Hello everyone, I've joined this forum because I'd like your input on something. My husband was diagnosed with Cirrhosis about 6 years ago. His Cirrhosis was caused by hepatitis C, which has now been cured. He was initially diagnosed when we sought medical attention due to frequent swelling of his legs, and frequent bruises throughout his body, especially in his legs. There was a period of time, about 4 years ago where he started developing lumps/nodules throughout his body with bruises, which were very painful, he couldn't even walk for months at a time due to the nodules on his feet / ankles hurting so much. That seemed to improve once the hepatitis C was cured, the doctor told us it was an immune response to the hep c infection.
After he was treated for Hep C, he was once admitted into the hospital and received a couple of blood transfusions and he had to have fluid drained out of his belly, which only happened once, but he's still continued to have symptoms such as swelling in his legs, testicular swelling when he's standing for long periods of time, lack of appetite, low platelets, fatigue, very bad muscle cramps in legs and feet, fevers, frequent bouts of diarrhea, and lately he's been getting nose bleeds often. He has mild ascites, but I'm worried that it may be worse than doctors make it seem. Whenever I ask the Gastroenterologist how he's doing, she says that everything looks very steady, that his numbers have not worsened, and when I ask about the ascites, they always says that he does have some fluid in his belly but not enough to be drained and that the medication should help him with that, but I'm worried about him getting any type of infection. No doctor has ever told us anything about compensated or decompensated cirrhosis, so I don't know what stage he's in. He has had varices in his esophagus, but they've been treated, so he's never bled from those.
Again, I feel like the doctors are always so optimistic, yet he continues to have all these symptoms.
My questions are, based on the symptoms I've described, can anyone tell me if he's already in decompensated cirrhosis?
I'd also like to know, even if the Hep C was treated, with him having cirrhosis, does it mean, that cirrhosis in itself will continue to progress and will eventually need a transplant?
I'm not sure, because the times I've asked the Gastro about a transplant they always say he doesn't need it yet, but I'd like to know if there is a point in which he'll eventually need it, and shouldn't he already be in some type of waiting list??? I'm sure getting a transplant isn't something that comes quick.
Any bit of input will help, by the way, my husband is 43 years old.
Thank you all in advance!
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sidebyside555
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Sorry to hear about your hubbies situation. Just some questions on the monitoring your hubby is having - is he getting an ultrasound scan every 6 months? It is in the NICE guidelines that patients with cirrhosis be monitored by ultrasound scan (minimum) plus blood tests including Alpha Fetoprotein (AFP) every six months. This is particularly important with a patient having been treated for Hep C. A cirrhotic liver plus some of the newer Hep C treatments slightly elevate the risk of liver cancers so scanning needs to be regular to pick up any changes soon enough for treatment. These scans should also identify presence of ascites.
Is hubby on any meds to deal with fluid build up?
If you've not already read it the British Liver Trust website has an amazing page on cirrhosis plus one on living with liver disease which you both might find helpful. I know I found it a goldmine of information when my hubby was diagnosed with cirrhosis (April 2012). It covers symptoms and more.
Generally compensated/decompensated are based on:-
Stage 1 - No Varices / No Ascites (Compensated)
Stage 2 - Varices / No Ascites (Compensated)
Stage 3 - Ascites + / - Varices (Decompensated)
Stage 4 - Bleeding + / - Ascites (Decompensated).
Based on that any presence of ascites / oedema it looks like your hubby is slipping into the decompensated stage.
Do you know which would be your nearest liver transplant centre? It might be worth asking your hubbies gastroenterologist for a referral explain you just want to touch base and see a hepatologist (liver specialist). Perhaps put the request in writing.
My hubby was referred to Edinburgh and went under their care for a whole year before he was assessed for transplant - Edinburgh actually got him well enough to be delisted after 10 months so it is definitely beneficial to be under a centre of excellence.
Best wishes,
Katie
Hi sidebyside555,
welcome to the forum where you will be able to get advice and support from many with first hand experience of living with or caring for someone with liver disease.
However, we must remind all members that this is not a medical forum and nobody here is qualified to make a diagnosis.
If you need any questions answered about your husbands current health and progress of his liver disease, you should speak to your own doctor / consultant who will have intimate knowledge of his medical history and current circumstances.
As has already been suggested, please make full use of the British Liver Trust website, also the Trust have a dedicated helpline where you can speak to a qualified and experienced nurse.
Please don't be discouraged from continuing to use the forum as for many it is a valuable source of support, advice and community for those learning to live with liver disease.
Hi I'm new here too. I just wanted to say I can relate to your confusion, keep pushing for answers, knowledge is power! I've been cured of hep c but have cirrhosis and fatty liver, with mild swelling of the legs, mild ascites (only tiny amount visible on US) and varices but no bleeding. I was told variously that I was a. in stage 2 b. I had end stage liver disease and that c. I will likely need a transplant someday. I freaked out! Only to find out, cirrhosis IS technically "end stage liver disease" and that I was straddling stage 2/3, between compensated and decompensated, so that's as clear as mud. And then I found out about MELD scores, and how they slide up or down, it's all very tricky. Mine was at 8, and that's pretty low, the higher it goes, you Could go on the list, BUT only if you are a good candidate for the procedure. So that's why you need to see a specialist and get answers specific to your husband. Try to be optimistic, no one knows what tomorrow will bring, and worrying doesn't help anyway! The number one thing, NO alcohol. Eating clean, no sugar, low sodium is the next goal. This is one of my biggest struggles, I'm an emotional overeater with a sweet tooth. The idea also being to get as healthy as you can for possible surgery in the future. And of course, a clean diet has many other health benefits. Exercise is important too, as muscle wasting is an unfortunate side effect of cirrhosis. I have been encouraged to lift small weights sitting on a chair to begin with. If there's anything you can take from all of this, it's to not take your time on this earth or your (and/or your husband's) health for granted. Truly hope this helps. I will be thinking of both of you, side-by-side.
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