Cirrhosis of the Liver Community
New diagnosis
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New diagnosis

My husband was just diagnosed with stage 4 cirrhosis caused by fatty liver disease.  Needless to say I'm floored.  This comes after over 2 years of questioning ct scan reports of questionable reports of possible issues of liver issues that showed up when scanning for kidney stones. That is water under the bridge and my anger will not undo the end result.  I now have to focus on what is our next step.  my husband has been suffering from health issues with undiagnosed causes, which lead us thankfully to a doctor who noticed the reports of the liver irregularities and refereed him to a gastroenterologist.

My question is should we be looking for a herpetologist?  We are looking for a new internal medicine doc who should have been the first one to pick up on this.  It just seems that is all we have done in the last two years, is visit doctor after doctor.  

So for all his lab test have been normal and I guess this a good thing.  We were told he would have to visit every 6 months for a procedure to check the veins of his liver to make sure they are normal and I that s where my question of should we be switching to a herpetologist.  I have confidence in his gastroenterologist but I want the best possible care for him.

I am sure I will be a frequent visitor to the forum because I don't know what to expect.  He is not a candidate for a transplant because of his age.  He is also diabetic and has been unable to keep his blood sugar under control in the last  2 years not matter what he does.  Which is another thing we have questioned.  
I am  frightened for my husband of 42 years as this has been a real kick in the stomach and we really don't know what to expect as how it will affect his life at this point.  He intends to work as long as possible but his health issues has greatly affected his energy level. Fortunately he is a professor and the demands are light.  
I appreciate any input anyone can give me because I truly do not know what to expect in the future.
13 Comments Post a Comment
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Avatar_f_tn
Yes, I think your husband should be seen by a hepatologist.
Advicate1955
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Avatar_m_tn
Dear Maryann, I agree - your husband needs to see a hepatologist.
Blood sugar issues are fairly common with cirrhosis - in fact several of the more common diabetes symptoms often are also seen in cirrhotic patients..e.g., excessive thirst, skin dryness, vision problems, et al.
I have two questions, please:
(a) How old is your husband?
(b) Exactly what symptoms of liver problem is he experiencing?
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Avatar_f_tn
which lead us thankfully to a doctor who noticed the reports of the liver irregularities and refereed him to a gastroenterologist. I'm interested to know what irregularities he noticed?
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nursegill
  

To: stage 4 cirrhosis people
We were told my dad had stage 4 cirrhosis in the end of May 2012. He is 78 years old and was on medication that did this to him. My brothers and I decided not to tell my mom or him. We just thought they would be a mess. The doctor told me to go home and call hospice he would be lucky if he lived 6 weeks. Here we are today Jan 5 and I still have my dad. Last year he was in and out of hospitals I kept telling the doctors there was something wrong his legs would swell he couldn’t breath walking was becoming very hard. I started doing research on in internet and found his heart medication and blood pressure meds were the problem. I took him off of 23 meds. He was losing blood fast and they could not find the bleed he had lost over 40 lbs. We had blood transfusions ever other week. When we left the 4th hosp over a period of 5 months. My dads white blood count was 1.2 his blood platelet count was at a 4o and the billirubim was out of control. We went home a found a wonderful doctor that put him on vitiams and minerals. And talked me into buying a machine that is a muscle stimulator called a Neurocare 10004xp.I called the company and told them what my dad had and they told me. You don’t die from the cirrhosis you die from the lack of blood getting to all of your organs. They told me were to place the pads and I hook up my dad overnight to this machine. It keeps all the blood flowing to his liver and kidneys. My dad is still not on any meds and eats anything he wants. He has not ever been drained and his kidneys work fine. The doctors have no idea of what is going on with him. They think it is lasex but we don’t take them either. As of last night the gastro doctor called me to let me know that he thinks his liver is recovering. His white blood count was a 4.4 and Bil is a 2.16 all of the liver functions that have been out of whack are just a little elevated now. What he takes is co-q 10 lipid acid, buffered vitamin c 10 a day ,lacetyl l-carnitine, silymarin forte, vitamin d-3 5000mg , muti flora plus probotic, lymphonest, solidago, quicksilver vitamin c spray, corvan ribose, and then we give him a bath that helps get rid of toxins from liquid needles. My dad is back to doing his crafts riding a bike and has no itching, bleeding or ascites
. I am not a doctor just a daughter who loves her dad and was not ready to say goodbye. We don’t know how long we have but right now I will take ever day. I hope this helps someone because I know how it feels when you are told you don’t have long to live and we can not do anything to help you. Theses items that he takes do help the liver flush out the toxins and digest his food easily. They also help the kidneys. His meld score was 18 and now we are at 11. I make sure that we have his blood ck every 3 weeks to keep an eye on his ammonia .levels. Check out some of the items for your self. Keep in mind that some vitamins will do more damage to your liver if they are not the right ones. This may not be for everyone. But it is working for us.

