Hi there, My mom has been diagnosed with Cirrhosis and I've narrowed it down to being stage 4 based off of her having Portal Hypertension, Ascites. I hope I'm wrong though.
My mom is my world, I love her and the idea of losing her is like losing a piece of me. I'm only 24 and I'm freaking out. She won't even see me get married at this rate.
Right now she's on Spiro 25mg, They are upping it to 50mg next month with Furo 40mg.
From what I understand the doctors say that she has had too many past surgeries where doing a transplant would be too risky. Not sure if what they mean is that being on the list would be pointless as someone would always be ahead or if it is legitimately too high of a risk.
I'm interested in being a live liver donor for her, but I'm just in the early stages of looking into it and my moms just only gotten back from the hospital 2 days ago.
The doctors didn't even really tell her much, was a joke. They didn't even tell her she was essentially dying. Just that surgery might not be a good choice.
My question is this, with proper diet, medication & exercise can she improve her odds with surgery? Or even slow down the cirrhosis? Generally what is the life span of people with Cirrhosis?
Thing is that she doesn't drink, doesn't smoke, doesn't have any hep or anything like that.
She's always ate relatively well, she's had issues with bowel obstructions for the last couple years which is most likely due to the Cirrhosis that we JUST found out about.
I know I should be asking her doctor but she doesn't have another visit for about a month and I'd like to get information, as vague as it might be. Even guesses.
Also I would looove recommendations, whatever you have I wanna hear it.
Thanks for taking the time to read everyone
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x0adam0x
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I would honestly complain to the hospital through their complaints procedure about your lack of information, I did and received a response within a day. With my mums permission, I was able to meet with her consultant the next day and obtain all my answers. Good luck xxx
Hi, from your post I would guess that you don't have as much information as you would like because your mom saw the doctor on her own. It may be that she doesn't want you to speak to her doctors to save you worrying or for any of many possible reasons. Hard as this may be to accept, if it turns out to be the case you would have to respect her wishes.
The problem with the internet is that we can access all kinds of information and begin self-diagnosing which it seems you have done to some extent. I'm not criticising you for that (we've all been there) but sometimes we add 2 +2 and come up with a5 or more. At the moment this is all new and very raw but please don't panic so much, treatment is so much better than it used to be - ignore the nonsense in the news over the post couple of Weeks, that's just over inflammatory editors doing their job. Your mom may not be under the death sentence you fear. If she is life limited it is important to remember an important fact - she is not dying from liver disease, rather she is living with it for as long as she has. N never give up on her. If your sums do turn out to be right perhaps your mom would want to go on one of the trials for new treatments which could make a real difference.
Sorry this has been such a long reply, it didn't start out that way lol. I have just one more vital fact for you - whatever happens please know we are her for you and your mom, you aren't alone as we're all in this together. X
Ask the consultant if there are any trials she would be eligible for. They have to test new meds and treatments on patients before they are licenced.
But add I said before take a deep breath, talk to your mom to see if she had told you everything and don't go booking her funeral in your mind she could have decades left, you never know. Positivity is an excellent medicine in all cases. X
Dunno if there is an average live expectancy but I've had cirrhosis for nearly 20 years and have had portal hypertension for over 3 years; no ascites yet though. I've known ppl who were diagnosed with Hep B virus from blood transfusions only last 10 months and others like me who have had the disease for over 20 years, got cured and still have had 20 years more. My consultant says I'm unlikely to need a TP as the disease progression is so slow. Go to the hospital and collar the consultant and ask for more details and good luck
Hi. Your write up gives me great courage. I have not been diagnosed for cirrhosis . No scarring of liver etc.,But diagnosed with mild spleen enlargement plus a portal vien dia of 18 mm by extra contrast CT scan . All my Ast/alt levels R below 60 . Bilirubin 1.1. Rest all fine .I was worried about portal dia 18mmby CT vs 12mm by ultra sound. Pl keep in touch bro I am 57. You redused my mental pressure
Hello, my mum has just returned from her appointment with her liver specialist this morning (her first consultation since diagnosis of cirrhosis, portal and ascites in November). They are arranging a consultation with the liver transplant team next month as her ascites is really bad so I share your concerns.
My mum got taken into hospital six months ago with breathlessness and racing pulse but has been generally unwell for many years. She had the tell tale signs of liver damage (spider veins on her neck and back admission to A&E with same symptoms 3 years ago but discharged with no diagnosis) for at least the past 5 years but as she is also diabetic she was told by her local GP that she was bound to feel ill and kept on being dismissed. We have spent the last six months rushing her into A&E for emergency blood transfusions, UTI, chest infections etc. I feel completely let down by the NHS over her treatment and how it could have got this far in the first place. We were not informed about what could happen to you with this condition and how she could be losing blood through her varices until she literally could not stand up when her blood levels got so low. I feel like we have had to use the internet to self diagnose and understand her illness as there is not a lot of information given to you.
I am also interested in being a live donor but will have to wait another month to be able to find out further info on this and I am just thinking how long does she have before her liver completely fails.
