Stage 4 newby

[adj61]

I am new and stage 4 uncompensated. I was admitted to hospital last December and nearly checked out. Currently waiting to get on a transplant list. My symptoms are being treated since December and I feel and look better, but still very ill.

I've had all the symptoms lately of needing another perocentisis, fatigue, belly bloating, discomfort at diaphram and rattley breathing.  The only symptom I didn't have was shortness of breath.  I went in last week to have the pero and found there is no fluid in my belly.  So now I'm at a loss.  Don't know what would cause all these symptoms and I don't even know which doc to talk to about it.  

I also saw a rheumatologist last week because the joint pain has been getting really bad.  Mostly in my hands and shoulders and now getting worse in my elbows.  The shoulder pain has been waking me up every night.  She called today and said test results say it is NOT rheumatoid arthritis.  Finally some good news!  I think she said it wasn't from the psoriasis either.  She spoke to my liver doc and I see her tomorrow to go over results and what kinds of pain relievers I can take that won't further damage my liver.

Any input is greatly appreciated.

[transcendentalbeing]

I recommend you try water fasting and some mineral solutions

[gauf]

Wow, that is fantastic!  A viable treatment without interferon? How wonderful that would be to treat without feeling like one is dying everyday for months. I have been out of the loop so not familiar with GS-7977.  

Since my own SVR, I am doing great. I live normally and do not worry about diet or anything else. I still take a wide range of supplements and believe they help as I don't even think about my condition, ( I must be well compensated for a stage 4), and feel most fortunate to have beat the HCV before I hit the uncompensated mark.

Got to get you and my little sister here living a better life. New ideas and treatments seem to happen so fast so hope is always alive. These boards were really a tremendous gift that directly lead me to a cure.

I am impressed how well you are doing for years now with such an advanced condition. You are a great inspiration!

[HectorSF]

Hey stranger!

Still here waiting for a liver transplant in the next 5 months. Trying to keep my liver cancer at bay.

By the way...I am in a trial with GS-7977 + ribavirin (all oral, no interferon treatment) and undetectable since week 2!!! 4.3 log drop. So I am hoping I will not reinfect my donor liver with hep C. Awesome! It is a phase II trial. There are only 50 patients in the world in this trial. Super lucky. Oh did I mention I am on week 5, no side effects? Crazy huh!

Good to hear from you!
Hector

[gauf]

Good to see Hector still around and helping folks out. A great source of comfort and info.

A little dark chocolate to sweeten up your day sis!

[HectorSF]

Advice for ‘ no added salt diet ’ (1.5 – 2.0 g/day)

Omit -
Anything containing baking powder or baking soda (contains sodium bicarbonate): pastry, biscuits, crackers, cakes, self - raising fl our
and ordinary bread (see restriction below)
All commercially prepared foods (unless designated low salt — check packet)
Dry breakfast cereals except Shredded Wheat, Puffed Wheat or Sugar Puffs
Tinned/ bottled savouries: pickles, olives, chutney, salad cream, bottled sauces
Tinned meats/ fi sh: ham, bacon, corned beef, tongue, oyster, shellfi sh
Meat and fi sh pastes; meat and yeast extracts
Tinned/ bottled vegetables, soups, tomato juice
Sausages
Cheese, ice - cream
Candy, pastilles, milk chocolate
Salted nuts, potato crisps, savoury snacks
Drinks: especially Lucozade, soda water, mineral waters according to sodium content (essential to check sodium content of mineral
waters, varies from 5 to 1000 mg/L)

Restrict -
Milk (300 mL = half pint/day)
Bread (two slices/day)

Free use -
Fresh and home - cooked fruit and vegetables of all kinds
Meat/poultry/fi sh (100 g/day) and one egg; egg may be used to substitute 50 g meat (2 oz)
Unsalted butter or margarine, cooking oils, double cream
Boiled rice, pasta (without salt), semolina
Seasonings help make restricted salt meal more palatable: include lemon juice, onion, garlic, pepper, sage, parsley, thyme,
marjoram, bay leaves
Fresh fruit juice, coffee, tea
Mineral water (check sodium content)
Marmalade, jam
Dark chocolate, boiled sweets, peppermints, chewing gum
Salt substitutes (not potassium chloride)
Salt - free bread, crispbread, crackers or matzos

