hello from Virginia

Hi everyone, I work for a patient support organization in USA and am 52 years old. Currently I am working on setting up a registry for liver cancer, plus some educational information initiatives for viral hepatitis and NAFLD. I hope I can be of some help to the community and will share whatever information I can. Best wishes to everyone whatever your fight - knowing all your options and sharing your experience is always for the better.

[Hidden]

Pleased to hear about your initiative and your willingness to share. Why do we need to think of dealing with cancer as a "fight", however? I was diagnosed with liver cancer and had a transplant in 2011 but at no time was I involved in a fight. I was treated by dedicated professionals and supported by the love and encouragement of my wife and family while working to stay as well as possible. The military metaphor does not work and can be discouraging for people who don't feel brave and appalling for those who succumb to their illness.

[carmik in reply to Hidden]

Hi

Unfortunately we did have a bit of a fight (maybe not the right word).

We were told for months that my husbands liver was not bad enough for a transplant.

He was even turned down in July 11. He soldiered on getting more and more ill. By August 11 ,on the reports of his two hepatologists he was reconsidered without a further week of tests and accepted. In Dec 11 he was transplanted. On explant he was found to have over of ten primary liver tumours, which, had the Alfa Feta Protein test showed this he would have been turned down for transplant and would have been dead very quickly.

He got away with a transplant because a small proportion of patients do not show a rise in AFP, which did him a favour.

So maybe not the right word to use but to us it was a Fight to get accepted.

[Hidden in reply to carmik]

Hi, thanks for sharing, it sounds like you and your husband overcame a lot of obstacles and challenges on the way to getting a transplant. Unfortunately there are never enough livers to go around so many people who would be helped by a transplant cannot get one, and getting accepted is not guaranteed. Hopefully we can find solutions to this problem in the future. Best wishes to you both ~ Rolf

[RodeoJoe in reply to Hidden]

I think the word fight is well intended.

However I do agree that words like fight, brave, strong whilst great for newspapers headlines, does suggest the opposite for those who are not responding so well to treatment.

However as this advert suggests it's not just patients who are fighting cancer, and other terrible diseases, for every patient there are fundraisers, charities, carers, Dr's, Surgeons etc. I'd struggle to find a better word.

youtu.be/pxOVmfIrAi4(Not working as expected?)

[Hidden in reply to RodeoJoe]

working?

[RodeoJoe in reply to Hidden]

Doesn't do it for me but each to their own I guess.

[Mama41 in reply to Hidden]

Yes I totally agree. I wouldn't call it a fight. It's just something I deal with.

I'm not brave,strong etc I'm just trying to get a few more years so I can be around to see my children grow up.

[Hidden in reply to Mama41]

Hi, yes I understand what you mean. People say I am brave coping with losing someone very close to me but all I can say is that I really do not have any choice, so its not bravery its reality.

[Hidden in reply to Hidden]

Thanks for your comments Mike. It's really good to hear that you had such a positive experience after your diagnosis and subsequent transplant You really gave me some food for thought. I think that one thing we can all agree on is that one size does not fit all when it comes to care and how we think about improving care, and that also applies to the tone of communication.

[Bermuda1]

May I ask which patient support group you are working for ? Also have you got some info I can look at investigate further. Thank you.

[Hidden in reply to Bermuda1]

Hi Bermuda1, hope you are having a good week. you can see some general information about GLI at facebook.com/GlobalLiver and globalliver.org I hope you find it useful

[Bermuda1 in reply to Hidden]

Thank you, looks interesting , I see 3 people I know are using your FB page. I just find it a little frustrating , that again there seems to be a high amount about Hep C , and not all the other, over 100 causes. I know Hep C and Harvoni are big press at the moment , and there are an emormous amount of people that have Hep C and need Harvoni , if they have not got it already. There just needs to be some balance back now.

