I've been on this forum for several years now under the name "HaveFaith4Me". Somehow it locked me out of my account so this is my new one.
Yesterday my husband went in for another EGD, 6 more bands were placed. This makes a total of 17 bands that have been put in the last 4 months. I do not understand why they keep adding them if their obviously not working? I've read about shunts being put in if the banding does not work, is anyone familiar with this? Please help I feel so helpless. He has thrown up all day today (2 bands thrown up).
Doctors say he is a stage 4 cirrhosis, they've never mentioned if he's decomp or comp liver. Our doctor says overall he looks great, no accidtes (spell check). He has enlarged varricies tho and of course an enlarged spleen. I see all these people saying their loved ones were diagnosed with stage 4 cirrhosis and that the doctor said that's it there's nothing they can do so my question is WHY have they not told me this yet??? Should we even do hep c treatment if he's already stage 4? My heart is broke and I feel like my whole world has came tumbling down :(
I was touched by your last sentence as I can relate to your story completely.
My husband was diagnosed with Hep C and Stage 4 Cirrhosis in Dec. 2010. He too had esophageal varices that had to be banded. No ascites but had portal hypertension, hepatic encephalopathy and edema. Within six months. he was listed on a liver transplant list after being diagnosed with end stage liver disease. In late 2011, he tried triple treatment with Incivik, but had to stop after 5 weeks. He went into kidney failure but thankfully recovered most of his kidney function. After this experience, we looked for a transplant center in the South where he would be transplanted with a lower MELD score. Your MELD score does not always reflect how sick you are. He received a liver transplant six months later.
I am retelling my husband's story because I believe as long as you have hope and don't give up there is always something that can be done.
Is your husband being seen by a hepatologist (liver specialist) at a major liver transplant center? If not, that is something you need to do ASAP. His symptoms are very serious and he needs the best care possible. They will tell you what his current condition is and whether he needs to have liver transplant to save his life.
My husband's story is still ongoing. He has recurrent Hep C and bile duct damage which has now caused cirrhosis of the new liver. He just started a new Hep C treatment and we are hopeful that soon his Hep C will be a thing of the past.
I hope our story will give you hope and help you to push on. It's been a long journey for us and the journey is not over but he is alive and we will keep fighting.
As you know, there are many on this forum that will offer you information and support. All you need do, is ask.
I have hep c with cirrhosis. I have probably had hep c for 37 years more or less. I was a null responder to at least 3 or 4 treatments.
Two years ago I had grade 3 non bleeding esophageal varicies. It took 4 sessions of banding to get them all. They cannot band them all at one time and they have to go back to make sure they got them all. So what is going on is common in banding of varicies that they have to repeat the process several times.
The good news is I just was checked again and I still do not have any new varicies.
I would also like to suggest if your husbands Dr recommends treatment yes go for it you have to stop the virus NOW if you can. Hopefully, if the virus can be gotten rid of his liver will suffer no further injury. Also if he does end up needing a transplant the new liver won't be at risk of damage from hep C.
There are new treatments coming out that won't need interferon and even the medicines just released in December have some non interferon options depending on genotype.
My Dr is asking my insurance for pre approval of sovaldi / olysio off label combo which for patients like me Genotype 1a null responders with cirrhosis F4 they have been getting SVR in over 90% of patients.
Again hang in there and see if your husband can qualify for treatment
Thank you both for sharing your stories. Yes we are seeing a hepatologist on a liver transplant team. They said about 7 months ago his MELD was 15 I beleive. This May our doctor is starting him on the new treatment sofa/riba combo. Over a year ago we did the peg/riba combo and went UND at 3 weeks and stayed that way until he relapsed several months later.
It's so hard to watch someone you love have to go thru this. They suspect he's had hep c for 20+ years from a blood transfusion when he was younger. This disease is terrible but I know there are many new drugs out there that they are working on to treat it.
Does hep c usually come back even after a liver transplant? Are any of you familiar with partial liver transplants?
"Does hep c usually come back even after a liver transplant? Are any of you familiar with partial liver transplants?"
If a patient does achieve SVR before transplant, yes Hep C will return after the liver transplant. My husband was "unquantifiable" for Hep C for 8 months prior to his liver transplant but was told it will return after transplant.
The doctors were correct. It has returned and has now caused cirrhosis of the new liver.
Your husband's case will likelyl turn out differently. If he is able to treat pre-transplant and achieve SVR, he will be cured and not have to worry about recurrent Hep C. If he unable to treat before transplant, at least there are treatments available now that he can start on a lot sooner after transplant before the new liver is damaged.
As for a partial liver transplant, my understanding is that these are done if the donor is a living donor. My husband's donor had sadly passed away. (May she rest in peace.) He received a full liver transplant.
