Hello everyone. I've just joined because I am caring for someone with cirrhosis of the liver. We're going through the difficult process of waiting for test results to indicate the staging severity. Although we've been given information, there appears very little to equip an individual or carer to feel able to recognise early warning signs of e.g. Jaundice or confusion, which we're told might happen. A blanket "It's all individual" doesn't help, I know this. I want to support the person without making them feel disempowered. Above all we're looking to enhance quality of life, however long that might be. We've had CT scan results, which took 6 weeks and now we're awaiting blood tests and endoscopy (looking for varices).
We're familiar with the "waiting game" as I was diagnosed with cancer 18 months ago, so I have good strategies to manage over thinking, stress and anxiety. But I do feel very isolated.
I would very much like to know how other people are managing
Welcome to the forum I know you will find it useful. It’s true all our conditions are different but with people sharing their experience you will find a scenario similar to what your experiencing.
Just ask with any queries and someone will be able to help.
Doctors are the best source but there can be times where you can’t speak to a consultant so this forum helps.
Knowing others are struggling through is comforting to know your not on your own
Best of luck we all appreciate our carers
Hi,
Welcome to the forum.
The British Liver Trust have a huge range of information on cirrhosis on our website. There is also information on support groups and the work we do.
Hi ShazzJE, Sounds like you have the attribute needed in a carer - empathy. Because of your own experience in surviving a life-threatening disease, you already have some answers. I find Lectures don't empower, sharing does.
I was diagnosed with cirrhosis, Grade 1 varices Last October. I was full of fear after a liver decompensation event plus atrial flutter. Due to alcoholism & living with Hepatitis C, my heart was pickled & liver hardened. I had a bust & nearly burst!
I found this site & others with as similar story. I was scared & scarred. They kindly allayed my fears. The best advice was to "put all my ducks in a row". And as a diabetic also, I had a few other but not immediately life-threatening ducks to line up.
So I hang on to that "event" & plug into a higher power everyday. I just put in an extra "o" for God! & look for the good. The good news was I was still in with a chance. Found many good people by looking in the right direction.
I stopped putting toxins into my body so I could start the new treatment to rid the virus. Started eating from the Mediterranean menu recommended by a handsome Gastroenterologist . I kept in contact with the rehab hospital staff who saved my life & attended allied health day programs for six months.
So I knew from previous times of sobriety I had to get back to my tribe attending support meetings & actually work on the recovery steps. The damage to my body had forced me out of denial. I found another tribe here, BLF. I also had: an understanding GP; a case manager at Alcohol & Other Drugs Service & the liver clinic nurse. I attend a weekly Mindfulness Based Relapse Prevention. All help in dealing with my emotional state - which IS like a rollercoaster.
For anxiety I paid $60AUS for a Calm app which is a godsend (presently listening to waves lapping the beach as I live inland in Australia). Best spend ever for anxiety relief.
The Trust's advice on carer support is worth taking. When I looked after my brave, ageing mum, the carer support was invaluable. They even sent a Christmas card.
Hope this helps. All the best.
Calmer.
Dear Damasc thank you for your reply and supportive words. Im an occupational therapist in mental health and I do try and practice what I preach about relaxation, mindfulness. I keep a gratitude diary, which helps.
I know the feeling. I have "stable cirhosis", and Parkinson's disease on top of that. Just had my bi annual ultra sound. Technician said no mass seen in liver, but I will wait for the doctor's analysis. Hang in there ShazzJE. I am determined to live what's left, to the fullest, however long or short life maybe. Nobody is promised another minute in this world of "life", no matter how young,old, healthy, or unhealthy we may be. I wish you and yours a peaceful journey and all the best. Always, David.
Hi ShazzJE, How did your client's endoscopy go? How are you going? There have been recent posts on Stages of Cirrhosis that you might be interested in. I am not on the site very often but am finding it very comforting & helpful reading & replying to posts. Mindfulness practice is going strong. Hope your client
Is doing OK.
Hi Damasc thank you for asking. My relative is still waiting for the endoscopy, but we have a date. It's a 16 week waiting list! I've not been on this site for ages, as we've no news. I really appreciate you asking
Try other groups as well. There are many on Facebook many are very good, I belong to many , and admin on one, its helped me enormously to expand my knowledge and gain much better insights .
Welcome to the group. Just wanted to let you know I to am taking care of a person with cirrhosis..I am here for you if you ever need a chat...its a great support group here...looking forward to hearing from you...
Welcome I too was diagnosed with breast cancer mangy moons ago and 4 years ago my husband was diagnosed with cirrhosis with varices he and everything that goes with it. He got more and more ill and initially he refused a transplant purely through fear. My son and I kept on at him and he was finally listed in October 2017and had a transplant in November 2017. Things haven't gone too smoothly since but he's still here with me and he wouldn't have been without it as by then he also had liver cancer. If you ever need to talk just pm me and I hippie the tests all go well for you good luck xxx
My wife was diagnosed with acute cirrhosis in April and until today we were being told not to drink, low salt diet , and wait. We decided to change liver doctors and had our first phone consult today. This doctor answered all of my questions that he could, and let us know what he couldn’t answer. The best thing is that he has given us hope that even a liver with cirrhosis can heal some, and her quality of life can improve. We are in the States and were fortunate to be able to change docs, because the “blood test in 30 days and go from there” was not working for us. We are still getting conflicting information, and going on our gut instinct, researching online, and reading things here to make some final decisions. One doctor will say drink lots of water the other says no, one says no salt another says Himalayan sea salt. Remember that doctors are people who with similar education will have different answers. The worst part was that the first liver doc gave us no idea what to expect when we got home from the hospital, and there have been some rocky times.
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This is so new to me 😷😢
New to this!!