[Hidden in reply to Bermuda1]

HI I live in Scotland

The Scottish government also has a policy off elimination. In fact I got sick last year when I was visiting relatives in north west Staffordshire. I checked in to a local NHS Hospital, the hepatoligst there recommended that I go back to Scotland where i would get the treatment. at that time Harvoni was not avalible from the NHS in England.

As the Harvoni treatment didn't work, geno type 3a, I had a transplant on 14/12/15 at Edinburgh Royal Infirmary, OK I was in hospital on Christmas day, but now I expect to see at least 20 more Christmases, and the care I received was first class if you're reading this Kimberly pink is a wonderful colour and feeling. I also cannot over state the love and gratitude for my wife Norma who put aside her life to be with me God bless her. but back to the relative merit of care in the US and the NHS systems. The NHS is the crown jewels of British Socialism that is why the Torys hate it and are determined to erode it away. We must fight to keep it hospitals are already under staffed, and some of the Tory reforms have merely crated more bureaucracy, and really ought to be undone. I mean transfer pricing and an internal market in what ought to be a unified system Nye Bevan must be spinning in his grave. If you don't know who Nye Bevan was that is a result of Tory interference in the education system. Not that all of the problems with the NHS can be laid at the door of the Torys, Tony Blair did a massive amount of damage with his PFI initiative the hospitals built under this scheme are cheap and nasty structures we will be replacing them in 30 years time. By then where will we get the money?

[Hidden in reply to Hidden]

Hi Boab, and happy new year. Best wishes also with recovery from your transplant procedure still so recent. I share your observation that conservatives dislike public health programs on principal, because on both sides of the pond they represent "big government" rather than leaving the market provide. But we know that the market fails, and even when it succeeds the cost is probably higher due to the tiers of administration and profit taking created by insurance. We Brits can also recall that the NHS was created out of the repercussions of WWII where billing the injured would have been ridiculous and so free-at-the-point-of-care was established as a priceless principal. No such necessity has been a catalyst for change in the US. We now see the debate about single payer vs private here is US where Mr Sanders reminds us that education, road infrastructure and medicare are all essentially "socialist" and should not be demonized. It's clear to me that the HCV curative treatments are miraculous and a landmark in the development of new medicines, they came about as a result of public seed investment (NIH grants) and then big corporate finance to take them to market (biotech and pharma) with a huge investment that could not have come from the public sector. Perhaps this shows us that private finance is best applied to products, but for overall care the NHS model, underfunded though it is, is the best. Thoughts?

[RodeoJoe]

Hi, great to have you on board. Interesting to hear the American perspective. Really interested as to how healthcare works there as we have the public NHS, and the private system you have there is probably misunderstood by most of us.

[Mama41 in reply to RodeoJoe]

I lived in the States for 10 years so have experience of both Health systems and in my humble opinion the NHS is much better than the US system.

[Hidden in reply to Mama41]

Overall the statistics say the NHS is better for patients in terms of outcomes, but many US people hate the idea of government controlling health. Except for Mr Bernie Sanders of course!

[Hidden in reply to RodeoJoe]

Hi RodeoJoe, its certainly a really interesting contrast. The closest thing to NHS that US has is the VA (Veterans Affairs) Hospital System, which provides healthcare to military veterans, and like the NHS there are frequent concerns about funding levels and the overall quality of care.

For the majority of working people in US healthcare is delivered by good quality hospitals who bill for every single thing, and your insurance company picks up most of the bill, although like car insurance there tend to be limits and deductions that you have to cover. Hospitals race to invest in the best equipment they can to attract patients, so in cities there is a lot of competition, less so in rural areas.

Overall the quality of care is good, but accessing that care is harder and more complicated than with NHS, and the overall cost to the country is about double what it is in UK (as a % of GDP). Many people don't get preventive screening because of the fear there will be a bill attached. And often a primary care provider will order tests for something and then find that the insurance company will not cover it, so the cost is passed back to the patient. When this is expensive and comes as a surprise it can cause hardship, and can be a deterrent to seeking care which may lead to late diagnosis of illness. Insurance companies have a lot of power. They can approve or deny treatment even if your doctor thinks it is the thing you need. So there is a lot more to think about during treatments because you may need to wait for approval, and then appeal a denial, before you can access that treatment. Cost control affects us all!