I just wanted to wish you and your mum good luck. You are not alone x
Thanks the the reply! My mom was actually brought in yesterday to emergancy and our paramedic that took us was incredible. He fought for my mom and was specifically going out of his way to get her treated. He also pulled me aside and told me that I have to beat the medical system by telling them I need to speak to a social worker. Social worker came and talked to me and pushed everything. They finally admitted her and started the tap today she's seeing a specialist in two weeks and is still being treated. She has minor bleed but as far as they can tell its not serious. Well find out more tomorrow. This is especially hard considering I'm 24 and hospital staff likes to take advantage of my age.
I'm glad your mom is starting to get the treatment she needs. If you are worried tell the nurses that you want to be there when the consultant does his rounds. Unfortunately this is normally outside visiting hours in the morning but we wanted to be there for my mum so they would allow us to come in for an hour when he was due.
My mum has undergone 8 blood transfusions as she had 5 bleeding varices. Unfortunately no-one told us what the warning signs were when her blood was low so we had go through many stressful dashes to A&E, they are however under control for now as she has undergone the treatment for her bleeding varices which are also for the time being under control. There are some things that I wished I had been told 6 months ago as it would have been easier to cope with and understand why certain things were happening so try to get as much information from the medical professions as possible whilst your mom is in hospital.
my Dad, 68, looks 8 months pregnant. He is an old Vietnam war vet and is refusing treatment up until today. He is at most 5'5" with a HUGE potbelly. He was diagnosed with Hep C 10 years ago and the Dr. Told him them he had the beginning stages of cirrhosis. He has NO appetite. My mom says he may be eats six bites of food a day!! How long do you think he's going to live??
Your Father god bless him, he needs to go and see a gp.Are you in the UK OR USA.Is his pot belly down to alchohol and Cirrhosis.If he is still drinking he is in danger from Ascites (swollen belly),Hepatic Encephalopathy,
and Fluid build up.Is he got any signs of confusion?i've got both of these illness's and believe me he needs to see a gp or specialist before things deteriate.Also he needs to eat healthier and more.
Hi jd83, I'm sorry to hear about your father especially as he has givensomuch as a VET. I was just Dx with early cirrhosis and had horrible ascites. I'm 5'4" normally 102lb, looked 6 mo pregnant, had put on 10 lbs of fluid! My appetite is down too because digestion isn't efficient and I can get uncomfortable from the bloating. My GP has me on 100mg/daily of spironolactone. Dosage ranges from 200 - 300mg/day at the upper limits. I'm also on furosemide (diuretic) one a day. The spironolactone has really helped with the fluid retention. It's taken about a month but I've lost about 8 lbs of the fluid. The spironolactone apparently can take awhile to be most effective. My father has HepC and is on the 12 week new drug protocol. It is highly effective against Hep C with few side effects. Once/day tablet. It is very expensive, but in the US, we can get govt approval to pay.
Ask the GP to refer your father to a Hepatologist (liver specialist). Their expertise is specifically this area. Ask the hepatologist if the new drug is possibility for your father. Ask to up his spironolactone. Meanwhile, be careful that your father does not dip into depression. I was doing that due to the fatigue and mental cloudiness which along with the fluid made me so discouraged. I am now also on anti-depressants which has greatly helped. I am able to be up and about at least 14 hrs/day.
Also, your father must reduce his salt intake. Ideally (but difficult) to less than 2g/day. Best way is to avoid eating out.
As for how long your father will live. From what I've researched, he can live many years if the cirrhosis and symptoms are managed. There are other down the road treatments (portal shunts, transplantation).
Also, he should be checked to confirm whether he has esophageal varices (enlarged blood vessels) which can erupt unexpectedly and it life-threatening. Banding of visible vessels is effective for this.
its all about the doctors and medical facilities you are getting. if you get better doctor anf better medical facilities your mom will survive otherwise it is very difficult for her to survive after having tense ascites. my mom also died last month in this same disease i am a poor person so i was unable to give her better medical facilities. so dont think about money, go and save her life. what is the value of mom? "Ask those who lost theier mom". there is nothing in this world more precious then mom.
Hello i Need some information , my uncle did an ultrasound and they saw PVT and some lesions on one side of his liver...they gave him till December to see back a doctor to do a CT scan can whatever is happening with his liver become worse in a few weeks time?
Hi. 4 years ago I was diagnosed with PVT. I had 14 elisions/tumours, I now have 18 depending on what type of tumours/how poorly they are can depend on growth rate.3/6 months is a normal time to wait. Good luck
Could she be a candidate for a TIPs? I've had one for about 7 yrs now with one revision, and I have to say to pros weight out the cons. For me anyways. Although, it has brought me several limitations to my personal life, it beats out having the huge belly/discomfort and being tapped weekly. However, my life was on the line and it was the only choice my family had to make.
Hi there hope your ok and keeping positive I’ve the same as your mum except had a few more issues since my first bleed five years ago I’m in full time work and living a relatively normal life I’m 49 and have four children the youngest is 25 ,make sure if possible that your with her when she attends the hospital and speak with her consultant with your mum,I’m on 300 mil of spiron so a bit more ,but just stopped taking them as the side effects are horrendous for men,put it this way my wife says now you know how women feel with saw breasts ,but the best bit of advice I could give is to strip down her diet of salt,sugar and prossesed food and to cook from scratch with organic if possible,even though it’s expensive cutting chemicals and preservatives will help so much.if you want any advice get in touch.ps.we are all dying it’s just shitty that some will go a bit earlier
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