Tons of questions

[concernedwife2003]

My husband has Cirrhosis and Hepatitis C. I am very concerned for him. He sees a Gastroenterologist but we are thinking about changing doctors. The Dr. is very vague and will not just come out right and tell us how bad off my husband is. My husband has had to have esophageal varices banding done twice. The first time he was an Alcoholic and almost bled to death. He was immediately banded. This 2nd time was a couple months ago and they went in to check the bands and banded off some more varices. He has been cleaned of alcohol and drugs for 4 years now, Praise God! My question is, when it comes to the point of esophageal banding, is your liver very bad off? We had to go see a surgeon today because he has gallstones. The surgeon will not take his gallbladder out because he has too high of a risk of bleeding. The surgeon mentioned a liver transplant, which his gastroenterologist has never mentioned. I am just very confused! Help!

[HectorSF]

Hi.
Taking propanolol intermittently defeats it purpose and is very risky! Propanolol is used to lower portal hypertension and prevent bursting and bleeding varices. Just like banding prevents large varices from bleeding. The two go hand in hand. Since he has been banded so many times he is likely to vomit or defecate blood as his disease progresses. A bleed can be life-threatening. If his is alone he could pass out from the loss of blood and not be able to help himself. If it happens he must go to an ER ASAP. He will need to be hospitalized for possible a couple of days which will be very expense if you have no health coverage. Also once a patient has internal bleeding they are more likely to have future bleeding episodes and the prognosis for survival becomes more poor. Your husband and yourself don't want this to happen!!!

Tell him to talk to his doctor about his dizziness. It is a very common side effect from the drug. I had the same problem when I first starting taking it 3-4 years ago. He can start off with a lower dose and slowly build it back up. While minimizing the dizziness. Over time the body adjusts to it.

As you said "The problem right now is we have no insurance. We have applied for Medicaid and we make too much money, Ha! "
This is heart of the problem for your husband's care.
I know what you mean you make too make money. Meaning you are not entirely destitute which is the only way your state wants to pay you.
If it were my wife I would find a way to get Medicaid or Medicare. I assume your husband is disabled and can't work?
Your husband's life depends on getting health coverage. Many transplant center will take either Medicaid or Medicare. I am on Medicare myself for being disabled and having liver cancer.

Find a way to get rid of that other income somehow. Your husbands life with depend on having insurance soon.

How ill is your husband?
Compensated or decompensated?
Do you have copies of labs?
Have he had any ultrasound, CT or MRIs?
Does he have fluid retention and swelling in his lower legs or abdomen.
Or take diuretics also?

Should he have his varices bleed he will need to be treated at a transplant center or his life will be in danger from not having adequate medical care.
So you must find a way to get insurance somehow.

If your husband is not too ill and The President is reelected, on Jan1, 2014 there will be insurance exchanges created unless your governor rejects the funds as some Republican governors say they will. None of these plans will deny coverage on the basis of a preexisting condition, and all of these plans should include an affordable basic benefit package that includes prevention, and protection against catastrophic costs. They also include federal subsidies to help pay for some of the costs to you.

Unfortunately no one predict how quickly your husband's liver disease will progress. But once he had bleeding varices, ascites and encephalopathy a transplant center will be the only place he can be helped properly.


Good luck!
Hector

[HectorSF]

Thanks PD!

Hector

[Advocate1955]

Unfortunately a gastroenterologist is not qualified to take care of your husband's advanced liver disease.  He needs the specialized care that a hepatologist can give him.  His condition could become life threatening at any time with a variety of complications.  If those complications are not monitored or treated correctly, his liver could fail.  If that happened, he would need an immediate transplant to survive, but there are no guarantees that a liver would be available at that point and time.  That is why it is so important for your husband to have the right kind of care from a hepatologist to keep his liver as healthy as possible until the time comes for a transplant.
If it were me, I would contact the transplant center nearest you and ask about financial assistance.  They may even have information on their webpage.
The care he gets right now may determine how long his liver will stay healthy before either it fails or he gets a transplant.
Advocate1955

[rpooo]

