Dealing with HCV Post liver transplant

I've read through a few threads and I hope someone can help me here...My 70 y.o. father-in-law had a liver transplant in April 2012. He has HCV genotype 1, as well as liver cancer, and was on the transplant list for ~ 1yr. His transplant was performed at UCLA, which is supposed to be one of the top transplant centers in the nation. For some reason, the docs told him that it is very rare for HCV to attack a new liver, and that even if it does, it will progress very slowly. He's been having a hard time since the transplant. Fortunately, he hasn't rejected the new liver, but he's lost his appetite and is feeling very fatigued and weak. His bilirubin levels are high (~12), which is what compelled the docs to do a biopsy and discover the HCV has already progressed to stage 2, just 3 months after the transplant. Now they are recommending immediate antiviral treatment, either pegylated interferon + ribo (docs said 35% chance of success but my own research indicates that figure is somewhat optimistic); OR boceprivir (which hasn't had much testing in post transplant patients). I'm worried that the side effects of either treatment might be too much for him and the success rate seems really low to put him through all that. He's already depressed, weak, and having lots of side effects from the immunosuppressing drugs. Is no antiviral treatment an option? Any advice would be greatly appreciate.

[HectorSF]

Hi.
I am sorry to here about your father-in-law's post transplant hepatitis C issues. Unfortunately this does happen in a minority of patients and there is no way that it could have been predicted.

Although I am not personally familiar with UCLA's liver transplant program, I have heard that it is one of the most experienced and best transplant centers in the country. That this rapid liver damage happened is not something that was caused by where he received his transplant. It is due to the nature of the hepatitis C virus and your father-in-law's own biology and genetic makeup.

"the docs told him that it is very rare for HCV to attack a new liver, and that even if it does, it will progress very slowly."
I am afraid there was a misunderstanding about HCV and what happens to a patient post transplant. If a patient is infected with the hepatitis C virus when they have a transplant. Recurrent hepatitis C virus post transplant is universal. Meaning any patient that has hepatitis C prior to transplant will infect the new donor liver within a short time after transplant. In fact 20-30% of all patients with hepatitis C develop cirrhosis which will lead to liver failure in the donor liver within 5 years of transplant. This is a major issue for us with hepatitis C that has not been solved. This is one of the leading causes of the need for 2nd transplants.

"he hasn't rejected the new liver"
Organ rejection is very rare these days and is very rarely an issue. By monitoring blood levels, signs of rejection can be seen and the post transplant drugs are tweaked to prevent rejection.

"HCV has already progressed to stage 2, just 3 months after the transplant."
This is very rapid progression of liver disease cause by hepatitis C and HCV treatment should be initiated now that his liver disease has progressed to stage 2 liver disease.

"docs said 35% chance of success but my own research indicates that figure is somewhat optimistic"
The doctors are correct. The standard treatment post transplant is peg-interferon and ribavirin. Small, select groups of post transplant patients are currently treating with the new antiviral drugs but there is no data available to know who can treat, what the safety issues are, and what the percent of patients that achieve SVR is. It is experimental at this time. But doctors are trying to learn if by adding a DAA such as boceprivir is the SVR rate can be improved.

" I'm worried that the side effects of either treatment might be too much for him and the success rate seems really low to put him through all that. "
The doctors will be concerned about the same issues. That is why he will be monitored very closely. The HCV treatment protocol includes a 4 week lead in with only peg-INF and ribavirin. (this is standard for treating with boceprivir and can be used with telaprevir also). So what they will probably do is start your father on the 2 drugs seeing how he responds and then add the third drug if he is responding well and not having serious complications from the treatment.

UCLA and all of the large transplant center in this country are experienced managing patients like your father. Yes, it is very difficult but he is at one of the most experienced transplant centers. He is only 3 months post transplant. He is still recovering from his transplant surgery so he has multiple issues going on at the same time.

Is no antiviral treatment an option?
Not really. Without intervention his new donor liver will fail as his hepatitis C damages his donor liver. What can take 30-40 years to happen can happen within a year post transplant. Without hepatitis C treatment it is possible the his liver could develop cirrhosis and decompensate within a year. As you know, organs are in short supply because many American don't donate their organs upon their death When they no longer need them. This is a social issue many of us are working to change. It is difficult to get a first liver transplant. It can be even more difficult getting a second transplant especially at your father-in-law's age.

