diagnosed and had a transplant in 2007/2008 social media wasn’t really a thing. And I certainly didn’t have a smart phone in the hospital with me. This means that my experience was quite different to today. Of course we googled ‘biliary atresia’ after our first specialist visit, and saw all of the information about possible outcomes – liver transplant being the most likely. Looking back, I don’t think reading this information helped me. Really, it just added more stress to what was already a traumatic experience.

Today, there are hundreds of Facebook pages following children’s liver transplant journeys. Searching Biliary Atresia alone, brings up 145 pages and 76 groups, as well as fundraising websites telling harrowing stories of illness. This means that there is a lot of information out there for parents who are looking for it. For many, this is reassuring, you can see that other people have had similar experiences and might understand what you are going through. It’s really tough to go through liver disease with your child and it’s natural and helpful to seek information and support from others who have shared the experience.

But there is a definite downside to all of this information and there are 2 main reasons.

Liver Disease is Very Individual

Firstly, as your child’s clinical team will tell you, liver disease progresses at different rates and with different symptoms or side effects in each child. So if you are reading terrible stories from other parents you can get the impression that ALL of those things will happen to your child. You will worry about things that might never occur in your case, adding to the number of things you already have to worry about.

If you read anything that disturbs you, talk to your child’s team and ask all the questions you can. Trust their answers and remember that you can always ask for a second opinion if you are really concerned. Remember that your clinical team have seen hundreds of patients and have decades of experience.

Place Does Matter

The second problem with all of the information that is online is that much of it is irrelevant to the Australian experience. We have universal health care and people receive the same treatment regardless of income or status.

That is not the case in the USA, which is why so many stories out of the US are so bleak. Some children don’t get the medical care they need because of insurance or financial issues. The story of an American child waiting for a transplant is not a good indication of the experience you and your family can expect.

Check Facts for Peace of Mind

So, how do you know which sources are worth looking at online? Australian government websites are trustworthy, as are the websites of reputable Australian, US and UK children’s hospitals. When you are reading online articles, do some fact checking:

1. Can you find the information they present on other sites?
2. Is it written by someone with medical experience?
3. Is the health system they describe similar to Australia?

If you can answer yes to at least a couple of these questions, then the information is likely OK. But if you are reading information that is describing just one person’s experience, or is trying to raise money for an individual, be wary. It doesn’t mean it won’t be useful to you, but you risk being misled by information that won’t apply to your family’s experience.

Information about organ donation rates and the wait on the transplant list is particularly prone to mis-representation but easily checked. You can find up to date information on the DonateLife website.

Liver Kids have also added a Useful Information section to our website to help you find some facts.

(click HERE to download the infographic)

Sharing Your Story

Don’t feel as though you are obliged to share your own story on social media either. You will want to keep your family and close friends up to date with what is happening, but consider making that private.

Very important reasons for social media privacy in the case of transplant are to protect the identity of your child and the timing of transplant when it does happen. While you will want to thank your donor family, you may not be ready for them to contact you directly as a result of finding you through social media.

It can be hard to stay focused on the future when you are in the middle of a liver disease diagnosis and treatment, but the outcomes in Australia are excellent and in later life, your eye-rolling teenager won’t thank you for publicly sharing all of the details of their childhood illness.

Bottom line – this is your journey, don’t feel that you have to share it with anyone unless you want to. And try not to take on the burden of anyone else’s experience either. You are on a hard road, be kind and make it as easy as possible for yourself.

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice if you have a new diagnosis or are waiting for a transplant. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au

Featured Photo Credit: http://www.hastac.org

Childhood Liver Disease and Siblings

One of the things that we worry about as parents of a child with liver disease is how our other children will be affected by having a sibling with a serious and chronic illness. How are they impacted by the diagnosis, long hospital stays and major surgical procedures? We muddle on through and hope we get things right, but it is stressful. This month we have asked a Liver Kid’s sibling to do a guest post and give her perspective.

A Sister’s Story

When I was three my little sister had a liver transplant. She is a happy and healthy girl now but nine years ago it was a different story. When she was born, I was so excited to have a little sister, but then we found out that she had a liver disease. This meant that we had to do lots of travelling between the hospital in Sydney and our home as she had lots of hospital stays

In the end, we spent four months living in the long stay unit below the hospital. I hardly ever went home as most of my family was in Sydney waiting for the transplant to happen. Almost every day I went to the sibling care. I had a lot of fun and the volunteers who worked there were nice, but it wasn’t really the same as spending the day with my family. Everyone who worked around the hospital used to say hello to me and the ladies in the cafeteria called me Shirley Temple (I have really curly hair).