The two hour trip would be well worth the time. I am fortunate to have insurance so I am not real familiar with the financial part of treatment but I wonder if you were to call the transplant center and see if they have a financial aid department or something along those lines. It seems at the very least they would be able to advise you.
If your husband is unable to work due to his condition then disability and Medicare are options you can look in to.
Propranolol: Do not skip doses or stop using propranolol without first talking to your doctor. You may need to use less and less before you stop the medication completely. As the case with most blood pressure medications immediate discontinuation can cause blood pressure to spike increasing serious risk.
Propranolol is often prescribed for cirrhotic patients for treatment of varices. It is used to lower portal hypertension. Portal hypertension is the direct cause of your husband’s varices. By skipping doses he is highly increasing the risks of another bleed. Other medications are available to treat portal hypertension, he should talk to his doctor about prescribing something differently.
Although I don't see dizziness listed as a side effect of propranolol this might not be a good choice for him.
Here is some more information regarding propranolol: http://www.drugs.com/propranolol.html
I hope this helps and wish you both the best. Take care!
Randy

[concernedwife2003]

by the way, my husband is taking Lactulose, and propanolol (don't know if I spelled that right.) He only takes the propanolol sometimes because it makes him dizzy.

[concernedwife2003]

Thank you for allllll of your information! The problem right now is we have no insurance. We have applied for Medicaid and we make too much money, Ha! Right now our only option is the Dr he is going to now, (Gastoenterologist), because they have what they called a Charity Care there, and we applied and they are covering 100% of his Dr bills. We have to reapply every 3 months. We do not have the money to go to another doctor. I would love to get him to a transplant center, but like I said, the money. And the nearest one is over 2 hours away. My husband goes in Nov 12th for more esophageal banding. Then the 14th he sees his Gastro Dr. I have a lot of questions for him.

[pugdaddy]

Hector,
Just a note to tell you how very delighted I am to see your news about undetectable HCV!  What an awesome development - you were certainly way overdue for a spot of good news, and we're believing for sustenance of these results in the weeks and months ahead -
PD

[HectorSF]

Excellent point Randy. It is something that many folks not familiar with transplant centers may not understand. I have been going to my transplant center since 2007 when I was first diagnosed with cirrhosis. I was not ill enough to even qualify to be listed from a transplant. But I have had great care. We tried hep C treatment. I was a null responder. Then when I first had HE and ascites they gave me meds to manage it along with diet. And most importantly when I was diagnosis with HCC they caught it early then treated me with TACE and obliterated the two tumors. They also got me the HCC cancer exception points that I have so I have a MELD score of 30 right now.  My hepatologist choose me to be screened for the GS-7977 + ribavirin trial I am on and now undetectable. I think you can see that they have helped me with a lot more then just listing me for my upcoming transplant and many things that no GI doctor could have done for me.

Evaluation of each patient and pre and post-transplant care are handled by a multidisciplinary team of transplantation surgeons, hepatologists, gastroenterologists, radiologists, oncologists, experts in infectious disease, nephrologists, cardiologists and staff from social workers, nursing, psychiatry and anesthesiology.
Advance liver disease is a very complicated disease involving more than just the liver. So a multidisciplinary team of medical personnel are required to manage and treat it.

What a transplant center can do is to provide the best care to someone with cirrhosis, by performing appropriate maintenance in term of monitoring and managing a person's liver disease, providing them with the best options available (for example for cirrhotics with hep C the most appropriate treatment, HCC surveillance (ultrasounds, AFP and MRIs), diet and exercise programs and some centers even have mental health services for dealing with the stress such a life changing diagnoses.

Should a transplant be needed than the center will make all the arrangements of getting a patient listed for transplant, prepared for transplant and the transplant center will follow the patient through the recovery from surgery and for the rest of the patients life. Liver transplant is a life long commitment to care for the donor liver you have received. All post transplant patients must take daily medications and have various tests periodically for the rest of their lives.

So as Randy and Advocate say, there is much more to it then just liver transplant. It is the best place for a patient with cirrhosis to receive the highest level of care. Don't we all want the best care possible when we have a possible life-threatening illness? I know I do.

