Ongoing Checks for people with Cirrhosis

[KempSarah]

Hi

My Mum has just been diagnosed with cirrhosis (Stage 2) but all the tests to determine the cause of it have proved inconclusive. The Doctor at Kettering General Hospital just wants to see her for a review in 6 months time - which seems like a long time away! I was wondering what ongoing checks other people have if they have cirrhosis (eg blood pressure (my mum had oesophageal varices), liver function blood tests (not that they ever showed anything up for my Mum!) etc). Any help much appreciated

[carmik]

Hi

Has she been tested for alpha1 antitrypsin deficiency.?

If not ask for it. Took them months to find what was wrong with my hubby and then more months to find the above cause.

If you need more info on this look it up on line. It is a simple blood test. This is a hereditary problem.

Good luck

[KempSarah in reply to carmik]

Hi Carmik

Yes, she had the alpha1 test and it is not that that has caused her cirrhosis. But thank you for the info

Sarah

[Hidden]

Hi

When I was first diagnosed I was on 6 monthly visits, which included scans every other visit, it was only when it got worse did the frequency increase.

I hope that helps

David

[Dldtx]

I have Cirrhosis and for me there are standing reoccurring Maintenance procedures by my specialist just for Cirrhosis that are done each 90 days and six months like blood test (AFP) and cat scans or a mri or etc... then depending on your needs there maybe more test needed, I also have the same for lungs and heart, then yearly and or two and three years there are more separate set of test done like a regular abdominal ultrasound to determine elasticity of the liver upper and lower GI’s.

🤠 DLD

[Brett11]

I get them generally every 3 months with blood tests every month and the camera up the bottom once a year thankfully. If things get worse then they become more regular. We are lucky in Australia, it’s all free.

[grannyd53]

I now have Nash and was told so in November after 5 years ago a doctor telling me I had a fatty liver and I laughed and said why would my liver be fat I am doctor didn't address it anymore. Thank God I have a new doctor and in November while running routine lab work for cholesterol medicine found some issues that caused her to order an ultrasound showing that I had an enlarged spleen as well as cirrhosis you could have knocked me over with a feather. I have lost three relatives from alcohol-related cirrhosis and knew how horrible it was so knew I was scared. Thank God for a friend who told me about a medical research company pinnacle that was doing a study on fatty liver diseases so I went and got tested the biopsy showed that yes I did have some cirrhosis and folks the biopsy was not painful at all and I am a coward when it comes to Needles just thought I'd throw that in. I began taking the research drug on January 23rd where my fibroscan showed it gone from 20.8 to 8.0 showing the density of my cirrhosis had reduced as well as the fat in my liver going from around 330 to 131 I believe. Those of you have had five or scans will understand what I'm talking about. Anyway after suffering some side effects causing discomfort the medicine is finally leveled out in my system after 6 months and I will continue taking it for another year where they will follow up with all the test again. Even though mine was not caused from alcohol I no longer can enjoy a casual drink and I've lost weight and that's the biggest part of it because of being overweight even though skinny people can have fatty liver disease. I urge everyone to share what you are going through because I found several people that I've talked to that were told they had fatty liver and was dropped at that never being told it could go into cirrhosis are even liver cancer. Hoping this will give all of you some hope as it is giving me knowing that I can live a normal life at 65 I can maybe at least enjoy my golden years