I've been a lurker since being diagnosed in August 2020.
1. Thank you to everyone that posts. It's been incredibly important to know I am not alone.
2. Reflecting back how incredibly scary it was to get my diagnosis, just want to encourage anyone who is just starting. I haven't found another board like this, and there is so much good advice.
Written by
BlackberryFan
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We are delighted you have found our forum so helpful
That’s one of the reasons why I post. To encourage others that you can live a decent life even with cirrhosis. Not a perfect one by any means, but a happy and enjoyable one. As long as you listen and take heed the advice from the Hepatologist I’m 9 years on from my diagnosis and just proves it can be done. To anyone reading who’s at the beginning of your journey, be patient, be strong and seek help and there is light at the end of the tunnel.
The majority of members are friendly and very helpful.
Thank you for this - I am curious - how bad were you in at the beginning? I am wondering the same thing - mine is from alcohol and I presented with ascites but had nothing else and so far knock wood no other symptoms. I understand that if we maintain and do not drink, we exercise and we have a good diet we should stay as we are today if we have stopped the progress? My Dr diagnosed me due to the ascites but I still cannot help feel I do not have it - if this is the worst it gets for me as long as I do what I am told then that would be ok but I do not really know if that is true....my Dr told me I could live for 30 more years and there are "different types of cirrhosis" when I asked her about my life expectancy. My liver stiffness is a 9.0 kPa and the liver shows fairly homogenous with normal echogenicity...the Dr said after a month my liver was fully functioning...so again - this just doesn't make sense that I could have cirrhosis...anyway I will keep up doing the right things and hope and pray 😍
I was diagnosed nearly 12 years ago. Mine was due to excess alcohol. I haven’t drank since diagnosis and never will. I had ascites. And was quite ill. I’ve managed to maintain an ok life. It’s not easy. My main problem is fatigue. But I’m ok. On diagnosis I didn’t present with varices but over the years they developed and I had 10 banded. I understand that if you develop ascites your liver is in a bad way so I’m not sure about your liver it certainly took me a lot longer than a month to show any improvement though
Try not to worry. The NHS is far from perfect but they saved my life and I thank them from the bottom of my heart.
There is a life with Cirrosis. I’ll be 60 soon and don’t look too bad lol I plan to be around for as long as I can. Take care.
That is the odd thing - with ascites people seem to be pretty sick or need to be hospitalized and I was perfectly fine...the bloodwork was not 100% in line but mostly has been and within about 5 weeks my Dr said everything LFTs and liver was stable - I guess I carry on!
My journey was a bit convoluted and treatment stateside (US) is mostly “stop drinking, come back in 6 months.” When diagnosed, I was told I had a very high likelihood of dying within 6 months. Later discovered the doctor completely misinterpreted the electronic health record’s automated readout. What it said was that I had a 97% chance of 6-month survival of a liver transplant, and what he told me was 97% chance of dying without one. I was never even close to needing a transplant. Terrible case of medical psychological trauma, but he dented it when we filed a complaint.
The prognosis for some types are good, if the causative agent can be controlled. So even if is it cirrhosis, it may be fine. I wouldn’t get so focused on the actual diagnosis, especially since cirrhosis is such a mixed bag.
Some people have claimed they are diagnosed with fatty liver or fibrosis (not cirrhosis), and they don’t appear to have better health or bloodwork than me. I try and deal with the details, not the diagnosis. I feel fantastic!
If you take care of the details, the diagnosis will 🤞 follow suit. Just a suggestion.
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