Liver disease due to Hemochromatosis - British Liver Trust

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Liver disease due to Hemochromatosis

Buffy2 profile image
6 Replies

I had another scan last week which confirmed coarse echotexture and also fatty liver :( . I also have stage 2 fibrosis. The thing is I really don't know what I should be doing, if I should be worried and how to feel about it all. My family and friends are all very relieved that it is not cirrhosis, therefore seem to think I should be pleased too. I am a positive person and the majority of the time I am thinking it will all be ok. But every now and again I feel sorry for myself, but feel very alone in it. How does everyone else on here deal with it all?

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Buffy2
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6 Replies

Hi there buffy2, I hear your feelings and believe me I know how you feel. Most folks on here are all going through their own personal battles.

Some, indeed most, are really awesome when it comes to offering you great advice and support.

Truly they are awesome.

So, the first thing I can say to you is that you have arrived in just the right place.

The people here will spring into action and your fears will not exactly melt away. But you will find so much support that all will feel so much better.

Now having said that I am not the right person to offer advice. Just not qualified or know enough about anything lol.

I am however qualified to offer a virtual hug and loads of love.

Rest now and be at peace, you are in just the right place now.

Take care, stay well and happy.

Jaycee xx

Porphyriamaniac profile image
Porphyriamaniac

Hi Buffy, I'm sorry to hear of your troubles and worries, I can understand totally. I have a liver condition that can lead to cirhossis and cancer, and strangely the treatment is the same as for haemochromatosis! Have you been de-ironed? You must keep up with that regimen, rubbish as it is. I'm currently waiting on yesterday's ferritin results to see if it's dropped below 50, and appointment with a gastro to check properly on my liver. Since I started my venesections 3 months ago, my alt liver enzymes have dropped into the normal range, they'd been high for 3+ years! So take heart that the de-ironing does have a positive effect on the liver. If you eat well, don't drink, look after yourself as best you can and keep up with treatment I don't see why your liver disease should worsen and it may even heal. All the best to you, Stacie. Xxxx

Buffy2 profile image
Buffy2 in reply toPorphyriamaniac

Hi Stacie, Yes I have been de-ironed and hopefully my condition will not worsen. I am trying to look after myself and have completely changed my diet. I hope you continue to improve to, all the best for 2019. Marie xx

Abby14 profile image
Abby14

Hey, It is very hard :( I have chrrioss already :( & worry all the time! all you can do do is keep as healthy as you can :) It is a very scary time! We all have an idea of what you are going though! we are all here to support you :) You are possialy at the stage you can revesve the damage :)

Buffy2 profile image
Buffy2 in reply toAbby14

Sorry to hear you have cirrhosis :( There are so many different ways that the liver can be affected and people have many different experiences. I am just trying to look after myself the best I can. I have changed my diet completely and stopped drinking any alcohol. I hope 2019 brings better news for you healthwise.

best wishes

Abby14 profile image
Abby14 in reply toBuffy2

Thanks :) You to! Well done for giving up drinking! I hope the new year brings you better health as well :) I am seeing my conulant on the 11th!

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