Q A relative of mine recently had a liver transplant at the Royal Free, due to cirrhosis caused by colitis. He had a post operative MRSA infection and then some serious rejection problems which have damaged the new liver. He is now back in hospital waiting for another liver. I know this is difficult to estimate but am I right in thinking that surviving one liver transplant is difficult, but surviving two (assuming he gets another one and is able to have the op) is probably a long shot? Please don't sugar the pill.
I know this question is a bit cheeky as the cause of the cirrhosis was not hep C but the transplant issues will be of interest to hep C patients whatever the cause. And I am a Hepatitis C Trust Patient Association member myself.
A This is an interesting query and not a cheeky question. It is always difficult to comment on an individual case when one does not have all the clinical details. However patients who need to have a second liver transplant often do as well as having one transplant. This is particularly true if liver function early post transplant is significantly compromised. It also depends on how fit the recipient is and their other ongoing medical conditions eg infection. This is a difficult area. Overall the biggest concern is the scarcity of donor livers and the significant amount of patients waiting on the transplant list and getting sicker as they wait. I hope this is helpful.
Liver transplant and drug/alcohol use
Q I would like to ask what the protocol is for being eligible for a Liver Transplant if you are still drinking alcohol or using illicit substances either orally or intravenously?
A This is a very difficult question. First point- there are not enough donor organs and approximately 20% of people waiting for transplants die on the list. Second point - on a societal perspective the transplant community needs to consider the 'best use' of any organ as it is a scarce resource. Thus any individual needs to optimise their potential outcomes and lifestyle factors such as alcohol and drug misuse, which might impact adversely, need to be considered. This does not detract from our consideration that alcohol and other dependencies are considered diseases not just choices. Transplant units are not judgmental but as a team have to make very hard choices. For example, in the UK, the transplant units look for 6 months abstinence from alcohol as it may be a marker of longer term abstinence and indeed liver function in this period might improve enough to negate the need for transplant. Data suggests that alcohol misuse post transplant does affect longer term outcomes. Additionally drug misuse exposes individuals to other medical and infective complications.
This is a very complex ethical and philosophical arena. Personally, clarity of discussion about alcohol and other misuse around the time of presentation or assessment is critical and my personal view is that individuals with cirrhosis should drink no more than minimal alcohol or actually abstain. We are currently actively debating these and other allocation issues within the UK transplant community. It is worth reiterating that this is a complex issue. Good question.
Immunosuppressants post Liver Transplant
Q My husband had a transplant in 2000 and takes Sirolimus. He has had recent therapy for HCV and is now considered 'clear' of the virus. I have read that some centres are weaning their patients off immunosuppressants. What is the research telling us about transplant patients weaning off their immunosuppressants and what is your view?
A Interesting question. Hepatitis C recurrence post transplant is a major problem and actually my area of interest! Sirolimus is a newer immunosuppressant and 1 transplant unit in the UK favors its use in HCV. It is good news that he is clear. All patients post transplant need to have their immunosuppression monitored with a tendency to wean as the long term side effects of immunosuppression are significant (i.e. diabetes, renal failure). Furthermore the liver is an amazing organ and much more tolerant than other organs. Increasing research evidence suggests that the liver has a critical role in immune responses. You will be interested to know that up to 20% of patients post transplant can come completely off their immunosuppression (in a very well monitored environment). That said, please don't try at home!
Reduced incidence of HCC (liver cancer) post treatment
Q Successful treatment for Hep C is supposed to reduce the incidence of HCC & Lymphoma etc. Does this mean that the risk is about the same as if you had never had Hep C, or just less than it would be without treatment? Also, does treatment predispose a person to any other type of cancer, due to the toxic nature of the drugs used to clear the virus? I'm a geno 3a, undetectable 6 months post treatment.
A Good question. Congrats so far on your good result. There is increasing evidence that clearance of HCV stops liver disease progression and thus decreases the risk of HCC but the data is quite hard to interpret. If you have cirrhosis and are clear the risk is decreased as we now think that 'fibrosis' may be more 'plastic' i.e. reversible than previous thought. This is an interesting change in viewpoint for hepatologists. So the decrease in risk depends on whether an individual had cirrhosis. Someone with HCV who is non-cirrhotic does not have an increased risk compared to the general population. No, as far as I'm aware, treatment does not predispose you to other cancers. Hope this helps
Post Transplant - Weaning Off Immunosuppressant Drugs?
