Hello. I’m in search of positivity. How do people keep their spirits up in the face of the terrible turns cirrhosis can take? I’ve certainly nothing to complain about and am extremely grateful for my asymptomatic compensated status; however, I sometimes can’t help but feel like my liver’s health is a ticking bomb that can go off at any moment and things spiral quickly downward. Today’s is one of those moments.
Thanks to those who care to chime in.
As your diagnosis is not yet fully/100% confirmed (one fibroscan is not a sufficient test to absolutely confirm cirrhosis) and you are totally asymptomatic then as i've said to you before just concentrate on living your best life.
Why fret the what if's that may or may not ever happen? If you live your life constantly worrying about what may or me not be round the corner you are going to have a pretty miserable existance. No one is guaranteed a tomorrow so live your best today.
My hubby was diagnosed with decompensated cirrhosis in April 2012, when he left hospital after 3 weeks he set himself the goal of walking to the bridge in our village, then a bit further and a bit further. Last year he set himself the goal of walking between two local monuments - a total of 16 1/2 miles and he did it.
His diagnosis had come literally over night and had 'wrecked' the life he had and the one he hoped to live and for some time he had a rough time with adjustment depression - as it was labelled.
He was listed for transplant in 2014 but delisted after 10 months and that led to another wee dip in mood as although it meant he was doing better it also seemed like the light at the end of the tunnel had been snuffed out. HOWEVER, we were both determined to live what life he has to the max.
My mum and dad helped us buy a new touring caravan and we try to get away as much as possible, we do lots of walking including pretty big hills and in September we both got into cycling - whilst I got laid up with a damaged knee he has carried on and up to New Year did 300 miles cycling. In January he has completed 200 miles on his bike.
You need to just live your best life, forget about what ifs (yes you want to keep an eye on potential symptoms but not dwell on them). My hubby NEVER goes on line to look up anything about cirrhosis, he just lives his life.
Katie
Thanks again, Katie. Your reply is the jab in the arm I needed today. I have low points I need to navigate but I’m determined to overcome with time.
what an inspiration Katie.....that will keep me going for the rest of the week ...ur words of wisdom...my best chris
Well bloody put about your husband, I didn't want to say anything yesterday (I wasn't in the mood) but how brilliant is his attitude (bugger that I'm off out ont bike) 😃.
Totally agree with what you have said Katy. I wasn't diagnosed with nafld with nash, fibrosis and cirrhosis until I bled out at home and then on the operating table. I am lucky to still be alive. I count every day as a blessing. I have 21 other diagnosed conditions, so juggling diets is my biggest battle, but I live life to the full with a smile on my face. Take baby steps. You have already taken the biggest ones so now you can build on those. Good luck. X
Hi Quas
When I start to feel it's on the downward slope, regardless of why, I look to change it by singing along to happy music, or watching comedy... .... whatever you can find to break that path will be the best weapon you have to make you feel less down.
Dave
Thanks DG - good suggestions. Some days it’s a tough slog but your suggestions make a great deal of sense. I’ll try them.
Fresh air and exercise ... best tonic 🌞
Appreciate the life you do have, live it to its full while you can do whilst treating your liver as nicely as you can do. As Laura said fresh air and exercise - they are great for both the mind and body. Don't dwell on your illness - it's all wasted time and energy. Focus on what you can do, not what you can't do. x
I don't recall who said it - it was another poster on this message same board who was feeling the way you are right now. He went to his doctor, who said to him; (I'm paraphrasing) -
"No-one has given you any kind of death sentence. Things are getting better! Of course come in if you have new and bad symptoms but for now - you know what to do and what not to drink. Apart from that, you just live your normal life, have fun, sleep, don't stress and let us do the worrying for you....see you in six months..."
What a solid doctor! Great advice!
Thank you all who took the time to respond. I appreciate each of you and the wisdom imparted. I truly wish my liver specialist would’ve taken the same tactful approach. In fact, it’s too bad all doctors aren’t required to take training on empathic and compassionate care before graduating medical school.
It's probably difficult for you when you get in the routine of thinking on the "dark side". As other members have advised, you have not been officially diagnosed so please dismiss negative thoughts. Fresh air and walking will do you the power of good as you get to meet people on a daily basis. I always stop and have a chat but make sure I keep my distance. Some people I know personally but many are characters I have never come across. This makes you feel much better when you get home. Take care and live your day to day life. Keep positive.
Thank you teletonetapper. I can only go by the fibroscan score of F4 cirrhosis to date. However, I also had an abdominal ultrasound scan shortly after in December to which my liver doctor hasn’t updated me about. Given that it was more than a month ago, I can only presume the results were nothing she needed to inform me about. However, can US detect cirrhosis and its severity?
Hi there Quas. I'm not sure whether a US can detect how severe Cirrhosis is. An US can reveal the stiffness of the liver and any other issues caused by liver disease. It is probably best to talk to your Team. Stay positive, you will find plenty of support on this forum as you know. Have you thought about ringing the BLT helpline. They may know the answer and give you advice too. Take care and look on the bright side.
Personally, I very rarely think about it. I don’t worry if I’m a bit achy/tired or get a little twinge. When I last met with my consultant, we laughed about me being his most positive and laid back cirrhosis patient. I don’t know my levels of ‘stuff’ from blood tests and I am happy with that. Otherwise I’d be looking to compare and monitor changes and probably become a little bit obsessed!! I gave up Google (for all things liver) after diagnosis and I look forward to my follow up letter from the consultant that basically explains how I’m doing, how my health is etc.I don’t want to waste time as I am enjoying living life- being able to work full time, enjoy my garden and lose myself in my different interests.
As soon as I was walked out of the hospital on the day of my diagnosis, I literally said to myself “let’s crack on with this then”, and that’s what I did.
I know everybody’s different, but I have found keeping a routine of eating the right things, getting exercise, almost making it a part of the daily routine all quite satisfying and that’s a nice place to be instead of thinking about things too deeply! 😊
Welshie, thank you for responding. I must say, your thoughts on this are the breath of fresh air I needed.
Hi Quas,Put on your favorite comedy and laugh your backside off. Start off the morning with your fav song from the year you turned 18. Brew up a cup of coffee while you're watching. It will help your liver. Make sure you are getting your Vitamin D, because the D will help your mood, even if you're not D -deficient. Drink another cup of coffee. Do you eat fish? Throw a piece of salmon on the stove for lunch/dinner (it has loads of Vit D ). Rinse and repeat.
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