Because of my sister’s transplant we have to do lots of things a bit differently. I get a flu shot every year, which I absolutely hate, so that we can protect her from getting sick.

Every time we pat our rabbit or our cat we have to wash our hands and when we get home from school or have been outside, we always wash our hands. We worry about germs and hygiene a lot more than most people seem to. We go to Sydney twice a year for her checkups, and I always like to go, because I worry about her and want to make sure everything is OK. Plus, I can go shopping while we’re there!

Sometimes I get a bit jealous of the attention my sister gets and the fact that her transplant means she gets out of doing some things in PE at school. Her transplant doesn’t really affect my everyday life though, it’s just normal to us. I think it did make us really close and I do worry about her and want to look after her.

My sister wants me to finish by saying she is an amazing survivor. I do think that, but I would never admit it to her!

More Information

For more information on the impact on families of childhood liver disease, please visit our YouTube Channel to see Dr Michael Bowden’s presentation at our Conference last year.

DOWNLOAD THE INFOGRAPHIC

Share Your Experience

Liver Kids is in the very early stages of planning some work focused on supporting families and siblings in particular, we would love to have your thoughts and feedback on the biggest issues for your family and how you have managed them.

A New School Year

Across Australia, the last week of January means the end of summer holidays and the beginning of a new school year. School age children mourn the loss of freedom, while many parents rejoice at the return to routine and (hopefully) a tidier home!

For those starting their first year in school, or moving from primary to senior school, there is a lot to prepare at this time of year. New uniforms and shoes, backpacks, lunchboxes, drink bottles, pens, pencils, books to be covered and all those nametags to be stuck on!

There are also all the worries kids have about a new school year: What will the teachers be like? Will I make new friends? Will the classes be lots of fun or too hard?

Liver Kids and their parents have all of these same activities and thoughts at the beginning of school, and a few more….

With a post-transplant Liver Kid starting Kindergarten this year, I found myself wondering what the new world of school would mean for us.

We have already experienced day-care and the seemingly endless sniffles and sneezes, as well as pre-school with the rough and tumble of the playground. What differences can we expect this year? And what should we talk to the teachers about to make sure they understand the health needs of our Liver Kid?

Fortunately, being part of the Liver Kids Australia community means that I can ask advice from other parents and learn from their experience.

Top Five Tips for Starting School

1. Be your child’s advocate

When your child starts school it is important for their teacher to understand the situation. Even if your child is very well, there might be things that you need to have modified for them, particularly in PE for example. Arrange to meet the teacher as early as possible in the school year, the week before your child starts is ideal. Keep in contact and speak up if something is happening that you aren’t happy with.

2. Teach your child how to advocate for themselves

This might be the first time your Liver Kid is spending lengthy periods of time away from the family. Make sure they knows it is OK to say if they feel uncomfortable with something. Talk to them about why it is important to keep healthy, and how to do that.

3. Focus on hygiene

Schools are full of germs, no question about it. Ask for hand sanitiser to be used frequently by everyone in your child’s classroom. Ask that your child is not sharing equipment with other students where possible. Tell the school you don’t want your child to share food with other students.

4. Normalise your child’s experience

There will be times when your child realises that they are a little bit different to the other students (blood tests, clinic visits, scars etc). Encourage your child to take a matter of fact approach. Sometimes there might be things they can’t do, and that’s just the way life is.

5. Don’t be afraid

It’s really hard to step away from constant involvement in your Liver Kid’s life. Trust that the school is staffed by professionals who know how to look after kids with a huge range of needs. Remember that this is a really exciting step for your child!

Resources

If you would like some information to help you have a conversation with your child’s teachers, Liver Kids has prepared an information page that you can leave with the school for their reference. You can download it HERE

If you have any questions or concerns about your child starting school or suggestions for other members of the Liver Kids community, don’t hesitate to email us at rachel@liverkids.org.au and we will get back to you as soon as possible.

Good luck to all our Liver Kids for the 2017 academic year.