Hector

[Advocate1955]

Thanks for clarifying that Randy.  Absolutely, care at a transplant center does not mean that a transplant is required or right around the corner.  My husband's care is with a hepatologist in a transplant center.  He's been under her care since 2007, and he is no where near needing a transplant.  However, she is the best equipped to manage his specific case and if the day comes that he does need a transplant, he is already known there.
Advocate1955

[rpooo]

I thought I would also mention that just because he is seeking treatment at a transplant center doesn't mean he needs a transplant. Cirrhosis is as you know a terminal illness and requires a high level of treatment. This will prepare him for down the road if transplant is required.

[Advocate1955]

I hope that you will be able to get your husband an appointment with a hepatologist at a large research university medical center with transplant services available.  A hepatologist is the type of specialist your husband needs, as others have said above.
Here is a link for the Saint Louis University's Liver Center.  They have hepatologists on their faculty and they are connected to the Saint Louis University Hospital which has a transplant center:
http://livercenter.slu.edu/
Good luck, and please keep us posted.
Advocate1955

[rpooo]

Hello and Welcome to MedHelp!

Orphaned Hawk sad it perfectly, your husband needs to be registered and evaluated by a transplant hospital as should anyone with cirrhosis.
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Esophageal varices are swollen veins in the lining of the lower esophagus near the stomach. Gastric varices are swollen veins in the lining of the stomach. Swollen veins in the esophagus or stomach resemble the varicose veins that some people have in their legs. Because the veins in the esophagus are so close to the surface of the esophagus, swollen veins in this location can rupture and cause dangerous bleeding.

Esophageal varices almost always occur in people who have cirrhosis of the liver. Cirrhosis causes scarring of the liver, which slows the flow of blood through the liver. Scarring causes blood to back up in the portal vein, the main vein that delivers blood from the stomach and intestines to the liver. This "back up" causes high blood pressure in the portal vein and other nearby veins. This is called portal hypertension.

The backup of blood forces veins to enlarge in the vicinity of the stomach and esophagus. The veins don't enlarge in a uniform fashion. Esophageal varices usually have enlarged, irregularly shaped bulbous regions (varicosities) that are interrupted by narrower regions. These abnormal dilated veins rupture easily and can bleed profusely because:

The pressure inside the varices is higher than the pressure inside normal veins

The walls of the varices are thin

The varices are close to the surface of the esophagus.

For treatment, prevention and prognosis visit: http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10959.html
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The stage of esophageal varies cannot be used to stage cirrhosis. Liver biopsy and/or CT Scan is used depending on the patients situation. Biopsy is the gold standard for staging cirrhosis. A diagnosis of Hep C would warrant biopsy so as to determine treatment options to eliminate the virus and slow the progression of cirrhosis.

It is wonderful to hear your husband is 4 years clean now. This was the best thing he could have done to save his own life. Now comes part two and that is the treatment for his hepatitis. The transplant center is your next step and they will be able to provide him with a higher level of treatment than any other doctor would be qualified to do no matter how good their intentions may be.

I hope the best for you and your husband. Take care.

Randy

[HectorSF]

"My question is, when it comes to the point of esophageal banding, is your liver very bad off? "
Yes your husband may be too ill to treat his hepatitis C so in time as his cirrhosis progresses he will need a liver transplant.

"We had to go see a surgeon today because he has gallstones."
Gallstones are common in patients with cirrhosis. The surgeon is correct a liver transplant may be his only option.

Please follow OH advice. When a patient has bleeding of esophageal varices he should be referred to a liver transplant center. His gastroenterologist is not qualified to treat a person the has such advanced liver disease. Bleeding varices are but one life-threatening complication of cirrhosis. There are others. Only a transplant center can help him manage his cirrhosis.