H

[HectorSF]

Adrienne,

"Gabapentin is for stabbing pain in lower legs & feet (due to swelling?) "

Gabapentin capsules, tablets, and oral solution are also used to relieve the pain of postherpetic neuralgia (PHN; the burning, stabbing pain or aches that may last for months or years after an attack of shingles). Gabapentin extended-release tablets (Horizant) are used to treat restless legs syndrome (RLS; a condition that causes discomfort in the legs and a strong urge to move the legs, especially at night and when sitting or lying down). Gabapentin is in a class of medications called anticonvulsants. Gabapentin treats seizures by decreasing abnormal excitement in the brain. Gabapentin relieves the pain of PHN by changing the way the body senses pain.

Swelling (called edema) does not usually cause pain in lower legs and feet unless your lower legs are extremely swollen. Very advanced cirrhosis can cause ankles and lower legs to be the size of your thighs. Obvious the treatment is to reduce the swelling by treating the underlying liver disease if possible. If you have no edema and ascites now, because you are managing your fluid buildup, then you should have no pain from edema and ascites.
It appears that you have multiple health issues, not just very advanced liver disease.

Ascites Overview:

• Ascites is the most common decompensating event in cirrhosis.
• Its pathophysiology is mostly explained by splanchnic and peripheral vasodilatation that lead to a decrease in effective blood volume.
• The natural history of ascites results from a progressively more deranged circulatory status; with ascites that initially responds to diuretics, then becoming refractory to diuretics, at which time the patient may develop hyponatraemia and, finally, hepatorenal syndrome.
• Most patients respond to diuretics. Patients who no longer respond should be treated with repeated large -volume paracenteses. Transjugular intrahepatic portosystemic shunt (TIPS) should be considered in those
requiring frequent paracenteses. Fluid restriction is recommended
in patients with hyponatraemia. Vasoconstrictors may reverse hepatorenal syndrome and are useful as a bridge to liver transplantation.
• Ascites per se is not lethal unless it becomes infected (spontaneous bacterial peritonitis). Infection often precipitates the hepatorenal syndrome leading to death. Antibiotic prophylaxis is indicated for secondary prevention of spontaneous bacterial peritonitis and in high - risk patients.

Symptoms:
The most frequent symptoms are increased abdominal
girth (the patient notices tightness of the belt or garments
around the waist) and recent weight gain. As fl uid continues to accumulate, it leads to elevation of the
diaphragm that may cause shortness of breath . Fluid accumulation
may also be associated with a feeling of satiety
and generalized abdominal pain . The rapid onset of symptoms
in a matter of weeks in ascites helps to distinguish
it from obesity, which develops over a period of months
to years.

Examination
The presence of ascites in patients with cirrhosis denotes
a decompensated, more advanced stage of cirrhosis,
therefore stigmata of cirrhosis are usually present
(spider angiomata, palmar erythema, muscle wasting).
There may also be jaundice and signs of portal hypertension,
such as splenomegaly (enlarged spleen) and abdominal wall collateral veins.
Inferior vena caval collaterals result from a secondary, functional block of the inferior vena cava due to pressure of the peritoneal fl uid. They commonly run from the groin to the costal margin or flanks and disappear
when the ascites is controlled and intra - abdominal pressure is reduced.

"I take either the Trama-Dol HCL OR Acetaminophon, 1000 mg/day as needed for pain."
That is fine.

"The gall bladder will be removed from the transplanted liver."
That is true. All liver transplant patients have no gallbladder after transplant.

"It sounds like, except for the red meat, I've been doing every right.  And quite frankly nutritionist may have told me about the red meat but due to the encephalopathy in the early part of the year I very possibly missed ot."

All patients with hepatic encephalopathy should either bring someone with them to appointments of if they are able write down all answers the doctor has to your questions. We will encephalopathy many times can remember anything that someone said 3 minutes later. Every thing important should be written down. Everything you see you doctor you should have a list of questions to ask from your previous appointment. If you don't write then down you will never remember all of your questions. Even "normal" thinking people forget some of their questions in the "heat" on the moment.

