Holidays: Hi All A question my wife... - British Liver Trust

British Liver Trust
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Holidays

Hi All

A question my wife asked as I’m sure she was Judith Chalmers in a past life but does anyone with Compensated Liver Cirrhosis still travel. I’ve been told at the minute not to be too far from my local hospital as my platelets are still very low and probably still at risk from infection but would kill for a nice sunny holiday.

I’m guessing travel insurance is one battle then the risk of infection being on a flight but did anyone leave it a time frame or when there bloods were at a certain level before they decided to travel.

I brought a lazy spa for the garden but not the same as a mocktail on a beach somewhere.

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Hi

I have Nash with fibrosis but I would rather stay over here as my liver numbers have gone straight up my Dr us quite worried and is waiting to hear from my consultant as to what to do next. In my case we could either get to an nhs hospital near to where we are on come straight back home. Sorry to put the mockers on your plans🤨 take care Lynne

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Hi.

I was kinda guessing that would be the response but wondered what everyone else kinda does or what levels they deem well enough to travel. My ALT’s are back to the 60’s in my last blood test but due another next week. I will speak to my nurse but still think it will be a while yet.

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Hi

Yes, that's a good idea. Your wife is right!!! Take care Lynne

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We women are always right 😂

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Your very sensible you could end up in a really bad situation if you went abroad at least in the uk you can just go to the nearest nhs hospital .

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Not to put too fine a point in it but almost exactly 2 years ago I went to Majorca with my then 13 year old daughter having been told

I had cirrhosis. I paid almost £800 for insurance. I ended up in a coma. Insurance paid one week private hospital care as it was the nearest to resort, spent another week in state hospital and had to be flown home by air ambulance paid for by my family - to the tune of £18k. Guess what I’m saying is DONT RISK IT 😬

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Oh me miserum - what a bummer smp ☹️👎🏻. Why didn’t the insurance pay for repatriation? What insurance company is it so I can avoid!

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Hello. In general, with cirrhosis of any stage sunbathing is not recommended and the sauna is also contraindicated. Although I read about people traveling on the forums. Sometimes it didn’t end well.

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I asked my husband's consultant about the sun and she said he didn't need to be any more careful than anyone without cirhossis. We also went to a spa recently and he went in the sauna. Where did you hear this? It's a minefield!

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Hello,

I know this, because I am a medical doctor. These are general recommendations for patients with cirrhosis that known even to senior students of medical university. There is simply a proven fact that UW radiation enhances liver fibrosis.

Good luck!

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Thanks. I'd better let his consultant know then. Hubby gets fed up of me saying he should be careful of this & that so it would help if the consultant got their facts right!

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You are absolutely right. I advised many patients who could not give up sugar and sweets despite my recommendations. This is one example.

Of course, it was their choice!

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I was told as the liver is involved in the synthesis of vit d, being in sun light was good. The correct levels of vit d are good for liver health. I'm not suggesting you are wrong, but I am confused by your ascercion that this is well known and basic level medical knowledge. I have been unwell for nearly 20 years, been to UCH London, Kings London, QE Birmingham, RVI Newcastle, Bristol RI, South West liver unit, I've seen consultants and professors, specialists in auto immune liver illness, PBC experts. Not once has any of them mentioned sun light being bad for the liver. I've looked on the BLT site, and the NHS site and have not seen it mentioned.

Sunlight is bad for other illnesses, and of course is contraindicated once transplant patients are on anti rejection drugs due to increased risk of skin cancers. But not heard anything about it increasing fibrosis?? If I've missed this info then I'm sorry I must be going loopy, please correct me if I'm wrong, othetwise if you could point me in the direction of some evidence for this fact I'd be most grateful. I'm sure the BLT would want to include this on their site if it's backed by reliable evidence.

Take care

Wass

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Thanks for this reply Wass. It's been troubling me. Hubby likes the sun, he's sensible & wears high factor suncream. I haven't mentioned this post to him yet cos I know he'll say the consultant said it was fine. But if it is true that the sun advances the scarring then obviously I'd want him to be aware.

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Oh wow Wass girl an excellent contraindication. 👍

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I didn’t know about the sunbathing or sauna. I was in Mexico in January but that was before being made compensated by a hospital mistake 🤦‍♀️

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I also did a lot of things until I knew that the liver was not in optimal condition. Every year in Cyprus rested. Now I don’t know if I did the right thing.

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Hi Steven, in 2015 and 2017, I went to Australia, I had compensated cirrhosis with no known varices and my Dr was happy for me to go. I'm glad I went while I could, as now I have varices, and am listed for TP, I'm grounded!!

The best thing to do is ask your Dr's if it's safe to fly, they maybe OK with a short flight. Or failing that a eurostar/tunnel trip to Europe. Whilst we are still in the EU, you can apply for a EHIC, which covers you for emergency treatment in Europe. I bought insurance for Australia, declaring PBC with cirrhosis, and only paid an extra £125.I have no other health conditions.

I hope you find a way to get to a sunny place.

Best wishes

XWassX

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Hi may I ask which travel insurance company you used please. When we asked the doctor about my husband flying he looked confused and couldn’t see why there would be a problem. We are taking that as a good sign.

