My Treatment, post transplant. (Hepatitis C / Liver Transplant (Hep C) HCV Blog)

Hi All,

As promised, here are the details of the research study I have been asked to participate in since having my transplant.


In essence it is a study to test the effects of Warfarin (anticoagulant and rat-poison!) and its effects on the Hepatitis C virus on post liver transplant patients like me.

The study is called the 'WAFT-C' study and has been organised by the Imperial College, London and is run in conjunction with St James Hospital, Leeds specialist liver unit.

They believe that Warfarin, a cheap and well used drug, stops the HepC virus from 'grouping' and attacking the new liver.

Below is a patient information sheet that was given to me when I was invited to take part in the study and I hope it is of interest and answers any questions about the treatment, as it did for me. I have 'cut, copied and pasted' it for your information

I will post more info as to how I'm doing as I go forward (maybe even another video diary post) and results of Liver Biopsies as I have them done.

Thanks to all, any questions please e-mail me at: riosbarandgrill@gmail.com

Take care everyone.... Ian

 
Anticoagulation for Liver Fibrosis in patients Transplanted for Hepatitis C Virus Infection (WAFT-C)

You are being invited to take part in a research study. Before you decide it is important that you understand why the research is being done and what it will involve. Please take time to read the following information carefully and discuss it with others if you wish. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part. Thank you for reading this.

What is the purpose of the study?

We have found evidence that the blood coagulation system contributes to the development of liver fibrosis (scarring) in patients with hepatitis. In patients with hepatitis C, who have had a liver transplanted a significant proportion develop accelerated fibrosis in their transplanted liver. We wish to find out whether anti-coagulation (thinning the blood) slows down the development of this re-fibrosis following transplantation. This is a study lasting for 2 years which will tell us whether anti-coagulation has any beneficial effect and provide us with further information regarding factors associated with liver fibrosis post transplantation.

Why have I been chosen?

You have been asked to participate because you have had a recent liver transplant and are still infected with Hepatitis C.

Do I have to take part?

It is up to you to decide whether or not to take part. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. If you decide to take part you are still free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect the standard of care you receive.

What will happen to me if I take part?

If you agree to participate at the beginning of the study you will be randomly allocated to one of two groups. One group will have anticoagulation in the form of a drug called warfarin. The second group will receive standard care post liver transplant care. The anticoagulation period will be 2 years.

We will organise a visit to take place one to three months after your transplant. At this visit blood tests will be taken and if you are allocated to the anticoagulation group, this will be started. During the period you are anti-coagulated you take warfarin tablets by mouth and we will monitor your blood carefully to make sure that the level of anticoagulation is correct. This will initially occur up to three to four times in the first week, and then weekly and subsequently monthly. Where possible will we try and coordinate these visits with your transplant clinic follow-up to minimize inconvenience to yourself. You will be followed up at 6 months, 12 months, 18 months and at 24 months to ensure there are no complications.

Liver biopsies will be performed in keeping with your routine care at 12 and 24 months following your transplant. The anticoagulation will be stopped 5 days prior to the biopsy, to allow your blood clotting to return to normal 24 hours before the biopsy. If no complications have occurred following the biopsy the anticoagulation will be recommenced 24 hours later.

A subgroup of patients will be invited to participate in a sub-study to evaluate non-invasive measures of liver fibrosis. A microbubble ultrasound of the liver and special MRI scan of the liver (MR spectroscopy) will be performed at 12 and 24 months and compared to the results of the corresponding liver biopsies.

What do I have to do?

Patients in the anti-coagulation group of the study will need to attend three or four times in the first week and then weekly and subsequently monthly for monitoring. During this period high risk sports such as mountaineering and downhill bike racing should be avoided. You should not take any aspirin or anti-inflammatory drugs and all new medications should be discussed with the study coordinator. There are no restrictions on normal activities, but one should minimize any changes to the intake of green leafy vegetables (spinach, greens and broccoli), green peas and oriental green tea. Drinking cranberry juice or taking other cranberry based products (capsules or concentrates) might increase the effect of warfarin in thinning the blood, and you should therefore avoid drinking or taking these products while taking warfarin. If you are female and become pregnant you would need to stop the medication and withdraw from the trial immediately.

What is the drug or procedure that is being tested?

Warfarin is a commonly used drug which reduces the formation of blood clots. It is frequently used for treating blood clots in the legs and pulmonary emboli (blood clots in the lung). When carefully monitored it is a safe drug which can be taken by mouth. The dose of the drug needs to varied from time to time in an individual to maintain effective but safe levels of anti-coagulation.

