Avalanche of progression

[mrsmerlin]

Been a long time since I posted but I have noticed a few posts about not getting proper monitoring so I thought I would update you.

After a few years of pretty stable disease with a fibroscan result between 10 and 15 yearly, (treated as NAFLD/AIH as both apply - greedy aren't I?

9 months ago I was found to have some fibrosis but not that much. 8 months later and there was significant worsening.

1 month later (last week) I have been diagnosed with f3 borderline f4 cirrhosis. Came as a bit of a shock that it nosedived so quickly after being stable for so long.

I have now been put on 6 monthly ultrasound (checking for signs of cancer), 6 monthly endoscopes, monthly bloods, 6 months with specialist and 2 monthly with GP assuming no further changes.

I'm not too scared to be honest because I have gleaned so much information from this forum and the BLT directly. I know what I'm facing and know I can call my GP and/or specialist with any questions or worries.

I have been told to use CBD hemp oil (cannabis seed oil with the bad bits taken out) so am adding that in to my daily diet - surprisingly fresh and herby.

The reason for this update is to illustrate that your doctors should never be complacent about your disease. Once you have been given a diagnosis based on specialist tests you not only have a right to, but positively need monitoring even if yearly. A blood test alone is not enough for diagnosis but does require follow up unless it's a minor rise and you have have a current reason for the rise, unless the results are unchanged on further blood tests. 'Normal' is a wide range in the results.

I know that I am lucky with my doctors, possibly because I live in a rural town and things seem to run differently. If you aren't lucky and you need to know more then push for it. Be the mosquito in the ear of your doctor and insist on further testing and referral to a hospital specialist. You could dive as quickly as I have without knowing about it.

Rita

[Millie09]

Hi mrsmerlin , I could not have said that any better myself. 9 yrs I have been living with cirrhosis. I was given 6 months to live in 2008 .after having 3 drains from ascites and many scans and one endoscopy I was discharged completely in 2010. My liver disease was due to alcohol and malnutrition. I went plodding on thinking I was fine. Was never called up for any checks untill I lost my dad to cancer. I took care of him from day one till the end. I fell off the wagon as I did not care anymore. I drank for a good year untill the old ascites started again . It did take me a good three months to get off the drink with the support from Aquarius and home detox. Was only last November after joining this forum did I realise I had no care plan or even know the state of my liver... well I was shocked. I'm f4 .with a fibrosis score of 27 😐. Mild hepatic encephalopathy due to my awful sleep pattern or lack of it and becoming confused or forgetful. I also have some sort of neuropathy. I have a gastropothy booked on 23 June of which I am dreading yet my lft is good and the scan showed.no varices or cancer. A dexa scan again on 8th June and waiting on an MRI scan and nerve tests... I am very unhappy about the lack of any care from 2010 till now. Yet it was me that had to push my dr for referral to hepetology. I won't lie but I am scared now but glad to be under one of the top transplant hospitals in the UK. I really hope others go see their own dr or consultant to stay on top of things 😊

[mrsmerlin in reply to Millie09]

It makes me so mad how some doctors seem to have a blanket view on cirrhosis, that it's self inflicted. Either alcohol, drugs or overeating so they don't mark it a priority.

Beside the fact that it's bull it's hypocritical. Lung cancer patients who smoke aren't treated this way. Yet they have images on each box warning them. I have noticed a marked increase in the bariatric ops in the hospital op lists as well.

I'm really glad you are being treated right now but really feel for what you went through because of ignorance.

When my Dad was in hospital with a terminal brain cancer he said something I focus on with every test. It's corny but ...

You will walk out of the test in exactly the same way you walk in (or wheel for me). All that changes is that your doctor should know which path you are on and be able to tell you.

If you walk in the dark you bump into things much less if you have a torch.

....

This forum is amazing for support and education and we should all be fighting for our rights now.

Rita xx

[Millie09 in reply to mrsmerlin]

Hi Rita, you are so correct in what you say, I did not choose to become an alcoholic, yes it was only me that decided to pick that drink up but it was my only way that I knew how to cope with the abuse of physical and mental abuse from now my 3rd husband thank God. I could not walk with 3 children so I put up with it until I knew they could stand on their own feet. My dad was my rock and my best friend . I am sorry to hear about your diagnosis Rita, that was exactly how it went with me . You seem to have much positivity and I am very interested in this hemp oil , and what dirt you are on now.. My dr said lots of carbs and protein. But I am not really one for carbs. 😐. I love the way you explain things.... to be honest with you, .My dad had long cancer; his lung removed but 4 months later it had gone to his brain....... it really annoys me when friends I know when I tell them about my illness and say " it's no life without drink " I try to tell them yes in moderation but even my neighbour drinks 7% cider from early morning and I do tell him but he won't listen... more awareness should be put into place. They have documentaries about cancer people and yes they have had tv programmes on the dangers of drink but more needs to be done..i would love to go to a liver support group but there is only one at the QE hospital where I go but as I don't drive it's too far for me to travel including my appointments as I have to go by taxi... when I think of all the horrid tests my dad went through he still came out with a smile on his face even if he was nervous. I hope you are keeping well, and being monitored by your hepetologist ☺. I am just glad we are now under the care of great doctors. Many thanks for your inspirational post..please keep in touch and let me know how you go .we will fight for our rights and hopefully others will not reach the stage we have due to lack of care.. love Linda xxx