A) I would suggest that if you are able to, that you ask one of the members of your hospital team to have a look at your scar to make sure that it has healed properly and that there are no reasons why your scar might look less aesthetically pleasing than it should.
The scar following transplantation is usually very neat and although red initially will usually fade to a silvery colour on pale skin but may appear darker on darker skin. Children and young people who have a transplant today will usually have just one incision across their abdomen but some young people whose transplants were performed many years ago have what is called a Mercedes incision with a vertical scar line joining the centre of the horizontal scar across their abdomen. There is nothing as such that you can do to get rid of a scar but I know of some young people where it was felt that surgical revision of the scar could make it look better aesthetically. There are also some very effective camouflage creams available which can be used to cover-up scars.
It is possible to get a referral from your GP or consultant to the Red Cross skin camouflage volunteers. The volunteers are fully trained and are able to teach you how to effectively apply the camouflage creams yourself. The camouflage creams are available on prescription. Look at www.redcross.org.uk/skincamouflage for further details and to find the details of your local Red Cross branch.
A) Itching, often called pruritis by doctors, can be a very distressing symptom of a number of conditions, but is well documented in cholestatic liver diseases; these are liver diseases where there is either reduced bile formation, bile flow or biliary obstruction. For further information about cholestatic liver diseases see the CLiC: Cholestatic Liver Disease Consortium website at http://rarediseasesnetwork.epi.usf.edu/clic/index.htm
Firstly, it is important to know whether your itch is a new symptom or something that has been on-going for a long time and that your hospital team are already aware of. If your itch is new, what we would call acute pruritis, it could signify that there has been a sudden change in your medical condition, so you should report it immediately to your liver team.
I wonder whether you have discussed the severity of your itch with your hospital team and whether you have tried any medications to help lessen the itch and hopefully improve your quality of life. There are many types of medication, which act in different ways, which may be successful in improving your itch. CLDF have a good leaflet on pruritis which gives further details on the different types of medications available, these include Ursodeoxycholic acid, Cholestyramine and antihistamines. Some people have also suggested that acupuncture can help with pruritis. It is also important to check that there are no other causes apart from your liver disease that are adding to your itch. For instance, do you have any skin problems such as eczema? It is important to have good skin care to minimise any other form of itch. This includes avoiding the use of soaps and detergents that irritate your skin and ensuring that your skin remains moisturised by using emollient type creams which can be prescribed by your GP or hospital team should you require them. Clothing made of cotton is less likely to be an irritant to dry skin than clothing made of man-made fibres.
In certain circumstances a liver transplant may be considered if your itch is so bad that you are deemed to have a very poor quality of life but it is unlikely to be the only symptom or medical problem that the decision will be based upon. It is true that following a liver transplant most people who suffered from pruritis pre-transplant will find that it has resolved post-transplant but this again does depend on your original diagnosis. I would strongly recommend that you discuss your itch with your hospital team as soon as possible, as it is obviously having a hugely detrimental effect on your life at the moment. You may find it useful to keep a diary for a period of time, in which you log when you feel itchy and maybe you could give it a score from 0 = no itch to 10 = unbearable itch.
This will give you something concrete to take to your next appointment or send into your team, so that they can get a real idea of how badly your life is being affected and hopefully work with you to come up with some solutions.
A) As you are probably already aware, alcohol can cause liver damage to anyone whether they have an underlying liver disease or not. If you have a liver disease then you already have some degree of liver damage which means that your liver has less reserve to cope with processing any alcohol that you consume. In an ideal world, anyone with a liver disease wouldnt consume alcohol because of the difficulty that their already damaged liver would have in trying to get rid of it from their body and because of the cumulative detrimental effect that it could have in causing further liver damage.
We know that the worst kind of consumption of alcohol in terms of its negative effect on your physical and emotional health is the type that is often called binge drinking. Binge drinking is difficult to define but it could be used to describe any form of drinking alcohol that exceeds the Department of Health guidelines of no more than 3-4 units per day for a man or 2-3 units per day for a woman.
http://units.nhs.uk/howMany.html If you check out this NHS website it has lots of useful information about alcohol and an alcohol units calculator so that you can see exactly how many units are contained within certain drinks.
It demonstrates just how easily you can consume more than is considered safe, even with a previously healthy liver. For example, one pint of certain stronger strength lagers would equal the daily male alcohol allowance.
I would strongly recommend that you discuss alcohol consumption with your hospital team as they can tailor their advice to your exact situation, taking into account your current liver condition but my overall message has to be that it would be best to avoid consuming alcohol if you are able to.