What are the alternatives for diagnosis or treatment?

At present there are currently no treatments available for treating accelerated liver fibrosis post liver transplant. Anti-viral therapy to eliminate the Hepatitis C virus is effective only in less than a third of patients. Re-transplantation is rarely an option. A treatment for liver fibrosis is therefore urgently required.

What are the side effects of any treatment received when taking part?

Warfarin does not normally produce any side effects. If the dose is too high then you may develop spontaneous bruising, bleeding from the gut or heavy periods. If these complications arise you should stop taking the medication and go immediately to the nearest casualty department and tell them that you are taking warfarin. Please contact St James Hospital Liver Unit, Leeds or Imperial College, London in the event of any problems
What are the possible disadvantages and risks of taking part?

Participation in this study may cause you some inconvenience and expose you to the small risk of over anti-coagulation. However, no other disadvantages can be anticipated.

Any woman who finds that she has become pregnant while taking part in the study should immediately tell her doctor.

What are the possible benefits of taking part?

We hope that the treatment will help you. However, this cannot be guaranteed. If there is some benefit then this may only last as long as you are taking the warfarin. The information we get from this study may help us to provide better treatment for you and other patients with liver fibrosis in the future.

What if new information becomes available?

Sometimes during the course of a research project, new information becomes available about the treatment/drug that is being studied. If this happens, your doctor will tell you about it and discuss with you whether you want to continue in the study. If you decide to withdraw your doctor will make arrangements for your care to continue. If you decide to continue in the study you will be asked to sign an updated consent form.

Also, on receiving new information your research doctor might consider it to be in your best interests to withdraw you from the study. He/she will explain the reasons and arrange for your care to continue.

What happens when the research study stops?

At the end of the study the anti-coagulation will stop. If the study shows potential benefit the warfarin may be continued under the guidance of your transplant clinic doctors.

What if something goes wrong?

Imperial College London holds insurance policies which apply to this study. If you experience harm or injury as a result of taking part in this study, you will be eligible to claim compensation without having to prove that Imperial College is at fault. This does not affect your legal rights to seek compensation. If you are harmed due to someone's negligence, then you may have grounds for a legal action. Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been treated during the course of this study then you should immediately inform Dr Charles Millson or Professor Mark Thursz, (contact details as above). The normal National Health Service complaints mechanisms are also available to you. If you are still not satisfied with the response, you may contact the Imperial College Clinical Research Office.

Will my taking part in this study be kept confidential?

All information which is collected about you during the course of the research will be kept strictly confidential. Any information about you which leaves the hospital will have your name and address removed so that you cannot be recognised from it. In addition with your approval we will contact your own General Practitioner to notify him or her of your participation in the trial. This is done to ensure that all doctors involved in your care are aware of all the treatments you are receiving.

What will happen to the results of the research study?

The overall results of this research may be presented at meetings and published in one of the medical journals; however your identity will not be disclosed.

Who is organising and funding the research?

This study has been initiated and organised by Professor Thursz and colleagues in the Department of Medicine at St. James University Hospital, Leeds and Imperial College. The study is sponsored by Imperial College and funded externally. There are no commercial interests in the trial.

Who has reviewed the study?

This study has been reviewed by the Royal Free Hospital & Medical School Research Ethics Committee.

Contacts for Further Information.

For further information please contact Dr. Millson or Professor Thursz (contact details above).

In emergency please phone St. James University Hospital Switchboard and ask for the Liver Registrar.

Thank you for reading this Patient Information Sheet. If you decide to participate, you will be given a copy of this Information Sheet and a signed Consent Form to keep. If you do decide to join the study, we would also like to thank you for agreeing to take part.

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BBC - Health: Hepatitis C

Hepatitis C - A Post by Dr Rob Hicks for BBC News

Inflammation of the liver - hepatitis - has many causes, including several viruses. One of these is hepatitis C. There is currently no vaccine to prevent infection, so it's important to be aware of it and avoid it.

What is hepatitis C?


Hepatitis C is an infection with the hepatitis C virus. Although there is no vaccine to protect against infection, there is effective treatment available.

Estimates suggest over 250,000 people in the UK have been infected with hepatitis C, but eight out of ten don’t know that they have it because they have no symptoms. Worryingly, about 75% of these people go on to develop a chronic hepatitis. But because it can take years, even decades, for symptoms to appear, many people (possibly 100,000 or more) remain unaware that they have the problem. By the time they become ill and seek help, considerable damage has been done to the liver. This might have been prevented if the person had been diagnosed earlier.