[cityman62]

This,I fear,is where we in the UK are being gently steered towards,big private insurance companies with intimate contacts to the party in power-consultants/advisors etc,'relieve the tax payers burden' etc,basically George Orwell speak.Exclusions/pre-existing conditions etc,etc.Truly 'A brave new World'......

[Hidden in reply to cityman62]

Hi Cityman62 I am very interested to hear about changes to the structure and system of the NHS, it has its critics but overall it seems to be a more efficient and fair way of delivering care (via a single organization) than the fragmented insurance based system. Although tax rates are lower in US, employers have to find money to pay for health insurance as a benefit, or people buy their own and its not cheap. One way or the other, health has to be paid for, so why not choose the most efficient way possible to do it? The pre-existing conditions issue has been improved somewhat here as a result of Obamacare legislation making it a rule that insurance companies must accept pretty much everyone. But that can only work financially if everyone is insured. I hope that the NHS can retain its structure and keep everyone happy too. Can you tell me if people with Hep C are getting access to the new curative medications? Over here it's been hard for patients with Hep C to get the medication unless they have advanced to quite late stage fibrosis or cirrhosis, which is not ideal and seems to be very much financially motivated.

[cityman62 in reply to Hidden]

Hi,Rolf,it's a bit different now for us in Wales,we have (extremely)limited,self- government,which in the health field,means we don't shadow the health system in England anymore.For instance,no prescription charges in Wales anymore-£8.20? In England.The Welsh government ring-fenced £14 million for hep c treatment recently-harvoni+riba if needed-rolled out-in order-cirhossis,then fibrosis,then into the 'wild' drug-using community,a well thought out plan,not only to save lives,but the end game is to snuff out hep c totally. Initially we in Wales were deeply suspicious of yet another layer of civil servants/beaurocrats etc.However,now we seem to see tangible benefits-the transplant decision in Wales-I believe is massive,also the decision to outlaw smoking in vehicles with children present.So far,so good I think,best,Andy.

[Hidden in reply to cityman62]

Hi Andy that is very interesting how Wales has been able to make such big and impactful policy decisions. The culture is so different here, I think that an opt-out system for organ donation would be seen as an encroachment on freedoms, a bit like a significant number of people see vaccination programs. But it completely makes sense from a big picture perspective. I think that countries who successfully take that approach can lead change in other countries by showing it works, so good luck and let's hope it is indeed catching on...someone has to be first and someone has to be last. I've been quite surprised how quickly things have changed over her for smoking though, and in quite a short space of time bars and restaurants are now smoke free although I am not aware of a specific rule on cars and children. I think when government looks at the cost of COPD from smoking or the cost of liver disease it indicates that you have to make policies that make a difference, or these diseases can bankrupt the system through expensive chronic illness. All that is good for the patient too.

[cityman62 in reply to Hidden]

I think NHS England views the Welsh innovations with interest and also some suspicion at times.There are downsides,In Wales waiting times for operations,Cancer treatments etc are worse than the U.K.average.Also one wonders whether the lack of a prescription fee deprives the service of much needed funding.Saying that the whole UK system is buckling at the knees-a+e waiting times can often exceed 4 hours.Locally,living in a rural location- though on the edge of a large university town with 6 large G.P. groups,it's almost impossible to get a routine appointment sooner than within 3 weeks.When you walk into the surgery which will say seat 60 patients-expecting to see clamouring hordes of would be patients,there will be,say,5 people waiting-its obviously a lack of Doctors issue.Its heartbreaking to see a system prized and valued by all crumbling around the edges.

