Author Topic: Stage 4 compensated liver, Hep c gone (Read 16924 times)

Savealife · « **on:** March 18, 2018, 11:12:47 pm »

Hello, my friend after having a bleedout from varicises, was treated with epclusa, his journey was a long and hard one but showed clear after treatment and will be going for 12 week followup nloodwork this week. He does not have any energy, weak but is not jaundiced and does not feel sick. He was discovered a year before to have stage 4 compensated liver failure, inread with varicisis it is considered decompensated but was told by the dr he does not have decompensated because he does not have ascitis. They basically have done nothing since last July but give him epclusa and treat him with warfin as he was covered in blood clots before he started treatment. They said as things come up , they will deal with it but from what I am reading, his liver will never get better, the chances of varicises is very high and his life expectancy is short lived, like one year. I am very saddened by this and would like some feedback, thank you so much

Lynn K · « **Reply #1 on:** March 19, 2018, 01:01:49 am »

Hi

I was diagnosed with liver cirrhosis (fibrosis 4) with liver biopsy back in January 2008. I was being followed closely since my diagnosis with hep c back in 1989. I was found, on my 3rd upper endoscopy in 4 years, to have grade 3 varicies in 2012. They were to the point they required banding to prevent a possible dangerous bleed.

Anyway I am still here my hep c was cured 3 years ago. I have been told there is about a 50/50 chance my liver may improve but even if it never improves it should not get any worse since I no longer have hep c. This is assuming I am kind to my liver and don’t drink and am careful with any medicines I take. Of course I remain at risk for HCC (liver cancer) but even that risk is greatly reduced with hep c cure.

A person with compensated liver disease can live for many years.

There is a scale called the MELD score it is based on several test results. The scale is from 6 to 40 it is used to determine placement on the liver transplant list. My MELD score is 7 where it has been for many years.

A patient needs a score of 15 to be on the liver transplant list assuming they are otherwise eligible and have completed the screening process. Most patients are transplanted with a MELD around 30 due to the availability of organs.

People spend long periods of time on the list waiting for available livers and they are dcompensated. I have no idea where you saw someone with compensated cirrhosis had one year to live. When I was initially diagnosed with early cirrhosis I read I had a 50% chance of being alive in 10 years or needing to be transplanted.

So far I am still doing fine.

I am wondering about him being prescribed a blood thinner as people with cirrhosis are in danger of having serious bleeding from varicies were are not supposed to take aspirin because if this risk. My platelet test is about 110 up from my pretreatment level of about 80 to 90 with minimum normal being 150. Platelets are important in helping to stop bleeding. Another test his liver doctor will be checking is called INR which relates to how long it takes to stop bleeding the INR is one of the tests used to determine MELD score.

Is he seeing a hepatologist associated with a liver transplant center? This kind of doctor and office is best equipped to follow patients like him and me with ESDL. Is he eligible for liver transplant if he should have a MELD score high enough? Determining factors would be his overall health and if he is currently drinking or using illegal drugs.

Does he know his MELD score? If he gets to the point he would need a liver transplant to survive is he willing to have the procedure?

Anyway sorry to hear about your friend. What did they do about his varicies? Did the band them or are they treating him with a beta blocker?

Best of luck to you both.

Savealife · « **Reply #2 on:** March 19, 2018, 02:25:52 am »

My friend bled out, he basically lost all of his blood, he went for banding after he was stabilized, 2 days later he was in severe pain, after I practically screamed emerg down, they saw he was in a fib, two cat scans later revealed blood clots in his legs, liver and several in his lungs. He was in intensive care for a month. They told me he was probably not going to live. They had trouble balancing his in, too high and he would bleed out, too low and the blood clots could move. I brought him home after a month. He stabilized started epclusa, cleared, three months now. He has his inr tested once a week. It must stay between 2 and 3. He still has more varicises to be banded. The doctor sad they will treat symptoms as they appear. Non smoker, drinker or use of drugs, prob contacted 1973.

Lynn K · « **Reply #3 on:** March 19, 2018, 03:53:52 am »

If he can get his blood stabilized that will help a lot. My INR is 1.1 I think 1.0 is normal. Do you know his MELD score? Or his Child Pugh score? The child Pugh was used for transplant listing before but now they use the MELD. The Child pugh can me used to estimate 90 day mortality. They are three levels Child A or B or C. I am a child A which is the better health score.

Lynn K · « **Reply #4 on:** March 19, 2018, 03:57:08 am »

MELD score calculator

https://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-score-90-day-mortality-rate-alcoholic-hepatitis

Child Pugh calculator

https://www.mdcalc.com/child-pugh-score-cirrhosis-mortality

Savealife · « **Reply #5 on:** March 19, 2018, 04:50:25 am »

18 pts. 3-4% mortality rate over three months. When I put in numbers, he goes for a three month update bloodwork Tuesday. He had an ultrasound two weeks ago, we have heard nothing, out internist was to contact the hepatoligist three months ago to have the rest of the varicises fixed but we have heard nothing. We live in Canada in a small town. He cannot have his inr lower than two, risk of blood clots . It is all very confusing.

Lynn K · « **Reply #6 on:** March 20, 2018, 01:58:56 pm »

Is he under the care of a transplant center at least indirectly through his local doctor? As I understand it with a MELD of 18 he is eligible for transplant. Has he been evaluated for transplant eligibility?