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I can't be sure, but I think it was insure and go?? I'll see if I can find the paper work and let you know. The time before when I went, they covered me but not PBC, which I was fine with. If you're going to Europe it should be cheap, as we have a reciprocal agreement for emergency care, the insurance may be needed for bringing you back. I have a friend who was in a traffic accident in France. He was treated, but it cost him £3,500 for a private ambulance to bring him home to hospital for a bone infection. Luckily friends did a fund raiser for it so he was lucky. X

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Well I was thinking of Jamaica we usually go every year this will be the first year we haven’t gone due to husband’s liver problems. If you could find out for me, thanks

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Hi, it was insure and go. The BLT have a list of recommended insurance companies which cover long term illnesses, I don't know if insure and go are on that list. I just did a search. You can get a guote if you look on their website. X

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Thanks, people seem to have received such differing quotes. My husband hasn’t had a proper diagnosis yet when we asked for a medical certificate the doctor put down live disease and depression.

Not sure what questions we will get asked but I don’t think we have a full picture yet. Thanks for getting back x

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My doctor first put down Hep B and anxiety 🤦‍♀️

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I think they just ask, the cause of the liver illness, in my case its PBC then do you have varices (St the time I didn't) , have you been admitted to hospital in the last 12 months due to your illness, and I think that was it. If you don't know the cause you can just say of unknown cause, not yet diagnosed.

I remember thinking they didn't ask much. Be totally honest as they will try anything not to pay out if you make a claim, even missing out an appointment with a gp for a sore throat would be picked up if you didn't declare it before hand!!

Hope it's not too expensive x

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Do you mean decompensated?

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Hi Steven, I have compensated cirrhosis, and am going to Crete in September for just a week. I have an EHIC card, just in case. I missed out on a Canada trip, because the insurance for a 2 week holiday was £1800.....OUCH!!!!! I have family in Canada and a daughter in the USA, but have to wait for them to visit me. the Caribbean is a no go as well. I do have a few varices, but I am stable at the moment. I do have travel insurance, but it does not cover me for my cirrhosis. When and if we lose the EHIC card I will holiday in the UK only.

David

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Hi Steven_ As our lovely froum members have said you must always check with your medical team to ensure it is safe to travel. I have copied a link to British Liver Trust website which may have useful information regarding travel insurance available.

britishlivertrust.org.uk/li...

Best wishes

Trust9

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I have compensated cirrhosis and have been away a few times since I was diagnosed, I went to turkey last year and to Dubai

this year, for all trips I ask the consultant and DR if ok to go and they do not appear to have any issues.

Varices wise I was diagnosed but (fingers crossed) thus far have not had any banding or bleeds, the consultant said they are small and they were nothing to worry about?

For travel insurance it varies, turkey was around £50 and Dubai £300ish, both with allclear insurance answering all the liver questions and hiding nothing,

I have found anything within around 5-6 hour flight insurance seems ok (as ok as will be) but USA and Caribbean etc are out of the question, cheapest quote I have had for Florida is 3k!!

To be honest if your DR etc are happy then its really up to you, I always struggle with nerves on the flight and this is added to with worry about bleeds etc but I try to not think about it and enjoy life as much as I can.

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Hi Steven, I'm going to Corfu this month with many liver problems, waiting to be listed for transplant ànd newly diaģñosed diabetes. I'm determined I'm ģoinģ

My insurance was the cheapest at £370. I'm at Birmingham hospital tomorrow to ßee consultant and if he says no I dònt nòw what I should do. When I last saw him he said a hòliday will do me ģood. Good luck and hopè you get your hols best wishes, julie

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Hi Jules, how are you? Are you still waiting on those additional tests for your TP assessment?? Are they still watchfully waiting?

Good luck at your appointment, I hope they say you can go away, a holiday is bound to make you feel brighter, a break from everyday life is good for the soul.

Once you're listed you are stuck, so make the most of it if there is a delay in the decision.

Thinking of you, all the best

Wass x

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Hi, thanks for message, bit of à spanner in the works in that I've been diagnosed with diabetes so their not in a hurry to to list me. So the holiday is on.

Hope your òk

Julie x

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Hi Jules. When I went on the transplant list I'd had diabetes type 2 for over 20 years. Best wishes. Alf

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I had had diabetes for same time (or more 😁) than freddy and I had had high blood pressure for same time as well. And I still got on the list too 👍

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Hello I have also used insure and go I have cirrhosis and also vasculitis and I felt their price for Europe was reasonable and found their web site easy to use.I initially looked at another company but they didn't have my condition in there days base so decided to look elsewhere!

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They are fighting it as my relatives didn’t get their permission to organise it - even although it was in my ‘best interest’ to get me home for treatment. The company was goodtogo 😖

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Oh. I don’t think I have heard of that company at least it isn’t one that I looked at. Glad they’re fighting it. If they didn’t give permission how can they charge your relatives? There must be some law against that, surely?

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They aren’t charging my father - he had to pay upfront and we are trying to claim some money back 😩

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Aha 👎🏾

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