Elsewhere in the world, hepatitis C is even more common – the World Health Organisation estimate that three per cent of the world’s population (about 170 million people) have chronic Hepatitis C, and up to four million people are newly infected each year.

Symptoms

In most cases, the initial infection doesn't cause any symptoms. When it does, they tend to be vague and non-specific.

Possible symptoms of hepatitis C infection include:

•Fatigue

•Weight loss

•Loss of appetite

•Joint pains

•Nausea

•Flu-like symptoms (fever, headaches, sweats)

•Anxiety

•Difficulty concentrating

•Alcohol intolerance and pain in the liver area

The most common symptom experienced is fatigue, which may be mild but is sometimes extreme. Many people initially diagnosed with chronic fatigue syndrome are later found to have hepatitis C.

Unlike hepatitis A and B, hepatitis C doesn't usually cause people to develop jaundice.

About 20-30% of people clear the virus from their bodies - but in about 75% of cases, the infection lasts for more than six months (chronic hepatitis C). In these cases the immune system has been unable to clear the virus and it will remain in the body long term unless medical treatment is given. Most of these people have a mild form of the disease with intermittent symptoms of fatigue or no symptoms at all.

About one in five people with chronic hepatitis C develops cirrhosis of the liver within 20 years (some experts believe that, with time, everyone with chronic hepatitis C would develop cirrhosis but this could take many decades).

Causes and risk factors

Hepatitis C virus is usually transmitted through blood-to-blood contact. One common route is through sharing needles when injecting recreational drugs - nearly 40% of intravenous drug users have the infection and around 35% of people with the virus will have contracted it this way.

Similarly, having a tattoo or body piercing with equipment that has not been properly sterilised can lead to infection.

Before 1991, blood transfusions were a common route of infection. However, since then all blood used in the UK has been screened for the virus and is only used if not present.

Hepatitis C can be sexually transmitted, but this is thought to be uncommon. It can be passed on through sharing toothbrushes and razors. It is not passed on by everyday contact such as kissing, hugging, and holding hands - you can't catch hepatitis C from toilet seats either.

If someone needs a blood transfusion or medical treatment while staying in a country where blood screening for hepatitis C is not routine, or where medical equipment is reused but not adequately sterilised, the virus may be transmitted.

Most people diagnosed with hepatitis C can identify at least one possible factor which may have put them at risk but for some, the likely origin of the infection isn't clear. Because it can remain hidden and symptomless for so many years, it may be very difficult to think back through the decades to how it might have begun.

There are a number of ways to reduce the risk of the infection being transmitted. Those most at risk of contracting the infection are injecting drug users, who should never share needles or other equipment.

Practising safe sex by using condoms is also important.

People with hepatitis C infection aren't allowed to register as an organ or blood donor.

Treatment and recovery

People with chronic hepatitis C infection should be seen by a hospital liver specialist who may recommend antiviral drug treatments either as single drug therapy or as combination therapy.

Whether treatment is needed, and if so which type, depends on a number of factors. These include blood tests to identify which strain of hepatitis C infection is present and how well the liver is functioning, and a liver biopsy to establish whether cirrhosis is occurring.

Hepatitis C can be treated with pegylated interferon alpha and ribavirin. These drugs offer the best chance to clear the virus from the body, and are often used together as dual or combination therapy which has been shown to be effective in 55% of cases. Some strains or genotypes of the Hepatitis C virus are more likely to respond than others. Even if the virus isn’t completely cleared, the treatments can reduce inflammation and scarring of the liver. They may, however, cause side effects that some people find difficult to tolerate.

Many people also find that complementary and lifestyle approaches help – there is little evidence that these can reduce levels of the virus but they may help to deal with symptoms and improve quality of life.

If you think you could have been in contact with the hepatitis C virus at any point in the past, you can have a test to find out if you've been infected. You should ask you GP. Local drug agencies and sexual health clinics (sometimes called genito-urinary medicine or GUM clinics) may also offer testing.

Disclaimer

All content within BBC Health is provided for general information only, and should not be treated as a substitute for the medical advice of your own doctor or any other health care professional. The BBC is not responsible or liable for any diagnosis made by a user based on the content of the BBC Health website. The BBC is not liable for the contents of any external internet sites listed, nor does it endorse any commercial product or service mentioned or advised on any of the sites. See our Links Policy for more information. Always consult your own GP if you're in any way concerned about your health.

Dr Trisha Macnair last medically reviewed this article in February 2009.