If you want to know more about your father-in-law's condition you could go to the hospital when the doctors perform "Grand Rounds" (all of the attending physicians and their teams that are treating your father-in law). That is the time you can ask questions, make comments, and advocate for your  father-in-law. Tell them that his is depressed if they don't already know. Perhaps they can give him an anti-depressant if it won't complicate matters by adding another drug that could interact with all the drugs he is already taking.

Your  father-in-law is suffering a lot. I hope someone from the family is with him as much as possible. People should take turns being with him at the hospital so no one people gets burned out. I had a close friend who was hospitalized for 6 months post transplant as she had multiple complications from her transplant. Her friends setup a schedule so that every day someone was with her. After being in the hospital that learn she had to learn to talk and walk again which was a slow process but she pulled through and is know leading a normal healthy life (going to the gym to workout and hiking mountains a few days a week) four years post transplant. So there is always hope.

I am very sorry this has happened to your  father-in-law. Some people think that a person has a transplant and then it is smooth sailing afterwards. Only a small percentage of patients are never hospitalized after the typical 7-10 days post transplant recovery period. Most patients have some "bumps in the road" as we in the transplant community call it. Your father is going through a very challenging time. I am not sure how difficult it was for him before transplant but every day of life post transplant is a gift as he is still alive. I don't know if you know this but just 10 years ago liver cancer was a death sentence. If a patient had liver cancer they couldn't get a transplant and were told to get their things in order and prepare to die.

I also have liver cancer and hope to have a transplant within the next 6 months. I know there are no guarantees. And it frightens me. If I don't clear my hepatitis C virus before transplant I could end up in the same condition as your father. There is no crystal ball that will tell us what will happen post transplant. All I know is that without a transplant the liver cancer will kill us probably sooner than later. So a transplant is our only and best option. Remember liver cancer is a terminal illness. A transplant gives us a chance to live longer. Unfortunately in life there are no guarantees. So I understand what you and your  father-in-law must be going through. Please support your father in whatever way you can. The doctors will do the best they can with the options available to them. I am very sorry that you have to go through this very difficult ordeal. Try to stay hopeful as much as you can. Maybe your father could be one of the 30% that beats the HCV virus.

I hope this information is helpful to you in some way.

Hang in there as best as possible.
Feel free to send me a private message if you like.
Keep us informed of how your father-in-law is doing and what happens with his treatment.

Best wishes.
Hector

[IAmTheWalrus]

Everything Hector says is spot on, almost exactly as I have heard it from my hepatologist and from my reading, and thourough! You're a treasure, Hector!

I am a transplant patient and was part of the "universe" of new livers  reinfected by HCV. Disease progressed rapidly and within six months after transplant I was between stage 2 and stage 3.

I treated with interferon and ribavirin for 84 weeks and then relapsed post TX. It was pretty awful, but it turned out to be a great thing that I did the treatment. The great news was that 6 months after finishing the treatment, a liver biopsy confirmed that my liver disease had not only halted, but had reversed to Stage 0!

That was about four years ago. Since then, I have had yearly biopsies to monitor my liver condition. The disease is progressing again, but it certainly is progressing at a much slower pace than it did immediately after transplant. In these four years, liver disease had progressed only to Stage 2 (Metavir scale).

So, in my opinion, there could be plenty of good reason to do the treatment if only in the hopes of arresting or reversing disease progression. It can buy time until there is a more effective treatment for HCV genotype 1 that will be safe for transplant patients.

My best wishes to your father-in-law, and to you for your care and concern for him.

Brent

[orphanedhawk]

Like my colleagues above have mentioned, a transplant does not get rid of hep C. After my transplant hep C returned aggressively.
Perhaps there was a misunderstanding in what the doctors actually said.

My transplant was in 2009 and I just finished treatment for hep C in March. So far the virus is still gone.