[Estiebargle]

Hi there. I was a Proud Oregonian for 16 years, now in NZ. I have both NAFLD & Hep C. You mentioned educational material. Do you have links?

I contracted the Hep from the USA, almost 20 years ago. Recently diagnosed with NAFLD but working on lifestyle choices.

Welcome, this site is amazing. From a patient perspective it helps talking to people who speak the same lingo. (ALT, AST, LFTs, AFP, GGT.. Viral load, logs, fibro scan ect.) It's a great place to come and discuss our conditions, symptoms, and experiences with services & the medical system.

[Hidden in reply to Estiebargle]

Hi Estiebargle, you are a long way away in NZ! Thanks for your reply. I'm happy to have found this site too, and that it is Made in Britain! It's great to hear that you are finding it helpful and valuable and its great that people can easily share their experiences and insights.

Our materials are in development at the moment but I can point you to some that we really like at Mayo Clinic:

Hep C: mayoclinic.org/diseases-con...

NAFLD: mayoclinic.org/diseases-con...

I'll post on here when our projects in development are available. One of our current projects is create resources to help liver patients find ways to "Lighten Your Liver Load". This is because having more than one liver condition adds to the overall burden on the liver and affect the speed of progression. We hope that this will lead to ways of identifying at risk patients by asking them to calculate their liver load and encouraging people to get screened.

Hope you have a great day

[Bolly]

Hi Rolf. Have you looked at the educational material available via the British Liver Trust website? Can you tell us how your material will differ, or add to that available from Mayo for the USA and BLT for the UK? Also can you explain in a bit more detail what your "registry" for liver cancer (presume you mean Primary not Secondary) will be. Thanks.

[Hidden in reply to Bolly]

Hi Bolly, hope you are doing well today. I'lll take a look at the materials at the British Liver Trust and give some feedback later this week. Liver cancer is a big area of focus for us and so some of our materials will be focused on liver cancer and risks for liver cancer. Patients who have had liver disease and are now at an elevated risk of liver cancer are a particularly important group for us because we see liver cancer rates rising and we need to understand why. We also need to be able to give better and clearer information to these patients (e.g, viral hepatitis, fatty liver, alcohol) as to what their actual risk is. Hence the registry - we want to track patients and try to understand why some develop liver cancer and some don't . Even at the genetic level by taking tissue samples and tumor samples. So what we are planning is a registry AND biorepository, as the scientists call it - a very big freezer!

[Bolly in reply to Hidden]

Hi again. Will your register be worldwide or just patients in the USA? Will it be patients with HCC or Fibrolamellar as well. Will it be patients with active cancer or patients who have survived treatment options?

[Hidden in reply to Bolly]

Hi Bolly

Registry will be worldwide - UK center will be Imperial College, with other centers to be identified. HCC only (not secondary liver cancer). Registry will be for all HCC patients - high risk, diagnosed, and survivors. I need to check on Fibrolamellar HCC, I know that previously all hepato-billiary types have been tracked but will clarify with principal investigator.

[Bolly in reply to Hidden]

I'm an HCC survivor, so count me in!

[Hidden in reply to Bolly]

OK, I just checked with the people at Mayo. Fibrolamellar HCC is definitely included. We are working with Dr Sanford Simon in New York who identified the gene associated with FL-HCC, so its an important area of interest.

[Hidden in reply to Hidden]

HI my comments are obviously being ignored as the rambling of the "loony left" . But remember this we spent the treasure of an Empire, and the blood and bones of two generations of our finest young men and women. A land fit for Heroes was the politicians promise, I find it morally repugnant and an insult to those who died and their Heirs and Successors that this promise is being quietly forgotten in pursuit of filthy lucre. I recommend any one who has a chance to visit the battle fields of northern Europe to visit the Menin Gate And the Ossary at Verdun, if you don't weep you're not a member of the human race. We must fight tooth and claw to preserve what is left of that noble legacy and ensure that OUR NHS continues to provide world beating care free at point of nee.