Cheers!
Hector

[adj61]

Gabapentin is for stabbing pain in lower legs & feet (due to swelling?)

I take either the Trama-Dol HCL OR Acetaminophon, 1000 mg/day as needed for pain.

I have been told that removing my gall bladder is not an option.  The gall bladder will be removed from the transplanted liver.

Rheumatologist has prescribed hydroxychloroquine 200 mg/2xday, shot of cortisone in only 1 shoulder to determine success and PT only after consulting with my Liver team for course of treatment for joint pain.

It sounds like, except for the red meat, I've been doing every right.  And quite frankly nutritionist may have told me about the red meat but due to the encephalopathy in the early part of the year I very possibly missed ot.

Thanks  Adrienne

[HectorSF]

Lactulose 1.5 oz AM       .75 oz Midday
Xifaxim 550 mg tab 2xday
Furosemide 40 mg 1xday
Amiloride 10 mg 1xday

These drugs are for complications of cirrhosis.

**Check with your hepatologist first before changing diet or adding or changing any medicines.**

You are already on a low sodium diet in addition to taking diuretics to prevent fluid buildup. Furosemide and Amiloride.

Diet changes for cirrhotics:
Every transplant center should have a dietitians or nutritionist. You should see them and get a cirrhosis friendly diet to follow.

Since you are taking Lactulose and Xifaxan that means you are either experiencing or to prevent hepatic encephalopathy. Therefore you should not be eating any red meat while creates lots of toxins being digested. Get some protein for vegetable protein too.
-------------------------------------------------------------------------------------------------
Lifestyle changes cannot cure cirrhosis, but they can help to delay or stop progression of the disease, reduce the severity of symptoms, and help prevent complications.

General Guidelines for Managing Cirrhosis
• Avoid drinking alcohol.
• Eat a balanced diet.
o Avoid raw seafood - bacteria in some seafood can be fatal to cirrhotics.
o High calorie, high protein diets are used to help the liver regenerate in the early stages of cirrhosis.
o Take any vitamin or mineral supplements recommended by your health care provider.
o A low-salt diet may be needed to reduce fluid retention.
• Get your doctor’s approval for all medications.
• Get vaccines for flu, pneumonia, and hepatitis. Prevent for harm to our liver.
• Put your feet up to reduce swelling.

In some cases, a salt-restricted diet may be necessary. Salt (sodium) contributes to fluid retention, and restricting salt can help alleviate fluid-related swelling in the abdomen and legs.

Get Approval for All Medications
Do not take any medication, including over-the-counter drugs, without your doctor’s approval.
The liver is responsible for metabolizing medications, and when your liver is damaged because of cirrhosis, drug metabolism may be altered. Dangerously high levels of medicines can remain in your blood and interfere with drugs you may be taking to treat cirrhosis. Always get your doctor’s approval before taking any medication.

Surgery is said to be safe in the setting of mild chronic hepatitis. Its risk in patients with severe chronic hepatitis is unknown. Patients with well-compensated cirrhosis have an increased but acceptable risk of morbidity and mortality.

A study of nonshunt abdominal surgeries demonstrated a 10% mortality rate for patients with Child class A cirrhosis as opposed to a 30% mortality rate for patients with Child class B cirrhosis and a 75% mortality rate for patients with Child class C cirrhosis.
Thus, unless absolutely necessary, surgery should be avoided in the patient with cirrhosis. Although cholecystectomy was among the riskier surgeries noted, several recent reports have described the successful performance of laparoscopic cholecystectomy in patients with Child class A and B cirrhosis.

-----------------------------------------------------------------------------------------------
These drugs are not for liver disease.

Gabapentin 200 mg 2xday  - used to help control certain types of seizures in people who have epilepsy also used to relieve the pain of postherpetic neuralgia (PHN; the burning, stabbing pain or aches that may last for months or years after an attack of shingles).

Other uses for this medicine:
Gabapentin is also sometimes used to relieve the pain of diabetic neuropathy (numbness or tingling due to nerve damage in people who have diabetes), and to treat and prevent hot flashes (sudden strong feelings of heat and sweating) in women who are being treated for breast cancer or who have experienced menopause (''change of life'', the end of monthly menstrual periods). Talk to your doctor about the risks of using this medication for your condition.

