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23 November 2019 at 7:08 am #29569
Hi, My mother is 79, she was just diagnosed 3 months ago with liver cirrhosis, hepatitis C and liver tumor (hepatocellular carcinoma). She had a procedure called radioembolization on the tumor. And she is on medicine for hepatitis.
Can you share how have you managed the cirrhosis, I want to help her as much as I can.
She has fluid retention, do you get this often, is it a part of you, that you have to take diuretics? her albumin is low, we try to give proteins, but it still very low. Any ideas, how do you manage the condition.
I just need advices from people with cirrhosis to help manage this disease.
And do you think her liver function can get a little bit better after finishing epclusa.
The doctor told us that she won’t get better…If you go to restaurants, how can you order? since everything is bad for the condition…
I’m sad, frustrated, and need help!!!!
24 November 2019 at 2:04 pm #29572Hello ale2271,
If the hepatocellular carcinoma has been fully treated with radioembolisation then this should be cured. Your mother will continue to have a 3-5% annual risk of a new tumour so will require regular review but this is manageable.
Depending on your mother’s genotype the Epclusa has a 90-95% chance of delivering cure. This allows some degree of recovery of the liver. Not back to 100% but if you think about it, your mother is alive now with her current liver status, so any improvement will make her quality of life better than it is right now.
The basic approach to liver cirrhosis is to stop the damage. Hep C is one cause and this is being dealt with so we are heading in the right direction. Alcohol should be avoided at the moment as this adds to the problem.
A good diet with a variety of food is fine for cirrhosis and for health in general. Please don’t stress about this too much.
Often people with cirrhosis will be on medications like furosemide and spironolactone (diuretics), lactulose (normal a laxative but used to help remove toxins), and rifaximin – an antibiotic to prevent spontaneous bacterial peritonitis.
There is a brief outline of this at the Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/cirrhosis/diagnosis-treatment/drc-20351492
There is a much more detailed one here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017060/
YMMV
25 November 2019 at 3:52 am #29574Thanks son much, I’m depressed because I felt so sad the I asked the doctor if her symptoms (fluid retention, tiredness) could get better, and he told me NOOO. he was so rude!, and it was in front of my mom.
Dr James, some questions
1. reading about cirrhosis, I found some articles about stem cells, can this help a liver with cirrhosis?
2. any site with ideas of nutrition to help increase the albumin level?
3. The biopsy says that the cirrhosis is in early stage, how can she get the album low, and fluid retention? Do you think it can be that the liver is fighting the hepatitis and since the radioembolization was done 2 months ago, this can be a part of the reason?sorry if my english is not that well, I’m not from the States.
AGAIN, THANKS SO SO SO MUCH!!!!
26 November 2019 at 2:16 pm #29575Hello ale2271,
Sadly not all doctors have seen the dramatic improvements that occur in patients when treated for Hepatitis C with the new medications. The vast majority of patients who are treated show significant improvements.
With your questions:
1) No stem cells are unlikely to help. The liver has lots of liver stems cells in it already – given the chance repair will start from these stem cells. In fact, cirrhosis is just where the repair process driven by liver stem cells can not keep up with the damage so instead of new liver we get scar tissue.
2) Provided normal quantities of protein are eaten (meat, chicken, fish, milk cheese) ie not vegetarian there should be enough protein building blocks to make albumin. If albumin is low this is because liver is not working well at making albumin AND the albumin is diluted by extra fluid (which can be removed by diuretics mentioned earlier)
3) This is good news. Early-stage is expected to get much better with treatment. The reason is this:
a) Cirrhosis is 2 different things. First it is bands of fibrous tissue like a 3-dimensional net like mesh. Second, “trapped” in this mesh are swollen liver cells.
b) When we treat the cause of the liver problem, the swollen cells un-swell so despite the fact the fibrous mesh remains we see much better flow though the liver
c) Over time the fibrous mesh is know to regress = repairSo it is entirely possible that
1) Cancer will be cured, and if a new cancer happens we can cure it again
2) Liver function will improve
3) So, your mother will not die of this problem and may live for many more years before some other different problem crops up (we all must die one day of something)We should treat because then we know we have done our best. Sometimes our best is good enough, sometimes it is not, but if it is not, I think it is important to know we tried our best.
While stem cells are both unproven and (to me) a complete waste of time (because the liver contains lots of liver stem cells) liver transplants can be, and are used. With so many patients now being cured the demand for liver transplants is at a historic low so they are more available.
YMMV
26 November 2019 at 9:55 pm #29577THANK YOU SO SO SOOOOO MUCH!!!!!!!!
this chat has been a blessing for me!, I have not sleep, I’ve been so stressed that I will seek profesional help, it is so much that I’ve been dealing with. My mother, work etc, a 180 degree turn in my life. I feel so week not to be able to handle things by myself!
God bless you Dr James!!!, I would love to meet you someday!!!, and thank you in person!!!!
I attached the traduced biopsy report, If you could give it a look.thanks again!!!
Attachments:28 November 2019 at 2:34 am #29581Hello ale2271,
Thank you for your kind words. The liver biopsy is typical for early cirrhosis. Of course the cancer is not good but that has been treated so we don’t need to worry about that one, just the 3% per year chance of getting another. That we monitor with regular ultrasound.