My advise is to read and re-read Hector's post.
It can take a full year to recover from a transplant.
Good luck to you and your family~

[kstxdaughter]

Thank you so much everyone for your posts.  I'm the daughter of the patient (Mellee is my amazing sister-in-law - Thanks for beginning this post!) and my dad is sitting right next to me.  I read him all your comments and although at first he didn't want to do the treatment, after having considered your input, he is more in favor of it.  Here are some questions he has regarding the treatment:

He is actually going to receive a triple treatment of
Peg, Ribavirin, and boceprivir.  (I actually misundertsood the Dr.s and thought it was either or, but he'll be treated with all three).
So the question my dad has for those of you who went through treatment:

1.) How severe were the side effects?  As Mellee mentioned, he is already very weak post-surgery - having trouble eating/tasting food, not having enough energy, and just being sad.  He actually tried the interferon treatment 10 years ago for 3 days and just gave up because it was too hard for him to handle.  His body just crashed and he was working at the time.  So that is his main concern.  I know that there is the danger of anemia due to decrease in RBC - so how was your energy level/quality of life?  

2.) As a family, we are wondering whether my dad will need constant care during the treatment.  My mom still works and no one's at home to help.  My aunt has been here from out of the country to help my dad these past three months post-surgery.  I asked the liver transplant coordinator and she said that the treatment shouldn't require extra care - but given the current state of my dad I'm wondering if we should prepare for one.

3.) If anyone else has had difficulty with eating/tasting food, please comment on if/when that changed.  What type of diet worked best for you?  I'll be home with my dad for the next two weeks just to focus on getting him stronger through diet.  I'm looking up lots of diabetic recipes.  In other forums I have read that taste gradually came back for many post tx patients.  My dad is longing to be able to enjoy food once more.

Thank you again so much for your inputs.  Hector, I LOVE you!  Hang in there.  I pray you'll get a liver soon.  I'm a teacher and every year I invite guest speakers to teach about the importance of donating organs to my students (who are all driving age) - I will continue to read up on this forum.  Best to everyone.  
K

[HectorSF]

1.) How severe were the side effects?  As Mellee mentioned, he is already very weak post-surgery - having trouble eating/tasting food, not having enough energy, and just being sad.  He actually tried the interferon treatment 10 years ago for 3 days and just gave up because it was too hard for him to handle.  His body just crashed and he was working at the time.  So that is his main concern.  I know that there is the danger of anemia due to decrease in RBC - so how was your energy level/quality of life?  

Having gone through waiting for and getting a transplant your father is tougher now then he was ten years ago when perhaps he had not faced any serious medical challenges. Plus work is out of the question for now. Also he is post transplant he and everyone around him must give him time to recover. He shouldn't try to do too much. Take it easy and slow. In time when he feels better than he will want to and can be more active. There is no rush. His slow progressive recovery is what is important now. Secondly the treatment will be phased in. The first for weeks he will be only treated with peg-interferon and ribavirin. This period will allow your father and his doctors to see how he responds to the treatment and if it impacts his health in any way. The number one focus will be on making sure that treatment does not impact negativity on his new donor liver. He will be monitored very closely using blood draws. If he has anemia and other issues with blood levels there are actions and treatments that will be done to manage these issues. This happens to many post transplant patients and the doctors are used to dealing with them. I have a few friends on hepatitis C treatment now post transplant, they have their good and bad days but let's remember that the purpose of treatment is to cure the hepatitis C virus infection that is causing the fibrosis of the donor liver. Saving that liver for more damage is paramount to your father's future health and life.

2.) As a family, we are wondering whether my dad will need constant care during the treatment.  My mom still works and no one's at home to help.  My aunt has been here from out of the country to help my dad these past three months post-surgery.  I asked the liver transplant coordinator and she said that the treatment shouldn't require extra care - but given the current state of my dad I'm wondering if we should prepare for one.

No one can say what side effect he may experience or how servere they might be. I always think plan for the worse and hope for the best. At a minimum I would plan for your father to be experiencing flu like symptoms and be quite fatigued. Remember many patients don't bounce back quickly after liver transplant. It takes time to recover from such a major operation. So it should be excepted that he will not return to full help for some time. He needs time to recover.

3.) If anyone else has had difficulty with eating/tasting food, please comment on if/when that changed.  What type of diet worked best for you?  I'll be home with my dad for the next two weeks just to focus on getting him stronger through diet.  I'm looking up lots of diabetic recipes.  In other forums I have read that taste gradually came back for many post tx patients.  My dad is longing to be able to enjoy food once more.

Many post transplant patients lose their appetites. This should be mentioned to his surgeon or whoever he is seeing at the hospital on a regular basis. The transplant clinic will have dietitians that you should consult with. If he isn't getting enough nutrients he may be told to drink Ensure or another concentrated drink with proteins and vitamins. The dietitians can give your father the proper diet for both his recovery from transplant and his diabetes. Talk to his outpatient case manager or surgeon about this issue and they will put you in touch with a dietitian. It is very important for your father's recovery for him to be an optimum diet so he can manage his health condition as best as possible.