Q Is there a reference, or person, that I can refer my consultant to about weaning off immunosuppressants post transplant? Transplant was in 1999. After 5 years of Cyclosporin I was moved to Sirolimus because of potential renal problems. Now the Sirolimus is causing high blood pressure and anyway all these drugs are quite potent - one doesn't want to take them indefinitely if there is an alternative. I think that my consultant would need reference and support to consider weaning me.
A I want to be clear on this. Immunosuppression is vital to the vast majority. In the vast majority weaning/ stopping immunosuppression can lead to rejection and graft loss. Yes these drugs are potent but it is not trite to say they are 'life savers'. Post transplant we have to juggle immunosuppression to minmise side effects and this is why you have gone on to Sirolimus. It has a different side effect profile but is a very good drug. The '20%' I alluded to previously is from an old paper from Kings. Rather than a period off immunosuppression I would advocate following your medical team's advice. Gradual cautious reduction might be considered but in an expert, carefully monitored environment. Your consultant and team will know your case best and I would follow their management plan completely.
Hypertension post transplant
Q Where hypertension (150/106) is the result of immunosuppressants, are there any natural remedies you have seen work? I am eating a veggie diet and doing yoga twice weekly (started a month ago). I'm trying to avoid taking yet more medicine. Is it the case, as I have read, that blood pressure medicine will hide the symptoms but won't actually contribute to making me live longer post transplant?
A Hypertension is probably related to your immunosuppression and after healthy living and other lifestyle adjustments (i.e. not smoking and being overweight) treatment is appropriate. This feeds back to my previous response where immunosuppression (which is vital in the vast majority and stops the liver being rejected) can come with the 'cost' of some associated side effects. Controlling your blood pressure decreases the risk of having strokes and heart attacks in the long term (just like non- transplant patients) and antihypertensives are clearly effective and do not 'hide anything'
Average waiting time for liver transplant
Q Do you know the average waiting time for a liver for transplant for hep C patients?
A It depends on the blood group. Waiting lists across all blood groups and transplant centres have increased significantly in recent years. Whether a person has hep C or not has no effect on the waiting time.
Permanent damage post treatment
Q The side effects of combination therapy for Hep C appear quite drastic in some people. Can it cause any permanent damage to ones body? Thank you for your time.
A Good question! It is very difficult to predict who will have significant side effects from treatment and who will sail through. Nearly all common side effects resolve over a period of time after cessation of anti viral therapy. However peg interferon can uncover auto immune phenomena such as thyroid disease and occasionally joint related problems such as arthritis. These sometimes require ongoing assessment and treatment. By and large nearly all side affects resolve and I would always encourage suitably assessed patients to consider a trial of therapy.
Hormone problems on treatment
Q I am 3 weeks into the treatment for Hep C. One of the side effects I have is my hormones are really upset, such as breakthrough bleeding, feelings of PMT nature. Is this likely to continue? And if so is there anything I can take (complementary or orthodox) which will alleviate this. Surely it cannot be good for my red blood cell count to be bleeding all the time?
A A good question but a difficult one. Side effects are difficult to predict and individuals are very different. I agree that these are significant side effects and I would suggest you mention them to your treatment team. Perhaps it may be co-incidental, or warrants a formal hormone screen and Gynecological opinion. It may settle as you are more established on therapy. I hope things improve, stick with it.
Lichen planus flare up on treatment
Q I was diagnosed 2 years ago (at the same time as hep c) with lichen planus on my tongue. After two years the patches had nearly gone completely but since starting the treatment they have flared up again is this normal and is there anything that can be done to stop the flare up.
A Lichen Planus is a difficult condition. It can be problematic to treat. It can be a manifestation of hep C or related to treatment. As far as I can recall, it is a manifestation of autoimmunity but the formal aetiology (cause) is unknown. Topical steroids can be helpful but to be honest, in these situations, I am not afraid to ask advice from Ear, Nose and Throat specialists. Good luck
Starting treatment-problem with swelling
Q I have HCV, Genotype 3 (over 30 years now) and I am contemplating starting treatment in January. One of the possible symptoms I have which my specialist has not come across before is that my right side (foot, thigh, arm, shoulder and back) feels slightly larger than my left. It is not painful or swollen so much as to be visible, but is uncomfortable and a real problem with regard to getting clothes and in particular shoes to fit properly. From reading I have done I imagine it could be a problem with the lymphatic system. I was wondering if this was anything you had come across?