Trama-Dol HCL is a centrally acting opioid pain killer.
NOTE: Tramadol in fixed combination with acetaminophen not recommended in patients with hepatic impairment. You should not take more than 2,000 mg of acetaminophen per day and should not take it continuously.

Maybe for symptoms of liver disease?

Prilosec 41 mg 1xday can block frequent heartburn symptoms before they strike for a full 24 hours of heartburn relief. Heartburn is more common in cirrhotics.

Simethicone is used to treat the symptoms of gas such as uncomfortable or painful pressure, fullness, and bloating. From Lactulose?

Good luck.
Hector

[adj61]

When my son got serious about wrestling I discontinued using all processed foods and haven't for a few years so that hasn't been an issue.  I use sodium free baking powder/soda I get online.  I rarely exceed the 2000mg day and quite often my daily intake is arount 1,000.  The 32 oz/day of fluids is a significant challenge and I can rarely keep within that number.

I only learned about red meat about 2 weeks ago on this site.  No doctors nor the nutritionist suggested omiting or reducing red meat.  I'll certainly be trying that.

Thanks

[adj61]

sorry, additionally, rheumatologist added hydroxychloriquine to help with joint inflamation.

[adj61]

Hi Hector.  My brother was/is a member of this site and input this post for my benefit.  To clarify, I am currently on the liver transplant list.  I was added last February when my MELD was around 20.  I have been added for kidney transplant since about April.  I had a TIPS done in late May and was prescribed diuretics in late June.  Due to diet, exercise (as Ican) my last MELD has declined to 10 and doc suggested they may actually remove me from the kidney transplant list.

I don't know what you mean by  "Are you on a diet to prevent ascites?"  Other than sodium (2000 mg/day) and fluid (32oz/day) restrictions I've not been told about diet changes be either doctors or nutritionist other than reduced fatty food for gall bladder attacks.  I havn't had an attack in months.

Current meds are:

Lactulose 1.5 oz AM       .75 oz Midday
Xifaxim 550 mg tab 2xday
Furosemide 40 mg 1xday
Amiloride 10 mg 1xday
Gabapentin   200 mg 2xday
Simethicone 250 mg 2xday                                         80 mg chewable every 6 hrs as needed
Prilosec 41 mg 1xday
Zinc Sulfate 50 mg (220 mg zinc sulfate heptahydrate) 2xday
Magnesium 400 mg 2xday
Multi vitamin 1xday
Oscal + D 500 mg 2xday      Vitamin D3   200IU    Calcium    500mg
Tylenol 3 regular strength 1 x day as needed
Trama-Dol HCL 50 mg 2 x day as needed

[orphanedhawk]

Hi,
I was able to keep my ascites under control for 3 years with diet and the occasional use of diuretics. You need to cut all salt out of your diet.
Read labels, avoid anything that had sodium in it. Don't eat processed meats and cheese is high in salts too.

The other dietary thing you can do to  help yourself is stop eating red meat. It can elevate ammonia levels which can be very problematic with those with cirrhosis.
And do take a multivitamin without iron.

Good luck~

[HectorSF]

I am sorry to hear that you are decompensated and need a transplant.

You need to get listed soon so you have a hepatologist to help you learn about cirrhosis and transplant and treat your symptoms.
Are you on a diet to prevent ascites? You should be our ascites will continue to reoccur. Are you taking diuretics?
It shouldn't take 6 months to get listed. As soon as you developed ascites you should have been referred to a transplant center.

Ascites is usually the first complication of decompensated cirrhosis. Of course fatigue too.
Shortness of breath is only a side effect of tense ascites when the abdomen is so full of fluid it is hard to breathe.

Joint pain is something else entirely and is not a symptom of liver disease.

You can take up to 2,000 mg per day of Tylenol. It is the only pain reliever that patients with cirrhosis should use. Other drugs such as NSAIDS can cause very serious problem such as internal bleeding and kidney failure.

Good luck to you!
Hector