I hope this helps.
Hector

[HectorSF]

3.) If anyone else has had difficulty with eating/tasting food, please comment on if/when that changed.  What type of diet worked best for you?  I'll be home with my dad for the next two weeks just to focus on getting him stronger through diet.  I'm looking up lots of diabetic recipes.  In other forums I have read that taste gradually came back for many post tx patients.  My dad is longing to be able to enjoy food once more.

Please see UCLA's "Adult Liver Transplant" web page at...

http://transplants.ucla.edu/body.cfm?id=64

They have posted the following documents regarding managing life post transplant.

Patient Information Brochures:

"Outpatient Case Manager's Educational Supplement for the Adult Liver Transplant Recipient"

"Life After Transplantation: Taking Good Care of Your New Liver"

"Life Goes On"

Also they have 5 Educational Modules–DIABETIC EDUCATION for adult patients who are diabetic following Liver Transplant:

Module One - General Overview of Treatment and Safety

Module Two - Self Blood Sugar Monitoring

Module Three - Diet and Nutrition + Recipe/Meal Plan Supplement

Module Four - Patient Responsibilities

Module Five - Long Term Self Care

Excerpt from Module Three - Diet and Nutrition + Recipe/Meal Plan Supplement...
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"DIABETIC EDUCATION MODULE THREE
DIET AND NUTRITION And RECIPE/MEAL PLAN SUPPLEMENT"

Dumont-UCLA Liver Transplant Center
Division of Liver and Pancreas Transplantation
UCLA Medical Center Department of Surgery

"Diet and Nutrition

The glucose intolerance or diabetes (high blood sugar) experienced by liver transplant patients is often caused by their medications.  If you had high blood sugars before your operation your medications may make your glucose intolerance worse.

BLOOD SUGAR METABOLISM

The food that you eat must be broken down into its simplest form or molecule before it can be absorbed into the blood stream.  Most of the food you eat is digested and broken down into glucose before it is absorbed into your blood stream.  Once in the blood we call it blood sugar, which is the main source of energy or fuel for your body.  As your blood sugar rises it
stimulates your pancreas to secrete a hormone called insulin.  Blood sugar cannot get into your body’s cells to be used as energy, it needs help from insulin.  Insulin acts as a key to help transport blood sugar into the cells where it is used as energy by your body to perform its daily functions.
After meals, when there is enough insulin secreted and picked up by the cells your blood sugar drops down to a normal level.  When there is a disturbance in the amount of insulin secreted and or absorbed by the cells your blood sugar remains high.  Insulin is the key to keep your blood sugar at the right level, but it doesn’t work alone.  You also need to plan
what and when you eat, maintain a good weight, and stay physically active.

General Guidelines

* Eat a variety of foods from all four food groups including pasta, whole grain breads and cereals; fruit and vegetables; dairy products; meat, fish and poultry.
* Three well balanced meals per day and an evening snack are  recommended.  If you are still below your optimum weight a mid-morning and mid-afternoon snack may also be recommended  (discuss this with your dietitian).
* Lose weight if necessary.  You can lose weight by decreasing the amounts of foods (portion sizes), using less fats and exercising more.
Eat at regular and evenly spaced times each day.  Avoid skipping meals or going without foods for long periods of time."...

http://transplants.ucla.edu/workfiles/adultliver/module3.pdf
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All this information should help you help your father post transplant.

Best!
Hector

[Mellee1209]

I just wanted to say I deeply appreciate all of your comments and well wishes. We are planning to discuss treatment options as a family this weekend and your input has been so invaluable. HectorSF- I hope and pray you receive your new liver soon!

[orphanedhawk]

I have a suggestion to help dad get the nutrition he needs.
Boil a whole chicken. Remove and save the meat for another dish, discard the bones. Add every vegetable you can think of. Simmer for another hour. Strain.
This will make a very nutritious drinkable broth.

Yogurt is a good too both for the calcium and the flora it provides.

There was a man on a transplant forum I frequent who was on interferon for a long time to combat hep C. It's possible they may start your dad's treatment slowly. If he becomes undetected while doing interferon, his liver may begin to improve quickly.

Best of luck~
OH