There is plenty of cause for hope that you mother will be cured.
YMMV
10 December 2019 at 5:05 am #29600Hi, some more questions! sorry for asking so many questions!
1. any site with a list of high protein food?
2. my mother is around half of the treatment, when (if it happens) does the liver can start to heal and the cirrosis get better (if it does)
3. she is just on Epclusa, treatment for 24 months, as I read, when you have cirrosis, doctors prescribe another medicine at the same time… why ?
4. can lymphatic drainage massage help her liquid retention?
5. can Epclusa give extreme tiredness for all the treatment or can it just be her liver not working well?11 December 2019 at 4:06 am #296081. any site with a list of high protein food?
I’m sure there are heaps but it’s pretty simple.
- Any form of meat (beef, pork, goat, chicken, turkey, fish) is about 25% protein
- Full cream milk is about 1/3 1/3 1/3 protein, fat, carbohydrate with low fat varieties being ~ 50:50 protein/carb but only about 4% protein by volume. Milk products like cheese are much higher protein.
- Eggs are about 6g of protein per egg and you can boost the protein without adding extra fat by mixing 1 whole egg with 1-2 egg whites – still looks, smells and tastes like egg
- Beans, soy, and lentils are the highest protein vegetables with about 1/3 protein to 2/3 carbs
- Nuts are mostly 20-25% protein but also 50% fat so very energy dense
- Grains are about 10% protein and 70% carb
While there are all sorts of protein supplements they are usually modified skim milk or soy and heavily processed. I like food that looks pretty close to where/what it came from. We were eating stuff long before we had factories processing stuff so it is more natural.
2. my mother is around half of the treatment, when (if it happens) does the liver can start to heal and the cirrosis get better (if it does)
If your mother’s liver function has been tested you will almost certainly see improvements in the ALT and AST enzymes that get released when liver cells are damaged and die.
3. she is just on Epclusa, treatment for 24 months, as I read, when you have cirrosis, doctors prescribe another medicine at the same time… why ?
Cirrhosis goes from very mild to very bad. When it is mild no extra treatment is required. When it is bad we prescribe things like Diuretics (Furosemide and Spironolactone) to reduce fluid build up, Lactulose to remove toxins, Antibiotics (Rifamycin) to prevent spontaneous bacterial peritonitis.
4. can lymphatic drainage massage help her liquid retention?
No. Diuretics are probably the best option.
5. can Epclusa give extreme tiredness for all the treatment or can it just be her liver not working well?
Yes, some people do get tired on treatment. This is usually worst at the beginning when all the viral killing is going on. Most people have more energy, but some people remain tired until the pills finish.
With some people with cirrhosis we see that they get a little worse (at the start) before they start to get better. The CBC, CMP, AFP, and INR blood tests are useful in assessing what is going on.
Vitamin B12 may help with the tiredness and will certainly cause no harm. This can be as a single injection but the tablets in the pharmacy will work just fine.
YMMV
13 December 2019 at 2:16 am #29613thank you SO MUCH!!!!!!
I’m trying to make a good diet for her, so we can help get her albumin as high as possible! It is so difficult!!!!!16 December 2019 at 8:56 am #29617Hi, my mom just started to gain weight (fluid retention) and her creatinin is 1.93, her albumin is 1.73 and urea nitrogen is very high (51.07). she has ascitis and retention in arm and legs. doctor stoped torasemid 5 mg (In my country is called Britomar)
she is now with a piccolo’s catheter to give her Albumin.
I’m writing just because I need to tell it, I’m so sd, I don’t know how bad are the kidneys with these results…
I’m so sad!16 December 2019 at 4:28 pm #29618Hello ale2271,
I am sorry to hear about your mother.
While a creatinine of 1.93 is about 2x normal, and indicates 1/2 normal kidney function this does not require stopping diuretics (torasemid).
Urea nitrogen is not really a problem.
Some lactulose might help.
Albumin will help.
How many weeks is your mother into the treatment?
YMMV
16 December 2019 at 11:38 pm #2961912 weeks. She started on 17 september the Epclusa. And she is supposed to finish it around mid march. Can getting this bad can be because by Epclusa? she was not that bad at the beginning .
19 December 2019 at 3:47 am #29629she is also Hypothyroid, her 30.36 and the normal value is ulU/ml (0.35 – 4.94). taking 200 mg of Levothyroxine has not helped… can this be because of cirrosis?
19 December 2019 at 3:19 pm #29630Hello ale2271,
The hypothyroidism will not be helping. It causes fluid retention independently of liver disease.
Cirrhosis does not cause a problem with thyroxine.
Q: Is she taking the 200ug of thyroxine first thing in the morning and one full hour before food?
This is required of it will not be absorbed.
Levothyroxine is T4. Some patients (and this is rare) also require T3 (liothyronine)
https://www.medicinenet.com/what_distinguishes_the_use_-_cytomel_vs_synthroid/ask.htm
YMMV
20 December 2019 at 5:08 am #29632yes, she takes the thyroid medicine at least one hr before breakfast, and with no other medicines.
how dangerous could it be to have a live donor liver transplant?
I added her last tests, I hope you understand.
resultadosmama.pdf -
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