To order your copy of CLDFs Taking your Liver into Adulthood, Alcohol leaflet call/text CLDFs young persons officer on 0121 212 6009 or email ypsupport@childliverdisease.org or download from www.cldf-focus.org
A) Having hepatitis B in itself should not stop you from having a tattoo but before you consider getting one performed I would advise you to discuss your plans with your hospital team as you should ensure, as all people with a liver disease should ensure, that your blood clotting and platelet count are normal beforehand. This can be checked on your routine blood tests at either a GP or hospital appointment.
Its very rare for a young person to have had a liver transplant for hepatitis B, but if you have had a liver transplant then this also needs to be taken into consideration because of the risk of infection when on immunosuppression. Again if you are receiving treatment for your hepatitis B, depending on the medication used, this may also cause you to be at more risk of developing infections.
As Im sure you are already aware, hepatitis B along with other blood borne viruses such as hepatitis C and HIV can be passed on when a tattoo is performed. It is therefore vitally important that you ensure that the tattooist and the tattoo studio are registered with the local authority under the Local Government (Miscellaneous Provisions) Act 1982 which means that the local authority has approved the tattooist and their premises as working in a way that meets Health and Safety requirements. This should ensure that you are not infected with any other viruses and that your hepatitis B virus is not passed on to anyone else that uses the same tattoo studio.
You should also remember that legally you must be 18 years of age to have a tattoo, although the responsibility of ensuring youre old enough is with the tattooist and not you. The following web link can give you further information about questions to ask yourself before having a tattoo and other considerations when choosing a tattoo studio.
http://www.connexions-direct.com/index.cfm?pid=105&catalogueContentID=309 To order your copy of CLDFs Taking your Liver into Adulthood, Tattoos and Piercings leaflet call/text CLDFs young persons officer on 0121 212 6009 or email ypsupport@childliverdisease.org or download from www.cldf-focus.org
A) I think that the important thing to consider here is whether your weight is in balance with your height and age. Could you ask one of your hospital team to plot your weight and height against your age for you? They can then tell you whether you appear to be underweight or not.
Some young people with chronic liver disease can experience difficulties with gaining weight which is usually associated with malabsorption. I also wonder whether you have reached puberty yet or not as this will also effect your growth.
I would suggest that you try and discuss your concerns with your medical and dietetic team at your next appointment.
A) You can see your local GP to see what contraceptive pill they would recommend that you take and then check with your hospital team that it is ok before you start to take it or you can ask your hospital team directly.
It is also possible to be referred to a sexual health consultant and certainly at Kings the sexual health team are part of the Transition team. The decision about the most appropriate contraceptive pill for you will be based around your current liver condition and liver function and the medications that you are currently taking. Most young people are advised to use the progesterone only contraceptive pill as the oestrogen in the other combined forms of contraceptive pill can cause liver problems even in people with no previous liver disease.
Remember that whatever oral contraceptive you are prescribed it will only protect you against an unplanned pregnancy and that you should still ensure that your partner wears a condom to protect you both from sexually transmitted infections.
A) There are many reports of women with biliary atresia both becoming pregnant and giving birth to healthy babies. If you are considering trying to become pregnant I would strongly advise that you discuss your plans with your hospital team as they can give you individualised advice depending on your current medical condition.
They may suggest that you should consider having an endoscopy so that they can assess whether you have any portal hypertension and if you do, to what degree, as portal hypertension is one of the symptoms of chronic liver disease that can effect your babys and your health during pregnancy and delivery. They can also advise you about the medication you are taking and whether it is safe to take during pregnancy. Never stop any medications that you are on without discussing it first with your hospital team.
Should you unexpectedly find yourself pregnant in an unplanned circumstance, please contact your hospital team immediately who can advise you and organise an appointment for you to be reviewed as necessary.
A) It is known that some young people with chronic illnesses can have delayed puberty and this is true for some young people with chronic liver disease. Most young people begin to notice changes to their bodies associated with puberty between the ages of 10 and 14 years of age.
The first changes that boys usually notice are testicular and penis enlargement, the growth of pubic hair and their bodies becoming more muscular. These signs are followed by the growth of facial hair and your larynx growing larger, which can be seen as an Adams apple which results in your voice becoming deeper, this is sometimes referred to as your voice breaking.
At 14 you are only just on this upper age limit to start puberty for most young people and boys to tend to start puberty later than girls. Puberty may well be just around the corner for you! If you can, discuss your concerns with your family did your father or brother start puberty a bit later than the average? Sometimes, puberty can be slightly delayed in families, known as constitutional delay, but it will come.
