Rocko Follow Up Post to Cirrhosis Diagnosis

[ROCKO2231]

Good day community. Just a follow up to my first post of cirrhosis diagnosis 3 weeks ago. Its been a rough go, specifically symptom wise which is also affecting me mentally. Some of the symptoms i was dealing with have become chronic in the last few weeks and intensified. Swollen neck on both sides, severe headache, metallic taste in my mouth, nauseous (haven't eaten in 3 days) as ive completely lost my appetite. I was pretty much regurgitating everything when i was able to eat. Mid back pain on the right side, an annoying feeling like something is stuck in my throat, completely exhausted. Sleep does nothing. Waking up a few times a night with severe kidney and bladder pain, smelly and foggy urine and this feeling of whole body malaise. I also have difficulty breathing, like there's pressure on my lungs. I've lost a fair amount of weight the last few weeks, but my stomach is obviously still bloated.

What is hurting me the most though is seeing the look on my wife's face when she's looking at me suffer...that helpless feeling she's going through. Breaks my heart.

I have an appointment tomorrow for an ultrasound with the private clinic that diagnosed my cirrhosis. I am concerned that i am probably dealing with something a lot more serious than what my tests are showing and from what i can see, ultrasound may not detect liver cancer if there's a fair amount of fat in the liver. This clinic doesn't offer liver biopsy or CT scans. My GP was finally able to get me on a list to see gastroenterologist but there's a 2 year waiting list.

Sorry for my rant, i know many of you are in just as bad if not worse situation than mine, just having a hard time dealing with this and needed to vent. Besides talking to my wife, i feel this is the only place i can let my feelings known. Tomorrow will hopefully be a better day.

Rocko

[Horsemum101]

That's why we are here, to listen to each other, offer support and hopefully a few laughs 🙂

[Hidden]

With these worsening symptoms, I would encourage you to seek further medical assessment.

Please ensure you list all your symptoms individually, it is also important not to assume that they are all linked to your current diagnosis .

Take care,

Trust9

[pushthrough]

Sorry you're going through this Rocko. I don't know your history or anything but I was just diagnosed myself the day before my 39th birthday this past Monday. Mine is compensated and I pray it stays that way. However prior to that I had similiar symptoms with the exception of ascites. My urine was extremely dark and smelled terrible. Anyhow what you are describing pains me to hear. You can get through this though. You just have to keep fighting as hard as you can. I'm wishing you the best Rocko!

[Billie246]

Always keep talking, gather as much support as you can and ask about anything you are unsure about. Maybe if your wife joins on here then she can also ask and it will help her understand more rather than frightening herself with Google. I wish you all the very best xxx

[kensimmons]

How can there be a two year wait list to see a gastro doctor? Two years?

[Onesmallstep1969]

ROCKO2231, So sorry that you're going through this. Your body is being wracked by cirrhosis at the moment. You probably know this already but the cirrhosis has lead to portal hypertension and low albumin, which together have caused the ascites. Unless you can reduce the amount of cirrhosis, the only option is to somehow reduce the amount fluid, hence the drainings. But you may also try a few other things to support your liver. Reduce the amount of salt you consume. This will reduce fluid retention. So will eating enough greens.

At this point, you're just trying to help your body to not waste away. Your body needs the nutrients. But your liver, which usually is the main factory for extracting nutrients and processing waste, can't do its job right now, so everything is backed up. The nutrients can't make it through to the liver because the portal pipeline is clogged with cirrhosis. Not enough nutrients are getting through. Hence, you get weaker and weaker.

Since it's hard for you to keep down food, try blending a green smoothie of spinach leaves, banana and your favorite fruit. I get my smoothie recipes from several sites, (collectivewizdom.com and from forksoverknives.com). Just sip a little like a baby at first.

If you can hold it down, drink a cup of coffee. Make it delicious, add almond milk or oat milk. Sip a little if you can. As you feel better, work your way up to 3 cups of paper-filtered (American style) coffee each and every day.

For solid food, eat what you can hold down. Try salmon, chicken, whatever you can hold down that is rich in protein. When I ate meat, I found good recipes on delish.com.

Hang in there. Just hang in there. This too shall pass.

[Zukosmile07 in reply to Onesmallstep1969]

Alright one step do you have compensated liver disease boarder line decompensated? I was unlucky you see, my liver had gone past the point of no return. (Exact diagnosis is what you need Rocko) eating the greens and just healthy food deteriorated my body. I remember one day my body was screaming out something rich and meaty (do you know the feeling when your body tells you that you need fresh orange juice) now. I went to the local takeaway (not advising this, unless you speak to your dietitian first) I ordered crispy shredded beef and beef in black bean sauce. I ate that and I felt strong, less fatigued and 10 times better throughout. The dietitian actually had a little bit of a go at me and said I was going too far with healthy food. She organised little but often meals (small so you can keep them down) protein in everyone, nourishment drinks in-between meals and snacks on biscuits and sweets, most of all a decent snack before bed to keep your liver topped up over night (that is usually when it steals your muscle mass😒)This is why you need an exact diagnosis because with compensated liver disease the diet is like a weight loss diet, just healthy food and no sugar, little salt. Plain meals with no gravy or sauces.🙄 Supplement drinks with not too much sugar but plenty of protein. Coffee is good for the liver but has to be fresh.

When I first got the Costa app....😏

Everyone is different but we all have something in common.... Dealing with that nasty, horrible disease.

Good luck Danny x

[Foxdud]

Good luck Rocko hope your having better days

[Zukosmile07]

Wow Rocko this is the first I'm reading of this... You and I had almost the same symptoms in common. I am telling you now that you must eat, whether it be a takeaway which you know you shouldn't.My (brilliant) dietitian explained that your liver will eat your own body from within to keep going and regenerating. If you don't fancy anything... Even something unhealthy to eat is better than nothing. (Check with yours first)

When I was really bad I looked horrendous a massive pregnant 🤰 looking tummy with skinny arms.

I'm sure if I didn't keep stoking the liver liver like a steam engine I wouldn't of made it..😢.

In the end I had reached the worst part of decompensated cirrhosis and the best diet for me was ice-cream, full fat milk/cream, Sweet's/chocolate/biscuits, eggs/sausages, cheese (cheaper stuff, less salt), creamy pasta dishes, shepherds pie (thoroughly cooked lamb/chicken. All I had to do was keep salt intake under 5grams per day.

I'm going on....... You need to ask anything Rocko feel free...

Danny x

PS it's only been just over a month since the transplant and I feel great (you will eventually).

I look forward to waking up and there are NO SYMPTOMS, nothing at all aching, nothing...😏😃😃