"I do not understand why they keep adding them if their obviously not working? "
They are working. They prevent bleeding from the site they are applied to. He is being banded more because other varices are developing that are at the risk of bleeding.
A little background about varices and cirrhosis from the American Association for the Study of Liver Disease (AASLD).
“Gastroesophageal varices are the most relevant portosystemic collaterals because their rupture results in variceal hemorrhage, the most common lethal complication of cirrhosis. Varices and variceal hemorrhage are the complications of cirrhosis that result most directly from portal hypertension. Patients with cirrhosis and gastroesophageal varices have an HVPG of at least 10-12 mm Hg.
Gastroesophageal varices are present in approximately 50% of patients with cirrhosis. Their presence correlates with the severity of liver disease; while only 40% of Child A patients have varices, they are present in 85% of Child C patients.”
“Variceal hemorrhage occurs at a yearly rate of 5%-15%, and the most important predictor of hemorrhage is the size of varices, with the highest risk of first hemorrhage (15% per year) occurring in patients with large varices. Other predictors of hemorrhage are decompensated cirrhosis (Child B/C) and the endoscopic presence of red wale marks. Although bleeding from esophageal varices ceases spontaneously in up to 40% of patients, and despite improvements in therapy over the last decade, it is associated with a mortality of at least 20% at 6 weeks.”
8. In patients with medium/large varices that have not bled but have a high risk of hemorrhage (Child B/C or variceal red wale markings on endoscopy), nonselective beta-blockers (propranolol or nadolol) or EVL (banding) may be recommended for the prevention of first variceal hemorrhage (Class I, Level A).”
I other words your husband is unfortunately very ill. He is at a high risk of a variceal bleed which is a life threatening complication of advanced cirrhosis. Once a patient has their first bleed their prognosis becomes worse. They have a high risk of future bleeds and other complications.
"Our doctor says overall he looks great, no accidtes (spell check)."
This is a hepatologist at a liver transplant center that said this?
This statement makes no common sense. Your husband has advanced cirrhosis which can be fatal. Another point is that not all people with advanced liver disease have ascites. Just like not all patients have varices that are at risk of bleeding. Any intern know this. Each patient with liver disease is different and must be treated for their particular issues. So that statement has no baring on your husbands health status. There much be some misunderstanding as this statement is nothing any doctor would say about a patient with cirrhosis and portal hypertension.
Hepatitis C treatment is really not the issue. His liver disease is unstable and apparently getting worse. Until his liver disease is addressed hepatitis C treatment would be very risky and cause further liver damage or liver failure. His hepatologist should be focused on getting him stabilized and ready for transplant. If his condition improves then hep c treatment can be addressed.
Thank you for mentioning your husband's donor. That was really beautiful to see. I feel the same way about my donor. She was only 36 years old which makes me sad to think about. I try to live every day as best I can to honor her generosity that saved my life and is allowing me to live a healthy and happy life without a'' the suffering from my cancer and cirrhosis I lived with for so many years. I am very happy and grateful to have her liver inside me every day. I could never have hoped for anything greater in my life. I truly feel I am one of the luckiest people of the planet.
I am so very sorry about your husband's aggressive hepatitis C. I am glad he has you to support him. I can't even imagine how difficult it must be. I think about you and your husband often and am always wishing the best for the both of you.
I mentioned to his doctor several months ago if he thought we were looking at a transplant, he said if we can get the hep c virus cured then my husband could live without having a transplant. I'm only 23 so please forgive me if I don't understand everything, this has been very difficult for me to understand.
I understand they will keep banding him until his liver is stable. I'm just so confused on all of this I hear so many different opinions.
I have cried for 3 days straight basically because I don't know if I'm looking at losing him soon. I know he is very ill but looking at him you wouldn't know that so like I said forgive me if I'm confused as I am still young trying to learn everything. I hear from his doctor that everything is going to be ok and that they will get this all under control and then when I get on here and start looking at posts I can feel my heart almost stop because it looks as if he is dying soon.
Apparently there is a big difference between "Undetectable" and "Unquantifiable". My husband was considered Hep C detectable yet unquantifiable meaning his Hep C viral load was so low (after 5 weeks of triple treatment) they couldn't quantify it. It remained that low for 8 months.
In this layperson's terms - I personally think its because his old liver was so shot (he had ESLD at that point) the virus was unable to replicate well after the treatment but when he got the new liver and everything was working well again, the virus had a party and invited lots of friends.
"Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them. However, for these people, the virus never really left. The medicine was able to eliminate most of the virus (so much that medical tests couldn't detect it), but after treatment ended, for whatever reason the virus was able to continue replicating itself."
