Your Questions About Living With Liver Disease

If you have questions about living with a child with a paediatric liver disease, this is the place to ask. The Liver Kids team will answer the questions you have about the day to day practicalities of managing childhood liver disease both pre-transplant and post transplant. We can't answer medical questions - those are for your child's doctors to answer. If you have a question, email us at questions@liverkids.org.au. We'll reply to you in person, and also post answers on this page (removing any information that might identify you). Of course, this information is general, you need to decide whether it suits you and your specific circumstances. Please consult with your child's medical team where necessary.

How do you manage animals when you have a post transplant child?

Different families will have different approaches when it comes to animals in their post transplant life. The simple answer is to be really careful with hygiene and teach your child to wash their hands whenever they come into contact with an animal. In our experience, you will probably need to change how you look after your pets. Post transplant we stopped having a cat litter tray in the laundry and our cats spent much more time outside than they had before. They now sleep in the garage instead of the house and have restricted access when they are inside. Keeping bedrooms closed to animals is one way of improving hygiene.

You may want to ask family or friends to keep pets outside or in another room when you visit. Make sure that you have hand sanitiser with you, so that you can wash your child's hands immediately when they come into contact with animals. In our experience people are happy to help with this when you explain the reason to them.

And finally, doctors will tell you that a post liver transplant child should avoid any contact with birds, as the risk of disease transmission is high.

What can you do about avoiding coming into contact with sick people?

Firstly, it is almost impossible to avoid your child coming into contact with someone who is unwell. There are some things you can control though. Make it clear to friends or family that you don't want to see them if they are unwell. If you are clear about the reasons why, you will find that people respect your wishes. If you arrive at an event and discover that someone is unwell, don't be afraid to leave, explaining why you need to.

Focus on good hand hygiene by washing hands frequently when you are away from home, especially before eating. When you are at home you can ask people to use hand sanitiser when they enter the house. Teach your child to avoid touching her face (eyes, nose, mouth) if her hands aren't clean. It's important to teach this early, as once your child goes to school he will need to manage hand washing for himself much more than when you are around.

Like all post-transplant families, we were very anxious about our Liver Kid coming into contact with other people's illnesses. As the years have passed, we have found that focusing on hand hygiene is really effective. We have also found that mild, common illnesses (like a common cold for example) don't affect her any more seriously than other people.

What do you do about travel insurance for overseas travel?

It is true that any child who has had a liver transplant will be difficult to insure for overseas travel. Most insurers will not cover a person with a pre-exisiting travel condition. Transplant Australia has an arrangement with an insurer who will consider insuring a child post transplant. This link gives you more information: http://transplant.org.au/members/travel-insurance/. We have used this and found it easy to have our Liver Kid insured through them for a visit to New Zealand. Because of the health system in the US it is much more difficult and expensive to get insurance for travel there. There's no easy solution to this, we certainly wouldn't travel without insurance. We have found ourselves doing a lot more travel within Australia than we otherwise might have.

What do you do about meds when you are travelling?

If you are travelling, either domestically or overseas, make sure that you have packed enough meds to last you for the whole trip. We always take double what we need, and carry them seperately. This way if a bag gets lost, we still have enough to cover us. When you are flying you should take the meds in their original packaging with the pharmacy label with your child's name. This is especially important if you are travelling overseas. It may be useful to have a letter from your child's doctor that lists the medications. We have never been asked for this, but check with your airline and the destination country.