Advice on Flying

I'm considering an overseas holiday later in the year and wondered if anyone has any advice or guidance, based on their own experience. I was diagnosed with decompensated liver disease five months ago, and I'll obviously speak to the Consultant to get their advice, but curious as to the experiences of others.

[YvonneM60]

I had a life threatening bleed . I have portol hypertension . Was advised not to fly at all . Just yet as I would bleed from the pressure in the plane .I also found medical insurance was higher than the holiday inc spending money !

[Hidden in reply to YvonneM60]

The insurance might put me off...

[Hidden in reply to YvonneM60]

A friend has just emailed me regarding the new UK Global Health Insurance Card (UK GHIC), which I knew nothing about! The UK Global Health Insurance Card (GHIC) lets you get state healthcare in Europe at a reduced cost or sometimes for free. Doesn't replace travel insurance, check out below link:

gov.uk/global-health-insura...

[Tia2021 in reply to Hidden]

I was told not to fly due to high risk of a bleed due to the pressure in the plane, x

[pushthrough]

That’s interesting. I have portal hypertension so I guess it wouldn’t be a good idea for me either.

[kensimmons]

I asked raised this issue with a Hepatologist a while back. He said if you go get an endoscopy right before you want to travel (I don't mean the same day, I mean like the week before) and they find no varices to worry about then it should not be a problem.

I am not a doctor and am not giving any advice, just telling you what I was told. Please do not travel if your doctor tells you not to, too dangerous, etc.

[Hidden in reply to kensimmons]

Thanks Ken,

Had an Endoscopy a few months back and all was fine, but I'll push for another.

[Sanblass]

My husband has cirrhosis and 4 small varices that the consultant is not worried about as the are only small. We flew to Tenerife in Oct for 5 weeks. He had no issues during the flight other than needing to go to the WC due to taking diuretics. He did discuss this prior to booking the holiday and is currently advised not to fly long haul. I hope you manage to go overseas but if not there are lots of places in the UK that are worth exploring . Our annual insurance went up from.£140 to over £700. We are booked to go to Tenerife for 5 weeks 29 January and to Furteventura 12 June for 3 weeks . We aim to get our monies worth from it. Obviously he'll speak with the medical professionals before we embark on either holiday. To add to his medical issues, he's been diagnosed with diabetes and this is managed with insulin injections and testing 4 times a day his glucose levels. It's been a lot to take on board. He was initially diagnosed May 21 with decompensated cirrhosis and December 21 with diagnosis. Good luck

[Hidden in reply to Sanblass]

Thanks Sanblass, strangely enough that's where I was thinking of. Two weeks in the Canaries...bliss

[Lippy42 in reply to Sanblass]

Hi my husband is recently been diagnosed with decompansated liver disease in oct he has ascites which he takes diuretics to control it at the moment he suffers with insomnia really bad he is currently on sick from work getting ssp we cant see any future at the moment some nights hes up all night I then dont sleep and struggle at work do you have any tips and is your journey the same as ours we finding it all overwhelming and dont really know what it all means long term .thanks in advance for any input. Sue

[AyrshireK in reply to Lippy42]

Hi Lippy, you might be better starting your own thread as your post is going to get lost on this one.

Sadly a lot of adaption needed when a partner becomes ill with this disease - hubby and I can't share a room due to his night time wakened spells since i'd never function day to day with his level of night time disturbance.

Hubby was diagnosed with decompensated cirrhosis (though with a massive variceal bleed rather than ascites) back in April 2012. He is on Personal Independence Payment (Enhanced Daily Living/Basic Mobility) and a currently virtual award of Employment & Support Allowance (he was getting support group payment but received an inheritance that meant we had too much savings so it's just his NI getting paid just now through previously getting the payment and able to claim Housing & Council Tax benefit). I am self-employed so can sort of amend my working to fit in with hubbies needs - also get carers allowance with hubby being on PIP.

My hubby was assessed and listed for transplant in 2014 but stabilized enough to come off the list in 2015. All these years later he remains stable and although not 100% well be far he can still make the most of good days and enjoys getting out on his bike etc.

You need to learn about the condition, be hubbies advocate if he struggles with comprehending stuff. Be the one to chase appointments, tests etc. if they arn't forthcoming. Learn about the condition as much as you can so you can make the most of any hospital consultations, ask pertinent questions etc. Don't just wait for stuff to happen, if you haven't had appointments when they should have been ............ chase them because sometimes they haven't been booked etc.

In our almost 10 year journey now we've certainly learned lots along the way.

All the best, Katie

[Lippy42 in reply to AyrshireK]

Thankyou so much for this already his first appointment has got lost in the system he was admitted to hospital 2 days before his appointment so I rang to say he was in hospital so to cancel the appointment he was then put down as a no show so that delayed everything as for pip I cant even get through on the phone but I'm off in 2 weeks for a weeks holiday so my plan is to do my best to get through and start a claim. It's just so hard no one tells you anything and covid hasnt helped getting a dr appointment is the worst everything through e consult but thanks again for replying

[AyrshireK in reply to Lippy42]

If you are going to apply for benefits I wholeheartedly recommend you pay the small fee to join the Benefits and Work website. They have members only guides that lead you through the process step by step - it's important to provide the right information for your claim and to back it up with loads of evidence including stuff from his doctor. The Benefits and Works site tells you how to fill in the paperwork to provide the necessary evidence. benefitsandwork.co.uk/

We had a battle for first PIP - had to go to appeal tribunal.

Katie

[Lippy42 in reply to AyrshireK]

Thanks again for this info x

[user2021a]

I've flown many times since diagnosis, booking insurance was ok if not been admitted to hospital in previous 12 months although interestingly was really high the year I'd been admitted with pneumonia which was nothing to do with my liver issues. I don't have varices but have a blood clotting disorder and blocked veins in liver (Budd Chiari). Flew to India with work which is a fairly long flight many times and never had issues. Been lucky that my current employer (last 4 years) provides travel insurance which is also valid for personal travel as have been in and out of hospital a few times in last few years - stent in veins blocked on 3 occasions, hysterectomy and urine infection. None of these were related to flying. I have blood that clots too easily though so was always potentially more at risk of clots than bleeding despite being on blood thinners.Check with your consultant though as the above should not be seen as medical advice and I have no idea what your own circumstances are.

Have to say I've taken the approach that as long as I have appropriate insurance should something go wrong then I'll take my chances - life is for living not worrying about living.

[Hidden in reply to user2021a]

Thanks for the feedback 2021a - it sounds like so long as their has been no hospitalisation in the last 12 months then the insurance companies are less interested.

[BetulaT]

My husband was diagnosed with decompensated cirrhosis last summer and he was advised not to fly at the time.

Fortunately it all seems under control now (I'm not sure if he is considered compensated as he has no ascites but is still taking diuretics?). He has portal hypertension and Grade 2 Varices, so I was worried about going on holiday abroad but his consultant said he is ok to fly now.