Hep C and Post TIPS waiting on transplant

[Tiene]

My husband has been infected with Hep C for many many years and did not know it, he only found out when he was hospitalized for severe bleeding. ( varices and esophogial ) His heart stopped and he was shocked back to us.  He was in a coma for 10 days and had the TIPS procedure.  It has been 18 months and he is getting very confused, has little to no energy, sometimes sleeps for days and sometimes cannot sleep at all.  Can someone tell me " are we at the end stage of this liver disease" or do we have years to look forward to and things will get better. He also was told when he was in the hospital that he has acute advanced cirrhosis. I am scared and seeem to get no straight answers from anyone. Thanks so much!

[sfwandwow]

Iam sorry to hear ur news just keep faith and hope...Iam thinking and praying for ya Sandy

[Mary4now]

What have his tests determined?  Has he had a biopsy? What do the doctors say about his stage and grade?
Sorry If I missed this... I send you many blessings and good thoughts... M

[Mr Liver]

Is your husband listed for a liver transplant ?  These symptoms he is displaying should be discussed with his doctor. I'm not sure what you meant by not 'getting any straight
answers". It's been my experience that if you ask a doctor straight up (and you are legally married or the closest surviving kin) they will tell you his prognosis.  If your husband is lucid and asks they will tell him also. I have never heard of a doctor withholding information from those entitled to know.

He is displaying some classic symptoms associated with encephalopathy. If you google it you will find a ton of info. If he already has a prescription for lactulose (enulose) his doctor should be consulted right away concerning the dosage and any necessary changes. In any event it is important that you discuss the symptoms your husband is displaying to his doctor as soon as possible. Like tomorrow.  If encephalopathy turns out to be the problem, there is a treatment that will reverse it.
Mr Liver

[Mr Liver]

You mentioned the changing sleep patterns which is one of the symptoms you mentioned that is also associtated with encephalopathy. One strange thing that can happen to some is 'sleep reversal'. Not to be confused with insomnia.  Its where the person cannot sleep at night, but has no problem sleeping during the day. I just wondered if this cycle has ever occurred to your husband ? Best to you both.
Mr Liver

[Tiene]

Thanks so much for the kind words, it is greatly apprecaited.
He is on the liver transplant list and has been since November of 2006 when he had the TIPS procedure.  The Dr's don't "not" tell me things they just don't seem to have decisive answers. I don't know if this is still in the beginning stages or if we are in the middle stages or if this is nearing the end stages. Living each day not knowing if it is going to be his last is tremendously painful ( to both of us ). They did increase his enulose dosage and his spirolactane (sp?).   The last 4 days he has gotten to be a very dark gray color and is throwing up all the time. He is mincing in pain and I just hate I can do nothing about it. I hate I have to leave him alone but I am the only source of income and the one who keeps the insurance for us both.  He has had a biopsy and they say his liver is degenerating at a constant rate, since he has had the TIPS procedure his liver gets little to no blood flow ( as I understand it ).  There was so much information at the hospital that it was hard to take it all in. He has never before had these sleep issues but yes when he does sleep he does it during the day and not at night. Sleep usually comes to him in 45 min to 1hr increments. I have never had the Dr tell me a stage or a grade. The majority of his Dr appointments I have to have friends take him as I cannot afford to be off work and I think the Dr tells him more than my husband tells me. His Dr's are 4 hours away from us as there are no Dr's qualified in the small town we live in. I thank you again, just having people to talk to is a weight off my anxiety level. Blessings to you all!

[Texas714]

I'm sorry for you and your husband.  Maybe there are more test they can do to give you a better idea of where he is in all of this.  

[HectorSF]

I am very sorry to hear about your husband’s illness. There is still hope. A new liver can give him a new lease on life!

It is great that he is on the transplant list. In order for him to get a transplant, blood tests are taken periodically to see how he measures on something call the MELD score. MELD scores are use for allocation of donor livers. The sickest patients get a liver first. If you knew his MELD score you would know how close he is to getting a transplant (and how ill he is).

