By in Health & Fitness

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.

Thanks


Image Credit » picture is my own and all rights are reserved

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Comments

CoralLevang wrote on January 22, 2015, 3:49 PM

mrsmerlin Speaking up to raise awareness is the best we can do sometimes. Hugs. I "get it." I have stage IV Carcinoid Cancer (Neuroendocrine Tumors), and have about 40% tumor burden to my liver, and have had fatty liver disease to make resection of some of the lesions life-threatening. This cancer will kill me, if the bus with my name on it doesn't get me first. So, I become a mouthpiece and try to bring it up everywhere. I don't "look" ill, so no one would guess.
So, dear woman...Keep it up. Keep living. Each day, we live. Thank you for sharing part of your journey. We are all in the same war of LIFE. Our battles are just different. HUGS!

melody23 wrote on January 22, 2015, 4:05 PM

Aren't stereotypes a horrible thing? i hate that people are thought of as 'oh they must be an alcoholic or a drug user' just because they have a condition that one of these things may cause. people need to realise that there are other reasons people have these things, most of which are not the person's fault. I think its wonderful that you are raising awareness and i will look up the info and gladly write to my MP.

I totally agree with you that paracetamol should not be as readily available, sure they are supposed to limit sales to 32 tablets at a time but believe me that is more than enough to overdose to the point where you need at least an overnight in hospital and that's not even thinking about long term liver damage. That is also supposing that retailers stick to this limit, i was in one of the pound shops recently, cant remember which one but one of the big chains and they had packets of 16 paracetamol on a 3 for a pound offer along with some other products like ibuprofen. i assumed that you would only be able to buy two paracetamol and for talks sake an ibuprofen would be your third item, curiosity got the better of me and i decided to try and buy three packs of paracetamol which they sold to me no questions asked. Considering i know for a fact that they have the types of tills where if you try to buy an age restricted item a box comes up on their screen asking them if they have checked that you are old enough to buy the thing so surely something could be programmed in to say you cant sell this person three packets of paracetamol.

Kat- wrote on January 22, 2015, 4:57 PM

Thank you for sharing and keep fighting and speaking up for those who can't. You are a very strong woman to do this, don't let anyone tell you different. By doing this you could be the reason of more awareness that leads to better treatment and possibly a cure.

Maplewinter wrote on January 22, 2015, 5:11 PM

Thank you for posting this as it has made me search out some information and actually look into how my own medication might affect something like this. I agree more needs to be done to raise awareness on these issues!

I hate stereotypes and I get them a lot. I get oh she's only young so she can't be I'll, you just need to stop being lazy and do something, you don't look I'll so must be putting it on. I have a chronic pain condition that has stopped me walking any distance and has left me virtually housebound (till I get my new wheels that is). I'm 33 and hate the fact I can't do the things I used to love.

mrsmerlin wrote on January 23, 2015, 3:09 PM

Sorry to hear you are in the same war as me albeit in a different regiment, I do tend to bring up the problem and solution whenever I can without it becoming boring (I hope). The one thing I ban absolutely is anyone saying that I am dying from my condition - NO NO NO - I am living with it until I take my last breath, x

mrsmerlin wrote on January 23, 2015, 3:10 PM

Having come across people during my journey that are suffering terribly because of unintentional paracetamol overdoses I don't even think you should be able to buy it without a pharmacist. It is the silent killer that is taken as a cure

mrsmerlin wrote on January 23, 2015, 3:11 PM

I am really not that strong but I am stubborn and hate to be beaten by health lol

mrsmerlin wrote on January 23, 2015, 3:20 PM

I understand that completely, I have had fibromyalgia for a long time and that never made me look sick. Check out the Spoon Theory - google it = it is fantastic for explaining to people about the energy problems of invisible illness

melody23 wrote on January 23, 2015, 3:38 PM

They actually tell us that its the most dangerous drug on our drugs trolleys, not because of what can potentially happen five minutes from now but because of the unseen damage that even a small accidental overdose can do to a person. People think its so safe because it is so easy to by for like 20p in the newsagents. I definitely think there should be more controls on its sale, aspirin as well for the record.

CoralLevang wrote on January 23, 2015, 4:59 PM

I even share this battle with my students each workshop, when I am sending them home to think about who they are and what they want, I suggest that they look for or something they want without regard to money, but based on who they are and what would give them joy if they could get paid for it and have "enough." I tell them, "We are all in the war together, folks, the same war. It is called "Life." It is the battle that is unique to us with the specifics, but many battles similarities, and we have to use the tools/resources/ knowledge we have at the time to deal with whatever it is." We each have an understanding of the war based on our perception learned through our particular battles. That means that I, who have a friend die in my arms due to cancer, can have an understanding of the person whose friend died in their arms due to an IED explosion and vice versa. One is not better/worse than the other. Only different. The pain, loss, grief, etc. is all the same.

And the last thing I leave them with before they go home the first day is this: "I am not dying of cancer. I am LIVING with it. What challenges are you currently living with and what can you do in this life today--every day--that will influence the world around you for good? You must be willing to look beyond the challenge you might be facing to see it. This is true whether looking for work, dealing with a medical condition, a divorce, an unwise choice/consequence, etc., etc. And living is not just waking up. Living is what you do AFTER you wake up."

CoralLevang wrote on January 23, 2015, 5:03 PM

mrsmerlin And yes....exactly.... I am LIVING with cancer....until such time it takes me or the bus with my name on it gets me first. ;)