As you are quite young (23) to be dealing with all this, I can understand how very difficult it is for you. There is much to learn. The more you learn about this disease, the more you will understand and then be able to ask the questions you need to ask the doctors. I have a feeling that because you are so young, the doctors are telling you only what you ask and only as much as they think you can handle.
How much is your husband able to participate in these discussions with his doctors? You both need to to know (and have a right to know) what his present condition is and what the best plan of action is for him.
Has he had a liver biopsy? If so, what did the report say? How are his liver enzymes in his lab work? AST / ALT / ALK PHOS/? Billirubin?
Does he have symptoms of mental confusion? If so, this can be signs of hepatic encephalopathy, which is one of the symptoms of advanced liver disease.
I know this is overwhelming and stressful. I suggest you take it one day at a
time and not think too much of what may happen. You have no control over that. All you can control is being the best caregiver/supporter you can be for your husband during this very difficult time.
Thank you, Howie. I think of you often as well. You have helped so many of us here on this forum. I can't think of anyone more deserving of having been blessed with a life saving liver transplant.
My husband's donor was only 28. It is doubly painful to know her gift is being destroyed by this insidious virus. I know you can especially understand that.
He is on day 14 of the Sovaldi + Ribavirin treatment. I see him very fatigued some days and he's had some bouts of HE. Otherwise he's doing pretty well considering. Nothing like when he was on triple treatment. Doctor is running a HepC RNA test tomorrow. He is only taking 400 mg of Ribavirin so I am curious if this will make a difference. Dr is keeping it low due to past anemia and kidney issues. Still taking a procrit shot a week.
Thank you again for your kind thoughts and wishes.
Thank you for being understanding. My husband is older than I am so he's able to understand the doctors better than I. His step father also had a heart transplant years ago so he's familiar with transplant process.
I have a copy of his blood work with AST and ALT levels, I will message you tomoro the numbers it says. They have never done a liver biopsy only MRI and CAT skans. We begin soba/riba treatment in May and go back in 4 weeks for another EDG.
You ARE doing great under the circumstances believe me. It may not feel that way but it is true. I meet many patient's loved one's right after they find out that their loved one has serious liver disease and may need a liver transplant. They are naturally devastated and upset to learn of such news. Many are only able to manage to take care of themselves at such a time. Which is important but they can't do what you are doing by being proactive and wanting to learn more about what is going on so they can be more helpful. Truly you are managing to deal with a situation that no one ever wants to have happen to them. The emotions and thoughts you are having we all have when someone we love has a serious illness it shows how much we care for them. Hang in there you are doing great and you will both get through this as so many others like myself have.
The blood numbers the are import are the number that are used to determine how sick a patient is from their liver disease. There is a formula that people at the transplant center use along with three lab tests results to determine what a patient's MELD score is. This is the number that determines not only how ill they are from their liver disease but also but where they are on the transplant waiting-list which determines when a person will need and get a liver transplant. The lab tests are...
INR - measures the liver’s ability to make blood clotting factors. When the liver isn't working well patients have problems with clotting and tend to have problems stopping bleeding.
Bilirubin - measures how effectively the liver excretes bile; a good test of the amount damage to the liver.
When the liver is failing the patient's eyes and appear yellow (jaundice) because the bilirubin is not being eliminated properly from the body.
Creatinine - measures kidney function. Impaired kidney function is often associated with severe liver disease.
Even though in the medical community and in medical publications they commonly, and incorrectly, are referred to as liver function tests, or AST or ALT tests and are only used to detect inflammation due to injury or damage to the liver from any source. Even in conditions when AST and ALT are very elevated, the liver still may function properly.
The precise levels of these liver enzyme tests do not correlate well with the extent of liver problems or the prognosis (outlook). Thus, the exact levels of AST (SGOT) and ALT (SGPT) cannot be used to determine the degree of liver disease or predict the future prognosis for liver function. For example, people with chronic hepatitis C infection typically have only a little elevation in their AST and ALT levels while having substantial liver injury and even advanced scarring of the liver (cirrhosis) from ongoing minor inflammation of the liver.
What is used by doctor's who work with patients with liver cirrhosis is the MELD score. The Model for End-Stage 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.
There is no reason to do a liver biopsy. It is already known that he has stage 4 liver disease, commonly called cirrhosis. He wouldn't need the banding of his varices if he didn't have cirrhosis and portal hypertension. People with lesser stages of liver disease do not have varices. Varices only appear when a patient hasf cirrhosis and portal hypertension.
Your husband's liver disease while serious may not be as advanced as you may think. So by getting his medical records you can learn more about just how ill he really is and what there may be to worry about and what you don't have to worry about. The good news he is receiving proper care and being monitored. The doctors do all they can to keep him as healthy as possible for as long as possible. That is their job.
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