The Model for End-Sage Liver Disease (MELD) system was implemented February 27, 2002 to prioritize patients waiting for a liver transplant. MELD is a numerical scale used for adult liver transplant candidates. The range is from 6 (less ill) to 40 (gravely ill). The individual score determines how urgently a patient needs a liver transplant within the next three months. The number is calculated using the most recent laboratory tests.
Lab values used in the MELD calculation:
·  Bilirubin, which measures how effectively the liver excretes bile;
·  INR (formally known as the prothrombin time), measures the liver’s ability to make blood clotting factors;
·  Creatinine, which measures kidney function. Impaired kidney function is often associated with severe liver disease.

To calculate your husband's MELD score you will need his latest blood test results.
You can find an online calculator here...then plug in his lab result values.
http://www.unos.org/resources/MeldPeldCalculator.asp?index=98

Your husband’s liver is at Stage 4. Cirrhosis. This is advanced liver disease. There are two stages of cirrhosis. Compensated and decompensated. Your husband has decompensated cirrhosis. The most advance stage of liver disease I'm afraid. Meaning he is showing signs that his liver is unable to function properly. This is what causes bleeding varices (internal bleeding), Ascites (fluid in the belly), Encephalopathy (confusion), etc.
To learn more about cirrhosis please visit this web site.
http://www.medicinenet.com/cirrhosis/article.htm

His liver disease will continue to progressive over time until he receives a new liver. With a new liver he can live for many years so although it is very difficult now there is hope for a better future. Do not give up hope.

I assume he is being treated at the transplant center for all his liver issues. These are the most qualified people and the people you want to develop a good relationship with. When your husband needs the transplant they will help you both through the process.

TIPS info:
Note that encephalopathy is the most common side effect of TIPS!
Transjugular intrahepatic portosystemic shunt (TIPS) is a non-surgical procedure to decrease the pressure in the portal vein. TIPS is performed by a radiologist who inserts a stent (tube) through a neck vein, down the inferior vena cava and into the hepatic vein within the liver. The stent then is placed so that one end is in the high pressure portal vein and the other end is in the low pressure hepatic vein. This tube shunts blood around the liver and by so doing lowers the pressure in the portal vein and varices and prevents bleeding from the varices. TIPS is particularly useful in patients who fail to respond to beta blockers, variceal sclerotherapy, or banding. (TIPS also is useful in treating patients with ascites that do not respond to salt and fluid restriction and diuretics.) TIPS can be used in patients with cirrhosis to prevent variceal bleeding while the patients are waiting for liver transplantation. The most common side effect of TIPS is hepatic encephalopathy.

Best of luck to the both of you!
Hector

[Mr Liver]

Your concern is very understandable. The uncertainty of which direction  things are headed can creat anxiety. Here's what I would do if I was having a hard time understanding their tx decisions. I would pull out a copy of the Child-Turcotte-Pugh classification system for grading and staging . Each extrahepatic system is scored and pts added to see if you fall into A,B, or C. This is a prognosis test based on the different parameters measured.and the pts accrued The score reflects how much time on avg you have before you tp or die.The low end starts with A.
Take it and give it to his liver doc and say that you would like it back filled out before you leave. Come back here to the forum or google it and we'll figure it out. Any probs come here and ask. It's very easy to sort through.

[Tiene]

Thanks- I will gather his information from his appointment last week and be back with more questions. Your kind words and information are very very appreciated. God Bless you all!

[Tiene]

I have another question i want to ask, his Dr has made us an appt for next Thursday since i have started asking alot of questions via the phone. But for now I have something bothering me. My husband has started having nosebleeds 5-10 times per day??? Is this to be expected?? They stopped the Neomyacin as he was just horrible sick with it and got very dehydrated and just not well.  They have never, according to his DR, treated him in anyway for the Hep C as they said his liver was to bad to be concerned with it. ??? Which or both of these are why he is asleep 23 hrs a day and when he does get to the couch he won't shower or get dressed unless i force him?? or is that depression?? I am just so confused. Thanks again

[zuni]

Dear Teine,your questions are all exactly the same questions I am dwelling on and worrying myself sick about ,as my 44 year old Daughter has exactly the same symptoms and hardly ever out of Hospital ,her hepatic Encephalopathy and moods scare we her Parents and we cant ask questions when with her at the Hospital as we fear she may become even more depressed if she didnt like the answers God help all of us who love our Dear ones so much and so in the grip of fear all the time ,God Bless Zuni