Good morning all
We are looking at taking a well earned holiday very soon but there will be a long haul flight of about 12 to 16 hours depending on what last minute deal we can achieve. I am stage 4 between decomensated and compensated. With two grade 1 varacies. Am I putting myself at much risk? Appreciate if this has been covered in the past.
Hi there .when I was admitted to A and E with a bleed one of the many fleeting comments by a consultant who’d just visited my bed was that I shouldn’t risk flying as the pressures at altitude were likely to increase the chances of me having another bleed.so for that reason alone I never took the risk.im now post TP and looking forward to flying abroad for our first holiday since becoming ill years ago.but if your asking about this.does this mean you’ve also been advised not to fly.all the best.paul
Hi Popel
I have just had my assessment for transplant and will get the outcome next friday. I mentioned this to my Transplant coordinator who were reluctant to comment advising me to see my consultant heptologist who I see next Wednesday or speak to my GP to date I currently haven't had a bleed. I understand the added risk and many people must fly with this condition. There is also plenty of medical insurance available. I wonder if anyone has actually flown and encountered a problem.
Hi my partner had a bleed and did fly, however no insurance company would actually insure for varical bleed or anything to do with liver. So you would be uninsured for anything that goes wrong with your liver varicies.
He was then recently told by his transplant consultant that he shouldn't have flown at all due risks.
He managed 1 long haul and 3 short haul flights before he was grounded with severe water retention, swelling etc.
Difficult one but the insurance is key and chris tried loads of companies butand paid and paid a massive premium.
Hope that helps
Hi again.so if you’ve had the assessment and your listed You won’t be flying anywhere anyway as you’ll be waiting for an available liver.so when we’re you planning to fly?
Hi Popel
In about 2 weeks time if I wasn't listed but after reading the dangers and unattainable insurance I definitely wont be either way.
Good decision. A definite no no imho!
Good luck with the TP. Wait for the call about 0230 - seems that is the time - well it was for me - twice.
Miles
Cheers Miles. Bloody antisocial of them calling at that hour, probably be awake anyway.
Yes you probably will be if you are like I was ☹️☹️
By the way how's your general health now post tp?
Well liver is 100% thank you. It’s a new life and that is not an exaggeration!
Silly me tore my stomach muscles apart though doing too much lifting too soon ☹️. That has caused me gip for 3 months now, and there’s nowt that can be done except time. It will never heal apparently but it will eventually stop hurting 👍. So be very very careful and take heed of their advice - I was told often enough but thought I was OK - wrong!!!
Good luck again. And get some sleep - you will need it - well you won’t really but they like you to be “fit” 😁👍
Miles
Glad to hear your progress is so good despite the heavy lifting. I've just done a reasonably fast 5 mile walk. My discharge report says I did really well in the CPET test . Trying to keep as active as I can / feel . You've inspired me to get to your position in life and I know I can do it.
Just short note Maxey to wish you all the best for when you get the call!
Love Trish x
I think that's a good decision Maxey. I could not fly to NW Canada of Seattle this year because of the not being able to get travel insurance. I am stage 4 cirrhosis compensated at the moment with 2 varices like you ( no bleeds), but not on any transplant assessment. I didn't feel the risk was worth it, with no insurance due to the astronomic medical costs in the USA and Canada. I am going to Crete in September for a week, while I still have the EHIC card for EU travel. the worst scenario would then be a Medivac flight home.
David
Thanks David. Out of interest are you not yet scheduled for a transplant assessment?
I don't really know to be honest. I am compensated at the moment, but when I asked my hepatologist about a liver transplant he said that at my age, it was unlikely (I'm 72 years old) I am reasonably fit, and I think I would pass the assessment, but will probably not get the chance, unless mt liver goes decompensated. Interestingly, since my diagnosis in Oct 2016, a copy of my blood results have gone to Kings Hospital, presumably to prove my abstinence from alcohol. Maybe you could try a UK holiday, but you will have to get to the transplant centre PDQ, if you get the call.
David
The last flight I was took was in 2015, I was undiagnosed at that stage, finally diagnosed a month later. I suffered portal hypertension during the short flight and felt really awful. When I landed, I was shaking uncontrollably. That remains the last flight I have been on. I am over 10 months post transplant.
Hi Mark
That sounds horrible. Can I ask how short was the flight and can you fly now, post transplant? Thanks.
The flight was 50 minutes to Dinard in. Normandy. My Heptologist has told me, post transplant surgery that I am OK to fly physically but the memory remains.
I imagine so, and I dislike flying anyway. Well that rules that out lol.
We did have a member some time ago who was flying in from Africa with then un-diagnosed cirrhosis with portal hypertension. He had a massive bleed in flight causing his plane to have to make an unscheduled and emergency landing in France where the chap then had to be hospitalised. You need travel insurance for such a possibility as you'd be 'hit' with the airline fees etc. You often need to have an endoscopy before flying to ensure you are actually safe to fly.