BBC - Health: Hepatitis C

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Hepatitis C Virus Damages Brain Cells

News > 2010 > October > Hepatitis C Virus Causes Brain Inflammation Leading to Neuron Injury



Hepatitis C Virus Causes Brain Inflammation Leading to Neuron Injury


SUMMARY: Hepatitis C virus (HCV) can breach the blood-brain barrier and infect support cells in the brain, triggering inflammatory changes that ultimately result in damage to neurons, suggests new research published in the open access online journal PLoS One. Findings from this autopsy study may help explain how HCV infection causes neurocognitive impairment, including the poor concentration and memory problems commonly referred to as "brain fog."

Below is the text of a press release issued by the University of Alberta describing the study findings.

U of A Medical Research Team Discovers - Hepatitis C Virus Damages Brain Cells

Edmonton, Alberta -- October 7, 2010 -- A University of Alberta researcher specializing in neurological infections has discovered that the hepatitis C virus injures and inflames brain cells, resulting in neurological issues for some patients living with the disease. Until now, no one has been able to prove this.

A recent Canadian study suggests that 13 per cent of people with hepatitis C, a chronic condition that affects 300,000 Canadians, also have neurological problems. Other research has suggested the hepatitis C virus might penetrate the blood-brain barrier. Chris Power, the Canada Research Chair in Neurological Infection and Immunity with the Faculty of Medicine and Dentistry, and his team decided to tackle this theory conducting experiments on human cadavers.

"We saw the virus in the brain of a deceased patient who had hepatitis C," said Powers, who noted that normally it is very difficult for any type of virus or infection to pass the blood-brain barrier. Based on this discovery, the researchers made three new and major findings. The hepatitis C virus damaged those neurons in the brain responsible for motor functions, memory and concentration. The virus also triggered inflammation of the brain, which contributed to more neurons being damaged. And, thirdly, the virus stopped a natural process in the brain cells called autophagy, in which the cells get rid of unwanted toxic proteins. So, instead, the brain cells were accumulating large amounts of these toxic proteins, causing further damage to the brain cells.

"For a long time, the medical community has recognized some people who have hepatitis C also have memory loss and poor concentration, which is very disabling for those patients," says Power. "Now we have some understanding about the cause of these neurological symptoms that can lead to the development of future treatments for people with hepatitis C."

"This discovery is significant because this is the first time anyone has confirmed that the hepatitis C virus can infect and injure brain cells."

The research conducted by Power and his team was funded by an Emerging Team Grant from the Canadian Institutes of Health Research. He collaborated with Babita Agrawal and Jack Jhamandas, both of the U of A, and Chris Richardson of Dalhousie University in Halifax. The discoveries by Power and his team were just published in the prestigious Public Library of Science (PLoS) One journal.

10/15/10. Source - R Maurier, University of Alberta. U of A medical research team discovers hepatitis C virus damages brain cells. Press release. October 7, 2010

http://www.hepctrust.org.uk/

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Camping!

Hi-De-Hi  (Ho-De-Ho I hear you shout!?!)

Pictures of Mandy and the kids from our camping trip last weekend with Emily's school - Great Fun!

Matthew hogging centre-stage as usual.... a chip off the old block I do believe!

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A joke from my sister

My sister sends me some rubbish jokes on email from time to time, here's another...

Golf Panties....


An Englishmans' wife steps up to the tee and, as she bends over to place her ball, a gust of wind blows her skirt up and reveals her lack of underwear.

'Good God, woman! Why aren't you wearing any skivvies?', her husband demanded.

'Well' she said, 'you don't give me enough housekeeping money to afford any.'

The Swede immediately reaches into his pocket and says, 'For the sake of decency, here's a 50. Go and buy yourself some underwear.'

Next, the Irishman's wife bends over to set her ball on the tee.

Her skirt also blows up to show that she, too, is wearing no undies. 'Blessed Virgin Mary, woman! You've no knickers. Why not?'

She replies, 'I can't afford any on the money you give me.'

Patrick reaches into his pocket and says, 'For the sake of decency, here's a 20. Go and buy yourself some underwear"!

Lastly, the Scotsman's wife bends over. The wind also takes her skirt over her head to reveal that she, too, is naked under it.

'Sweet mudder of Jaysus, Aggie! Where ta friggin hell are yer drawers?'

She too explains, 'You dinna give me enough money ta be able ta affarrd any.'

The Scotsman reaches into his pocket and says, 'Well, fer the love 'o decency, here's a comb....tidy yerself up a bit"!

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