A Interesting question. I would still have a go at treatment. Genotype 3 is eminently treatable so I would try and 'stick with it'. It may be worth mentioning to your treatment team who might consider ultrasound of the pelvis. One might speculate that reactive lymph node swelling could be a potential explanation
Drug use and access to Hep c treatment
Q Does illicit substance use prevent a potential client with Hep C from accessing specialist treatment (i.e. access to Pegylated Interferon)? By use I mean occasional use on top of a maintenance prescription.
A Another good question. I would advise against anything that might impact on optimising outcomes with treatment. We know that compliance with therapy and lifestyle issues are important. My advice would be to optimise methadone support prior to consideration of treatment as occasional illicit use may be viewed as a marker of a chaotic environment and thus impact negatively. My personal feeling is that the patient and medical team should work together to get the best outcome and both parties need to commit to treatment.
Starting a family after Hep C treatment
Q I am concerned about starting family six months after finishing treatment. Is it true that this treatment doesn't cause birth defects after six months? Is there any research going on at this issue? Are women safe to start a family six months afterwards without any complications?
A The evidence is scanty but generally the theoretical risk of ribavirin related birth defects is low. It is difficult as the evidence is extrapolated from animal studies. My advice is that after six months off treatment I don't think there are major concerns regarding trying for a family.
Q I am wondering if there are many patients who show infection with 2 genotypes?
A This is not something I have come across. Instances of individuals being treated, reinfected and then having another viral genotype have been documented. It has been reported in patients with HCV who have had HCV infected transplants [not liver] (but this is not a population to generalise from!)
Clearing the virus without treatment
Q I was wondering if you have come across any/many patients who have cleared the virus without doing interferon/ribavirin treatment? At this stage I have chosen not to treat with the exception of certain natural supplements which have helped my fatigue enormously.
A None I'm afraid! Once you have chronic Hep C it is difficult to clear spontaneously. As a physician I would advocate consideration of treatment after assessment and discussion with your medical team.
Post treatment issues
Q I notice that many people take a long time to recover from combo therapy & some consultants expect you to be back on top form very quickly. I'm particularly concerned about the mental/emotional aspects, because very little support is available & it can be very disheartening when you are being told that you should feel well after a few weeks. Your opinion on this issue would be very welcome.
A Good question. Our assessment of non- measurable side effects as medical professionals is poor. It is easy to monitor numbers but hard to assess effects. There is some evidence to show that HCV patients are more likely to have fatigue, have worse fatigue after treatment and may be more prone to depression. We don't know whether this is related to the virus, to the populations that get HCV or specific neuro-cognitive manifestations related to treatment.
Furthermore, as you will know, we have little in the way of specific therapies and this is clearly problematic. I agree this is an area we need more support/ resource and research to address these common and significant problems pre and post treatment. Thank you for your relevant question.
Perennial Alcohol Question
Q I understood that when I had hep C I had to drink no alcohol. Fortunately I was treated successfully and have been clear now for two years. My pre-treatment biopsy showed moderate liver damage. Is it safe for me to drink now, within the CMO guidelines on units that apply to everyone, or must I consider my liver less able to tolerate alcohol even though I don't have hep C any more?
A Congrats on your response. I don't know if there were any others co-factors contributing to damage on your biopsy. Overall I would suggest you enjoy your tipple of choice up to 10-12 units a week i.e. don't be a monk but don't go crazy!
Post Treatment Symptoms - Severe joint pain
Q I was treated successfully for hep C but was left with quite severe joint pain that has persisted for more than two years.
I was discharged from the hep C clinic back to my GP who referred me to a rheumatologist. There was no communication between the hep C clinic and the rheumatologist. You would think that the doctors treating hep C would want to follow up on the long term side effects of the drugs they use. I was surprised by their lack of interest. What are your thoughts?
A My perspective is that if you have joint problems you are best off seeing a specialist. This is particularly appropriate when you have had a successful response to treatment. Congrats on this. Unfortunately communication can always be improved in medical matters and we must not forget that your GP is your primary doctor who knows your case best.
Q Yes - But many GPs know little or nothing about hep C treatment.
A You are right. That is why it is beholden upon both doctors and patients to educate themselves, medical professionals and society in general.