You are obviously concerned so I think it would be a good idea for you to try and discuss your anxieties with your hospital team as well, they may be able to reassure you that you are beginning puberty or look into the possibility of delayed puberty for you.
To order your copy of CLDFs Taking your Liver into Adulthood, Sexual Health: Puberty leaflet call/text CLDFs young persons officer on 0121 212 6009 or email ypsupport@childliverdisease.org or download from www.cldf-focus.org
A) The good news is that there are a number of different types of successful treatment for acne. These include topical treatments treatments such as creams and lotions that you can apply to the affected areas and oral preparations that you swallow such as tablets and capsules. As far as medications for acne go, some are more appropriate for the different types of acne and the severity of the condition and they also need to be prescribed to be compatible with any other medications that you are taking and also to avoid any further liver damage.
As a general rule, we would advise against the prescription of Isotretinoin and Tetracyclines which are sometimes prescribed for severe acne that hasnt responded to other long-term treatments because we know that they can cause serious liver damage and drug induced hepatitis, even in patients without a pre-existing liver disease. We would usually suggest that you see your local GP or dermatologist (a specialist skin doctor) to ask their advice on the best treatment for your acne and then ask them or you to discuss the suggestions with us and we can then advise you accordingly about whether we think that the treatment suggested is suitable for your personal liver condition and medical history.
A) Its true that corticosteroids have the potential to cause hirsutism, it is more common when you are receiving a higher dose hirsutism is where girls and women develop body hair in areas that they usually wouldnt, such as on their face, back, chest and/or stomach, in what is more of a male pattern of hair growth.
I think that it would be beneficial for you to discuss your concerns with someone from your hospital team such as your specialist nurse or doctor as they can review the exact medication/s and dose/s that you are on and ensure that you are on the best treatment or combinations of treatments with dose/s that are right for you at this time whilst trying to minimise any side effects that you are experiencing.
The discussion of your concerns with the team will also enable them to ensure that the increase in body hair that you are experiencing is actually due to your medications and not any other cause, as there are other possible causes of hirsutism, such as polycystic ovary syndrome and insulin resistance.
Once you have been helped to diagnose the definite cause of your increased body hair, you may find that any treatment for the condition or review of your current medications can improve the situation but if the increased body hair continues and continues to upset you, you may wish to consider either camouflaging or removing the hairs. The hairs can be camouflaged on pale skins through using a special facial or body cream that contains bleach which will make the hairs fairer in colour and less obvious to see. Hairs can also be removed through using special facial or body hair-removing creams or by waxing, plucking, shaving, electrolysis or laser removal. Your GP or hospital team should be able to advise you further on hair removal methods and if you are considering some of the more permanent methods of removal such as electrolysis or laser removal they should refer you to a dermatologist for specialist advice.
A) A good diet is essential for everyone but especially anyone with a chronic condition. Im not clear from your question whether you think that a good diet will cure your hepatitis B, so I should point out that it wont, but good nutrition will help your body be in the best state to function with the virus.
We know that if you are overweight your liver can become fatty and damaged and therefore avoiding this, through a good diet and taking exercise will be beneficial. You might find it helpful to ask to see the dietician at your next hospital appointment to get more tailored advice specifically for you, but generally you should have a balanced diet, which is explained well at the following web link and avoid alcohol.
A) Fasting during Ramadan is obviously a very important part of the Muslim faith but my understanding is that there are agreed exemptions from fasting. Professor Akhtar who is chairman of the Department of Pharmaceutics at Kuwait University has written that
Ramadan fasting is obligatory for the healthy adult but, when fasting might significantly affect the health of the fasting individual or when one is genuinely sick, Islam exempts him or her from fasting. "God intends every facility for you, he does not want to put you into difficulties" (Koran 2:185). From an Islamic point of view, this exemption represents more than a simple permission not to fast. The Prophet said: "God likes his permission to be fulfilled, as he likes his will to be executed." Another saying suggests that "a gift that God gives you, you have to accept". In the light of these sayings, many believe that any Muslim who is sick, or whose sickness would adversely affect his well-being during the fasting period, should either not fast or at least break his fast accordingly. An additional argument often used is that if the fasting by a sick Muslim would jeopardise his health further, then this ultimately will neither benefit himself nor his role in society (Ummah) and he should be discouraged from observing the fast...
This quote was taken from http://qa.sunnipath.com/issue_view.asp?HD=1&ID=295&CATE=6
Once again I think that you need to discuss your individual circumstances with your hospital team and specialist pharmacist. Obviously if you are taking any medicines that need to be taken with food then it would not be safe to take them without, but it may be possible for you to change the times that you would normally take your medication to fit around your fast but this will depend on the types of medication that you are taking.