Does he want to have a transplant if he goes into liver failure?

If you haven’t heard back about getting the varicies CALL them this is a time to be proactive not waiting for them to ge back to you. A varicieal bleed can be life threatening.

Savealife · « **Reply #7 on:** March 21, 2018, 10:33:05 pm »

Hi Lynn K, Was waiting for 3 month blood work, although the viral load takes 10 days. I had to recalculate due to the fact that his blood work is in umo/L shows 90 day mortality rate .o6o. He is not under the care of anyone, he was under the care of a specialist but our local internist oversaw him while he did meds. He has being signed off on her and noone is monitoring him. Just his INR. His blood work was so good three months ago and it certainly has changed since then he does have more banding to be done and have waiting for a call for going on 4 months. it is quite frustrating but maybe it is standard.

Savealife · « **Reply #8 on:** March 21, 2018, 10:37:30 pm »

found a canadian one, it is 19 pts 6% mortality

Lynn K · « **Reply #9 on:** March 21, 2018, 11:04:18 pm »

With that high of a MELD he needs to be followed by a liver transplant center and a hepatologist associated with that center. He probably should be having blood testing and ultrasound every 3 months. I am tested every 6 months with a MELD of 7.

He should be evaluated for liver transplant if he is willing to undergo the procedure.

Savealife · « **Reply #10 on:** March 23, 2018, 03:02:52 am »

Thank you for your reply, he had bloodwork done in December when he was finished treatment, everything looked so good, he had an ultrasound three weeks ago, we have heard nothing. This was his three month test, done two days ago so we shall see if anything is done. He has a hepatoligist who does liver transplants but we were told by his internist here that they are just going to treat things as they come up. They are probably swamped right now as B.C. as of this month has allowed anyone with hep c to free treatment.

Lynn K · « **Reply #11 on:** March 23, 2018, 04:42:56 pm »

That is the normal process for anyone with ESLD (end stage liver disease) they monitor for issues and treat as they arise.

Is he willing to undergo a liver transplant if it becomes necessary?

Has his doctor discussed getting him on the transplant list or if he is eligible? You may need to ask.

Getting in the transplant list is a long process. They will evaluate his overall health and his social situation to ensure he has adequate support after his procedure. There may also be a discussion with a psychologist and/or a social worker to determine his readiness as well as a dietician. This is not something you would want to be undertaking when he is very ill and in need of an immediate transplant. At least that is not how it is done in the US.

Ask his doctor about if he should need a transplant in the future what is the process.

Savealife · « **Reply #12 on:** April 29, 2018, 09:51:01 pm »

Hello well the beginning of March my friend went for an ultrasound, and we heard nothing, March 17 he had the viral test, we waited and waited for the doctor to call and then finally on April 18th I phoned and said he did. Ot have paperwork for six month check. I was told he was clear with his 3 month check but needed to come into see the doctor. Apparently she had not contacted the specialist who does banding which was suppose to be done in January. She then went on to say he has swollen lymph nodes by or on his pancreas and she wants him to go for a cat scan. I was sort of in shock, the ultra sound was done 7 weeks prior and they are telling us now. Coukd anyone explain what this means. Cheers.

Salal · « **Reply #13 on:** April 30, 2018, 02:04:30 pm »

Enlarged lymph nodes usually means metastatic cancer. I suspect the CAT scan is being done to look into this. I share your outrage that it took the doctor so long to report to you, but it's not unusual here in BC.

Lynn K · « **Reply #14 on:** April 30, 2018, 02:20:37 pm »

One thing many with serious illness have experienced is the need to be proactive with our healthcare. If a test result was supposed to be back within a week and you haven’t heard call the doctors office. Sometimes we are forgotten with all the other patients your doctor is treating. Don’t allow them to forget you. Become your own health care advocate.

Sending my best wishes that the cause of the enlarged lymph nodes is something easily treated.

Savealife · « **Reply #15 on:** April 30, 2018, 03:54:56 pm »

Salad how coukd enlarged lymph nodes mean he has mestatic cancer, and where would it have come from. Let’s see how long it takes to get a cat scan went in on Wednesday today is Monday.

Lynn K · « **Reply #16 on:** April 30, 2018, 05:37:51 pm »

I saw some of that also. Hopefully it is something else. But I think they are more talking about primary cancer not metastasized. But the quote below only says “MAY indicate” so try to stay optimistic. Hopefully it is a bile duct obstruction.

“A high quality CT Scan (called a spiral or helical CT) can detect a tumor in the pancreas, enlarged lymph nodes (which may indicate tumor involvement), tumors in the liver, or obstructions of the bile duct. It is the test most commonly used to diagnose this cancer in the United States.”

https://www.oncolink.org/cancers/gastrointestinal/pancreatic-cancer/all-about-pancreatic-cancer

Salal · « **Reply #17 on:** April 30, 2018, 08:58:03 pm »

Quote from: Savealife on April 30, 2018, 03:54:56 pm

Salad how coukd enlarged lymph nodes mean he has mestatic cancer, and where would it have come from. Let’s see how long it takes to get a cat scan went in on Wednesday today is Monday.

Yes, you need more information. Hopefully the CT scan has been fast-tracked.

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Author Topic: Stage 4 compensated liver, Hep c gone (Read 16924 times)