Varices do not cause symptoms until they leak or rupture, leading to extensive bleeding. Signs of bleeding from varices can include vomiting blood, dark-colored or black stools, and lightheadedness. If bleeding is severe, the person may lose consciousness. Bleeding varices require emergency medical treatment. If not treated quickly, a large amount of blood can be lost and there is a significant risk of dying. If one or more of these symptoms develop, the person needs to seek emergency care (the ER).
Once you have had a bleeding episode, you're at greatly increased risk of another, especially immediately following the first episode. The risk of bleeding is related to the location, size, and appearance of the varix, presence of red wale markings, variceal pressure, prior history of variceal bleeding, as well as the severity of liver dysfunction (classified by Child-Pugh class.) Recurrent bleeding is common in people with esophageal varices — up to 70 percent will bleed again within one year of the first episode of bleeding without treatment. The likelihood of death increases with each episode. You're at greater risk of repeat bleeding if you are older, have liver failure or kidney failure, or drink alcohol.
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AASLD (American Association for the study of Liver Diseases) PRACTICE GUIDELINES
"Prevention and Management of Gastroesophageal Varices and Variceal Hemorrhage in Cirrhosis"

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Prevention%20and%20Management%20of%20Gastro%20Varices%20and%20Hemorrhage.pdf

"Patients with Cirrhosis Who Have Recovered from Acute Variceal Hemorrhage Patients who survive an episode of acute variceal hemorrhage have a very high risk of rebleeding and death. The median rebleeding rate in untreated individuals is around 60% within 1-2 years of the index hemorrhage, with a mortality of 33%."

"Combination of nonselective
-blockers plus EVL (banding) is the best option for secondary prophylaxis of variceal hemorrhage. The nonselective
-blocker (such as Nadolol) should be adjusted to the maximal tolerated dose. EVL (banding) should be repeated every 1-2 weeks until obliteration with the first surveillance EGD performed 1-3 months after obliteration and then every 6-12 months to check for variceal recurrence"

"Patients who are otherwise transplant candidates should be referred to a transplant center for evaluation."

The nearest transplant center is the University of Oklahoma. A friend of mine was treated there are had good results.
Oklahoma Transplant Center
940 NE 13th Street
405-271-7498, 1-888-777-7081

You should have your gastro get an appointment for your husband ASAP. He can send all of your husband's medical history to them so they don't have to start from scratch One you get connected with OU they will help your husband to be as healthy as he can for as long as it can. Diet, exercise, medicines, liver cancer surveillance are all provided at OU and he needs someone monitoring his liver disease from now on.

Varices do not cause symptoms until they leak or rupture, leading to extensive bleeding. Signs of bleeding from varices can include vomiting blood, dark-colored or black stools, and lightheadedness. If bleeding is severe, the person may lose consciousness.


Bleeding varices require emergency medical treatment. If not treated quickly, a large amount of blood can be lost and there is a significant risk of dying. If one or more of these symptoms develop, the person needs to seek emergency care.


The most serious complication of esophageal varices is bleeding. Once you have had a bleeding episode, you're at greatly increased risk of another, especially immediately following the first episode. The risk of bleeding is related to the location, size, and appearance of the varix, presence of red wale markings, variceal pressure, prior history of variceal bleeding, as well as the severity of hepatic dysfunction (classified by Child-Pugh class.)

Recurrent bleeding is common in people with esophageal varices — up to 70 percent will bleed again within one year of the first episode of bleeding without treatment. The likelihood of death increases with each episode. You're at greater risk of repeat bleeding if you are older, have liver failure or kidney failure, or drink alcohol.


Good luck to you both!

[orphanedhawk]

Your husband should be seeing a heptologist at a transplant center which is a liver specialist. GIs are not as thoroughly trained in liver disease.

It does sound like your husband has decompensated cirrhosis.
He should be on a strict low-no salt diet and not eat red meat.
He does need protein and can get it from eggs, fish, chicken or tofu and beans.
Read all labels. Avoid sodium, which is salt. Stay away from processed foods. When feeding your husband, think fresh and organic. This is to make it easier for his damaged liver.

I'm sure our 'expert' Hector will come along to more thoroughly answer your question.

BTW: If your husband has a liver transplant the gall bladder will be removed at that time.
Perhaps you can ask the surgeon you spoke with to recommend a good hepatologist for your husband. Don't delay.

Good luck