Also whilst I understand you wanting a holiday before t/p listing if you do get listed on Friday you'll need to be suspended for the duration of your trip and could potentially miss your perfect liver. If you are poorly enough to need transplant then are you actually healthy enough to go on a long haul trip?
Katie
Hi Katie,
I think I was clutching at straws to be honest. Assuming I make the tp list a nice break in the home counties it will be.
I do know of other folks who have been told no flying, the insurance alone would be astronomical especially in light of your potential t/p listing. When hubby was on the list we were limited to having to remain an hour away from home so he could blue lighted through to Edinburgh if the call came (as it turned out he actually improved and was delisted, we bought a newer caravan and hit the road, making the most of this window of freedom in case he deteriorates again in the future).
Best wishes for Friday, hope its the result you want.
Katie
Thanks for a lovely reply Katie. I'm hoping I will make the list so fingers and toes crossed.
We had to be able to leave home in an hour. We then had about a one and a half hour journey to QEHB. If we had got stuck we were to ring up and they would have got us a police escort 😁. No public transport allowed.
Good luck on Friday!!
Miles
I was told to think about the cost of diverting a flight and being suspended from the list. The South Coast is lovely.
It is. I'm lucky enough to live here outside Canterbury. The plus side will be being a stones throw from kings if I make the list.
Good luck with getting on the list, I was on it for 19 months due to my blood group. My transplant hospital is the Royal Free and enabled me to get to Dorset and East Sussex. One thing that I always made sure, is the phone reception and where the nearest A&E was. The coordinators need to be informed of your movements.
I actually joined the site because of holiday insurance I had already booked and had no idea just how even fibrosis puts us in megabucks category! 12 nights in Mallorca - cheapest was £350 several in 4 figures.I just lost the flights hadnt paid for apartment Even with planned surgery with general anaesthetic once pre op done its a no no to fly. My daughter was booked in for a major op, she had booked 12 months before. Surgery was more important to her so she forfeited it. You have some beautiful beaches near you, so put in your earphones, some super dark shades and pretend lol. Wishing you well for getting your transplant, Ensure your car has petrol etc, not many garages open at 2.30 am!
Hazel xx
Hi, go and enjoy yourself. I was in a similar position but have flown to New Zealand twice and had the best time with no affects from flying long haul. You may want to break your journey up if you can? It would also work out cheaper if you fly with an airline which may have a few stops.
Happy travelling
Hi
Nothing I'd like more but will never get insurance and the health risk just isn't worth it.
sorry to say mate but you are right the risks are too great my wife had a very bad flight they looked at diverting the plane but lucky enough there were medical people onnboard that help out and that was before she was diagnosed she also spent 5 days in hospital after the flight when in mexico and that was when she was told she had bad liver problems
I know it is not the same but there are some nice places to holiday in the UK and if you get on the transplant list and tell them where you are going they might be able to sort something out for you so you do not miss a new liver but to be honest after listing you are normally looking at a few months before it happens unless you are realy bad
Dave
It's so interesting to read everyone's different experiences. Until last year, we flew every year to Goa in India with no problems apart from very swollen legs. I was diagnosed in 2017, since when I've flown to India only once, with no ill effects at all. Insurance for cirrhosis sufferers is stratospheric, so I flew with no cover for my liver. My attitude is a bit gung-ho, to be honest - I'm 72 in September so living life to the full is more important than worrying about my flight survival risks. I suppose that's very bad of me? I should add that my cirrhosis is compensated and I have no symptoms.
Nowadays long-haul flights are off the agenda because they're frankly too tiring at 72 and 81. In October we're flying to Crete, which I think is a 4 hour flight. If anyone knows of an insurance company that will cover my liver disease at an affordable cost I'd be grateful to hear from you.
high there I have got insurance going from Glasgow to turkey for 2 weeks with AIH cirrhosis and osteoporosis for £160 with insure and go. Forgot to say I am under 60 don't know if that makes a difference.
good luck
Thank you annmtag. Yes, age makes a huge difference to the cost of insurance - I'm 71 now, and the cost shot up when I reached 70.
I flew to turkey last year and Dubai this, insured with allclear at around £300, diagnosed with varices, not sure what grade but consultant said "nothing to concern myself with", take beta blockers for anxiety and assume these help with the varices as well.
On checking insurance on various countries anything USA / Caribbean side is astronomical, Florida was around 2.5k, Europe and closer however around 200 - 300 and that's with detailing liver damage / varices and answering all the questions honestly. I must admit I normally get a little nervous before the flights and think the worse will happen but so far so good, hope you get something sorted or even better a quick transplant!
Thanks Chris.
Thank you so much. When you have cirrhosis the cost of insurance adds quite a bit to the cost of the holiday. But I won't be deterred - life is for living!
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