ammonia is 25
no signs of Hepatic Encephalopathy other that i like to go to bed late and sometimes get irritated over nothing.
Thank you for responding to my question.
MELD used to be 10 2 years ago, i really don't know what's now.Thank you once more!
Is your doctor a hepatologist?
You obviously have Cirrhosis and your doctor has you on medications to prevent or manage Hepatic Encephalopathy (HE). If you are being seen by a gastroenterologist, I strongly recommend that you ask for a referral to a hepatologist, usually found in a transplant center affiliated with a large university based medical center. Being seen in a transplant center doesn't mean that you need a transplant at this time, but it is in this setting that you can be seen by a hepatologist, a liver specialist.
Since you have Cirrhosis, it is important to be seen every 3-6 months, so that a hepatologist can monitor your labs, determine your liver function, and screen for liver cancer. A hepatologist is the best type of doctor to manage your care and keep you informed of things like your MELD score and your options.
My husband has Cirrhosis, and he sees his hepatologist every 6 months for labs and imaging to screen for liver cancer. She keeps him appraised regularly of his options and manages all of his liver care.
Do you know the cause of your Cirrhosis? If so, is it something that can be treated so that it stops damaging your liver?
Are you on a liver friendly diet (no iron supplements, avoid NSAIDS and medications that harm the liver, eat fresh fruits and veggies-preferably organic-, limit red meat, limit sodium)?
Is you weight in an ideal range?
All of these things can help your liver function better. If your Cirrhosis is caused by something that can be cured, do it. If your Cirrhosis is progressing, do what you can to stop the progression. In the meantime, you need a hepatologist to manage your symptoms and care to keep your liver functioning as well as possible and to develop a long term treatment plan.
Keep posting. Let us know more.
Oh, I looked on your profile and see that you have Hep C. My husband has Hep C as well, and that is the cause of his Cirrhosis. You definitely need to treat your Hep C if you can. New medications were approved last month, and if you haven't treated before, and if you are Genotype 1, you may be able to treat now, for a shorter time period than before. Again, a hepatologist can guide and direct both your liver care and your Hep C treatment better than a gastroenterologist.
Which Vancouver are you in? (Washington or British Columbia?). We live in Seattle.
Hi and thank you for responding.
I just got a letter for a liver transplant assessment, not sure yet if that is a good thing for me or not, I live in Vancouver BC.
My weight is 108 lbs, but I'm only 5 ft tall, i do have regular check ups very 3 months and have blood monitored once a week, my last problem is diarrhea and otherwise oedema is under control and i have no varices, I have been living for 2 months in Victoria and here I'm seen by gastroenterologist who sends all my tests to Vancouver, how is your husband doing and how does he cope?
You are very kind and I'm grateful, my diet is Japanese food 60%, don't eat meat, eat a lot of prawns. consume a lot of citrus sometimes 6 lemons or more a day and cranberry juice, is your husband taking diuretics?
Thank you Advocate, may you prosper and be happy with your husband!
forgive all the typos I'm Portuguese.
Both of these medications are diuretics so this is probably why your edema is under control. My husband was diagnosed with Hep C in Dec 2010. He literally has a drug store of leftover medicines he has been prescribed over the last three years. Both of these medicines were prescribed to him when he had edema. He no longer has edema since he has a new liver though his new liver is now damaged as a result of recurrent Hep C and billary tree damage. So I am careful to check his legs and ankles for signs of it.
Your question is whether they have overprescribed the medicine for you or not. Given you height and weight, it may be overkill. I have learned that you have to very careful with medicines that are prescribed. Not all doctors are created equal. Please see a hepatologist as Advocate has advised.
A short anecdote to make my point. My husband was prescribed neomycin to help him with his HE in the first year he was diagnosed. He had visited an ER and the doctor in charge prescribed 2000 mg of it a day. WE were totally ignorant about medicines and HecC complications. Well withing 3 days he was back at the hospital with KIDNEY FAILURE! Luckily, after almost a week and under the care of a top kidney specialist, his kidneys returned to almost normal. That experience was the beginning of my education on Hep C, Cirrhosis, complications, medicines, etc. I later checked the insert that comes with neomycin and read that side effects include kidney problems. At such a high dosage its no wonder this happened to him.
Everyone needs to be a participant in managing their healthcare. If they are too sick to do it then it is important to have a caregiver who supports you, if possible.
I wish you the best going forward. Get assessed for transplant is my advice.
The more info you have the better.
Nan has given you some great advise.
I can't really offer much insight about the dosages of lasix and spironolactone since my husband's liver is well compensated and he hasn't needed to take either of these medications. 108 and 5' tall is very small, so your doctor should definitely take that into consideration. Nan knows a lot more about advanced liver disease and decompensated liver than I do, so I would definitely take her advice into consideration. I do know that the balance between fluid intake/output, diuretics, and medications is all very critical to keeping your liver functioning as well as possible.
I can't really offer much information regarding liver care in Canada either, although you are very close to where we leave, in Seattle.
I strongly think that given that you have Cirrhosis and your liver has begun to decompensate as indicated by your medications and your previous MELD, you should be seen by a hepatologist rather than a gastroenterologist. Only a hepatologist has the background and expertise to really guide your treatment and keep your symptoms managed.
Is there a research based/university based medical center in Vancouver? That would be where you would find a hepatologist, associated with a transplant center.
How is my husband coping? He is coping well. He works full time and his hepatologist (at the University of Washington Medical Center) sees him every 3-6 months for labwork and imaging to screen for liver cancer. The cause of his Cirrhosis is Hep C, and he has tried unsuccessfully to treat his Hep C three times in the past 7 years. We are hopeful for a new opportunity for him to try to treat it within the next year. In the meantime, he tries to live his life as normally as possible, and take care of his liver.
Keep posting and let us know how you're doing.
Ask your gastroenterologist what your current MELD score is.
One can calculate your own MELD score as well just by plugging in the numbers into this calculator:
I often get impatient waiting till my next appointment to know if MELD has changed
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