Newly diagnosed with a fragile liver

Recently diagnosed with two very rare genetic liver disorders that has left my liver very fragile. Researching the diseases is quite uncomfortable, including the implications if any to my children. As yet no symptoms but must change lifestyle regarding alcohol, medications and maybe diet. Doctors tell me that my liver is functioning but there may be irreversible cirrohsis. Due for a fibroscan and more blood tests, have been referred to a liver specialist. Recently had an Ultrasound and two different type of MRIs. Not sure how serious this news is, not sure how to absorb this new health issue. I'm a fit person, who has several medical conditions which I manage with medication but beginning to feel nervous with this new problem. How do you stop this concern dominating your life?

[jojokarak]

We all find different ways to cope. I personally wouldn't worry too much until you receive the results from MRI and ultrasound as you could be worrying about nothing. As you mentioned above alcohol and medication and food and exercise is the only thing you have any control over and are the best things to focus on at moment. Also avoid reading up on the possible conditions we all suffer different symptoms not one of us are the same x

[Hidden in reply to jojokarak]

Hi jojokarak, thank you for your reply. I will carry on living healthfully and stop reading so much. Clarity of the conditions from the exam results will help me to settle down a bit. I think I was just letting it all get to me.

[jojokarak in reply to Hidden]

The results will help as they will give the doctors a direction to head in for your best interests. And I do understand the not knowing it took about 9 months for them to diagnose me but I just got on with my life and then dealt with it all afterwards x

[19581979]

Hi Goldenday

As already mentioned it can be scary reading different sites. The basic rules to help yourself are:

1. Learn what is healthy to eat and what are sensible portions. The NHS website is useful here. It can take a few different entries though. I'm overweight so the bmi counter was a good starting point for me.

2.watch what you drink. Alcohol, being the bad guy is the main one, but there are others. Watching out for too much sugar, salt and additives is important. Equally making sure you drink the right amount of fluid.

3. Healthy exercise. Getting the right type of exercise for your body is important.

4. Having enough quality sleep.

5. Working out with your medical team what are the right medication for you. I have to have some of the ones I should be careful about, because of other health issues. Without them I can't move about very well, which would create even more problems. It is about the safest path through a minefield sometimes. This includes checking out the supplements you can get over the counter with your medical team. They can also cause problems.

6. Having fun and taking each day one at a time. If you make positive changes in your life, give yourself the recognition you are doing what you can to help yourself. Finding positives in our lives even when things feel really rough helps.

7. Be careful about the sites you go on. They can be scary especially if you don't have enough information about your specific condition and can cost you a fortune with their books on detox, special diets etcetera.

Keep it simple and try to not worry too much.

Gx

[Ronin990 in reply to 19581979]

Great advice.

[Hidden]

Dear 19581979

Thank you for your advice, it is easy to become self absorbed with your problems.

I had recently recovered from a major operation and was looking forward positively when they found this issue during a check up for something else.

I tried not to worry and kept a positive outlook.

I had given myself new set of personal goals to achieve following this operation. But when a new issue comes up it shakes you off that path, it takes time to climb back on board so to speak.

One day at a time .

Thank you again for your kind replies.

[Taivic]

Be strong for yourself and your family, hope for d best and follow Doctor's advise.