Another day, another hospital
I am getting considerably fed up of hospitals and doctors now. Today had an appointment for the youngest so at least it wasn't me getting prodded but no mother wants to see her children suffer - no real mother should that say.
Sometimes lately it feels as though its a case of 'well its Tuesday so this must be PRH' and we worked out that I now have 10 separate doctors working on my case (various health problems) and the different departments appear to communicate very poorly so I often end up answering the same questions or having the same tests for different specialists.
My energy today has been totally drained so I doubt I will be on here for long; I am really struggling to keep my eyes open at the moment.
You may have noticed from my post yesterday that I have cirrhosis of the liver but it has nothing to do with alcohol. Unfortunately, liver problems don't get discussed in the media so many people still think of it as some form of just punishment for a self-inflicted illness. This is the third highest killer in the UK after cancer and heart disease and yet it is hardly mentioned.
The second most common cause of cirrhosis of the liver is 'Non Alcoholic Fatty Liver Disease' - this does not necessarily mean that the sufferer is obese (although that is sometimes the cause), you can develop fat on your organs if you lose a lot of weight quickly or if you spend any time with malnutrition or poor appetite.
Most people have heard of the various forms of hepatitis such as A, C, D - although 'hepatitis' is the name for liver problems anyway, but this is not normally known. I know people who have been diagnosed with one or the other of these and they have received some horrific comments as people always assume they are drug addicts and that they somehow deserve to suffer. This is so far from the truth that it is laughable.
Paracetamol overdose can also cause the problem - did you know that taking one paracetamol above the daily recommended dose can lead to liver failure in the future? I get so angry when I see how cheaply the drug is in supermarkets and other non-medical sources. According to the Government, this is because it is not a dangerous drug - it really is amazing how ignorant and stupid they are over some things.
Another cause is what I have, it is called Auto-Immune Hepatitus (AIH for short) and it does what it says on the tin - my immune system has caused the problem, well my lack of functioning immune system has. It does make me ill at times and I often have to be admitted for a few days while my bloods are 'balanced' and I rest. The fatigue is a killer - no pun intended and can leave me completely floored for days at a time.
I have to listen to people blaming me for the condition as an alcoholic. Ironically, I am not a drinker and never have been as I never could see why people pay so much for a drink that makes you feel odd and it seems leaves you with a specialised set of side-effects, mostly the next morning. It's just my luck to have the morning after without the night before lol
My condition is called a life-limiting condition in that at some point it will kill me - the estimate at the moment is 5 years if I'm lucky (a lot longer if I am lucky enough to build up my strength enough to tolerate a transplant).
The reason I am sharing this today is that in the UK there is a 'love your liver' event in the Houses of Parliament on Wednesday, 28th January in order to raise awareness among our politicians and the British Liver Trust is asking that people contact their MPs to ask them to attend or at least to search out some information after the event. The campaign will go nationwide, where people can attend and learn how to look after their livers, what signs to look for and to give some understanding of the problems people like me face.
I would urge you all to search out information on what you can do to keep your liver healthy and to be sure that those around you are in possession of the facts as well. Please help abolish the ridiculous public perception of conditions affecting the liver. I would not wish this on my worst enemy - pain, fatigue, jaundice at various times and constant blood tests. I would hate it if any of you contracted this purely because nobody asked you to look into the condition and its various causes.
Unfortunately, despite being the third largest killer in the UK - sorry I don't have the figures available for the US and other countries - the grants for research are minimal and it is not as fashionable to support organisations like the British Liver Trust who research for the best way to treat the condition and hopefully one day find a cure.
I want no sympathy from anyone, as I said, my reason for being open about this is to spread the word and contain the disease.
If you have any questions I will try to answer them from the information I have been given by BLT and the free distance learning that they run to spread the word.
Image Credit » picture is my own and all rights are reserved