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Avatar_m_tn
Sorry so long for the reply but I have health issues myself.  Chronic migraines... fun times at our house!  My husband is 62. So for the issue that led to diagnosis was a blood test that showed he was anemic and had low blood platelets (a fluke)  and we were referred to a hematologist who noticed the results of previous ct-scans that the radiologist had noted possible cirrhosis of the liver a number of times. He told us this should had been investigated a long time ago and referred us to a gastroenterologist .The unfortunate thing is that I had been asking about those reports since we became aware of them over 2 years before.  But because my husbands liver function have always been normal the doctors have always brushed away my questions.
After being referred by a doctor to ask the question about the scans the gastroenterologist had a biopsy done which indicated that my husband has NASH.       The most noticeable symptoms that he has been suffering the past 2 years if these are related to cirrhosis or not are:  extreme fatigue, exercise intolerance, extreme thirst, all over pain (similar to fibromyalgia)  itchy skin, difficulty for sores to heal, difficulty controlling blood sugar, non refreshing sleep, sleeping for extreme amount of time or inability to sleep,(awake for 24-48 hrs without sleep) agitation, lost of sense of taste and smell. there maybe others his health has decline greatly in the last 2 years it is hard to keep up with every thing.  He has had nuclear stress test and his heart appears fine and although he has kidney stones his kidneys appear fine at this time.  His lung function is fine and his blood pressure is good.  At this time his liver functions are still good and his liver is compensating.  He goes in next month to have an endoscopic  procedure to look at his veins of his liver and this will be done every 6 months from now on.
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Avatar_m_tn
Unfortunately the nearest hepatologist.is about 90 minutes away, that is if they are in network and if they are anyone we would want to see as we know not all doctors  are created equal as we have discovered on this journey of my  husband's illness.  Otherwise the nearest  hepatologist. would likely  be 3 hours away.  I would do what it takes to make sure my husband stays well and if seeing a hepatologist.was something that would not needed to be done often at first I could definitely find away to get him to one. I actually was surprised that we did not have one here where we live as we do not live in a small town, but we do not have teaching or research hospital here so I guess that is why we do not have one.
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Avatar_m_tn
Thank you for the info.  It is something I will look into.  We definitely consider alternative medicine when looking for answers for medical treatment.  Right now all the doctor has told my husband to take is  vitamin E.
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Avatar_f_tn
He needs to be seen and then monitored regularly by a hepatologist.
Advocate1955
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Avatar_m_tn
I feel your pain, and can certainly comiserate:  My docs 'brushed off' my concerns too - for years - since my bloodwork was always normal.  Now I have cirrhosis - palmar erythema, itching, the beginnings of muscle wasting, the whole works - and still have normal LTFs.  
I can be as upset (at their incompetence and lack of knowledge) as I wish, but it changes nothing.  It's why they call it "practicing medicine." Like many people, I placed more faith in medical practitioners than I should have.  And of course, as for liver disease - it's well established that negative emotions, getting upset and depressed - is terrible for the liver, and therefore only makes matters worse!  
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Avatar_m_tn
Comments made by the radiologist to the effect about irregularities that indicated fatty liver and possible cirrhosis and enlarged spleen.  May have been more, at this point I don't recall.  
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Avatar_m_tn
Agreed.  We are in the process of changing pcp as we had 4 who just "brushed" aside this information.  Even a gastro specialist.  And if it had not been for my stubbornness we still likely not know anything as my husband has little confidence in the medical field as it is.  Hopefully we will find a more involved pcp this time we got referrals from two very good doctors that have been helping us through this process.  My husband is a bit of depressed personality as it is and so is a struggle not let this pull him down.  We have been married 42 years and still have a son home who graduates high school this year and still have a lot of years to enjoy life together and I intend to make sure I can keep him as healthy as  possible as long as I can and I know his frame of mind is a very important part of that.  Using this forum as a tool to educate myself about this disease is my first step.  There is so much I don't know.  I truly appreciate everyone here and the info that they have shared and I am sure I will be asking many more questions in the future.
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I very seldom post here or anywhere-i  read alot of posts to learn.The old saying-close mouth and listen.. Anyway your story touched me,i lost my dad from lung cancer last dec. 1,life dont seem fair most days,but i guess its all we have.You and your husband are in my PRAYS......... Danny GOD BLESS US ALL!!!!!
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I would be grateful to only travel 90 minutes to see a hepatologist (you gave me a good laugh with herpetologist - the visual was spectacular).  My hepatologist is 350 miles away and I fly in and out in one day or drive and it takes a couple of days.  Still it is well worth it to me.  I treated my Hep C with a gastro doc in my time and when I relapsed I decided to consult with a specialist.  Through the years, that has been the best decision I made.  I have now been cured of the hep C, but still have early cirrhosis so it is comfortable to know I am in the right place as the cirrhosis progresses.    It is an inconvenience to travel so far, but please do seek out the hepatologist.


nursegill - Although I have never heard of the treatment and equipment you are using with your dad, I am glad it works.  However, please continue to be monitored by a competent hepatologist.  Also, I know it is hard with someone 78 years old, but try to make sure his diet is liver friendly.

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