#totallyconfused - flying with varices... - British Liver Trust

British Liver Trust

36,541 members17,982 posts

#totallyconfused - flying with varices but no endoscopy planned for 12 months time

Maddie064 profile image
13 Replies

My partner has been through so many tests since end of March ‘23. He has been diagnosed with Cirrhosis Child-Pugh scoring A. Consultant now deciding on treatment for hepatitis strain which caused this. It’s not alcohol or fatty liver cause and he is at lower end BMI for his height and is abstinent from alcohol. That’s the background:

Although we have been informed my partner shouldn’t fly/go on holiday, we took this as needing to know if he has varices. Today we have had confirmation that he won’t have an endoscopy until sometime next year, so as it’s the only way to know if he has varices, I am unsure how everything the other tests (and there has been loads) have happened yet this seemingly isn’t as important

I thought they would also need to know for deciding on Hepatitis tablets for treatment

can anyone share any light on what the thought process could be here.

Thanks in advance x

Written by
Maddie064 profile image
Maddie064
To view profiles and participate in discussions please or .
Read more about...
13 Replies
BritishLiverTrust8 profile image
BritishLiverTrust8ModeratorBritish Liver Trust

Dear Maddie064

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

Bovrilelles profile image
Bovrilelles

You’ll be best to hang on! We have a lovely summer forecast here anyway so plenty in good old Blighty to do if you’re itching to travel.

I haven’t flown since 2019 and was diagnosed during lockdown. My varices have been treated and carvedilol started but also still waiting for a ‘confirmation’ endoscopy.

Couple of things to bear in mind:

1) travel insurance - how would you get it?

2) if a varices ruptured mid flight/in the airport queue after you landed how would you feel?

I’m of the opinion no one deserves me vomiting blood everywhere ruining their holiday and I’m ok with that. I’ll go when/if it’s safe to go.

Maddie064 profile image
Maddie064 in reply to Bovrilelles

I think as this has happened so quickly over the last 6 weeks, I think we are right in the middle of the change curve emotionally. Stuck between frustration and depression

The only thing I can say is that we were informed by the liver nurse that as my partner has only been diagnosed with Cirrhosis, that is what we would put for insurance purposes.

We are none the wiser on varices and won’t be until at least 2024. I think now we are aware of the diagnosis then it’s personal we want to know how much danger he would be in or not.

We also flew 6 times last year (3 trips flying there and back) without any issues and oblivious to any of the potential risks.

It’s difficult as no Consultant is going to give the ok as best practice to not come back on them is to say don’t.

Bovrilelles profile image
Bovrilelles in reply to Maddie064

I disagree about them agreeing to flights - my Prof is if the opinion a confirmation endoscopy will ensure minimal risk of anything happening. So speak to your consultant and go from there.

It’s lovely that you have the time and finances to fly so much but when you understand the complications of a variceal bleed - and just how serious it is… I’d not be wanting to have one mid-air just as the drinks trolley is coming round 🤣

On the flip side - at least folks could say ‘he died doing what he loved’. at the end of the day it’s down to him and what he’s comfortable with. But I still feel feel that a blood vomit volcano is a holiday ruiner for everyone. So if it were me I’d take the good advice below from @roy1955 and splash holiday budget #1 on a private endoscopy (deffo under £1k all in) and then see where we went from there.

Maddie064 profile image
Maddie064 in reply to Bovrilelles

thank you x. I must admit they were last minute budget holidays 😃. I have messaged around 5 Private facilities (willing to drive 100 miles or so as needed) to enquire time frames and prices and and all coming back with mandatory consultation £200 plus and endoscopy procedure £1,800 to £2,200. We just haven’t got that kind of money though.

Yes my partner is and has to be the priority and also the grand children who would have been travelling with us. As I say, I think we are just emotionally all over the place and letting the grandchildren down is better than the alternative possibility

Bovrilelles profile image
Bovrilelles in reply to Maddie064

Wow - I see the bills my insurers get and I don’t think it’s been that high before. They must get preferential rates. I’m sorry :(

Now you’ve added grandchildren into the travel mix I’m firmly of the opinion a UK holiday is for the best now!! I’m sorry if I seem blunt but we had two holidays cancelled because of lockdown (whilst I was under investigation for my liver disease - it took over two years for me to get my diagnosis) I look back now and think ‘THANK GOD’ we didn’t get to go. I dread to think of the mess I could have made. Add to that the fact I’m feeling smug about my aeroplane miles & knock-on carbon footprint being very low (your grandchildren will thank you for that one too!!)

I’m focussing on making home stays the best fun they can be! It’s amazing how much fun you can have in this country!

Sending you a big hug. You don’t need to rush into anything just yet, focus on that endoscopy date - whichever path you take - and the fun will follow after that. Xx

Maddie064 profile image
Maddie064 in reply to Bovrilelles

thank you

Roy1955 profile image
Roy1955

An endoscopy is important but the NHS will not work faster because you want to go on holiday.Unfortunately because he is stable it's a routine (almost selective) procedure.

You could opt to go private and have it done in a few days.

His Dr's will never commit to a definate "yes he can fly" because they don't want you going back and saying its their fault he had an incident while flying.

I think you mentioned a no fly cruise, that's probably a silly price for health insurance.

Far more expensive than a land based trip.

Finaly has it been noted on his health records that he has been advised he should not fly ?

It it has then accept it.

PS

I would say sod it and still go!

Maddie064 profile image
Maddie064 in reply to Roy1955

Thank you, yes we are looking at private, it just seems that if Consultants don’t seem to think finding out if he has varices is urgent then perhaps the likelihood is small, as he is early stages cirrhosis. But who am I to know.

We flew 3 trips last year (this 6 flights) totally oblivious.

Surely whilst doctors don’t care about our want for holidays, bleeding varices are just as dangerous without going away, so I can’t understand the length of time, is there something we don’t know

I also do understand that no doctor/consultant would say yes go in this ‘where there’s a blame, there’s a claim society’ - I literally would prefer honesty though of the risk probability and so my partner can make a balanced decision based on the balance of probability.

NoMorePlease profile image
NoMorePlease in reply to Maddie064

Hi,I was dx'd with Cirrhosis May 2020, in fact I was told that I had I not got to hospital when I did they would have given me 2 days to live... I didn't have a clue I was sick let alone at deaths door, I knew I had NAFLD that had been stable for 10 yrs. In 2017 I was dx'd with type 2 Diabetes.

As mentioned I was dx'd with Cirrhosis + Ascites, Acute Kidney Injury, Anemia, Spontaneous Bacterial Infection and malnutrition to boot! This was May 2020 and as serious and life threatening this was I didn't get an exploratory endoscopy until March THIS YEAR, despite being put on the waiting list in 2020.

I have 3 esophageal varices grade

1-2, I take Carvedilol.

What I'm trying to say is, I absolutely get how your emotions are all over the place, how you can't get that everything was OK the last 3 times you flew so really nothing has changed, apart from you now your partner has a serious illness that could potentially deteriorate rapidly needing emergency care.

At the top of my bucket list is a trip abroad, to feel the warmth of the sun, to swim in the sea and to walk bare foot in the sand.

Aberdeen beach, as nice as it is doesn't quite meet the mark 😎

It's our 25th wedding anniversary in August, I would have loved to go abroad to celebrate, disappointed as I am I also know we live in beautiful Scotland, there are loads of places to visit.

I hope you and your partner find ways of coming to terms with the ups and downs of this disease.

Take care for now x

Maddie064 profile image
Maddie064 in reply to NoMorePlease

thank you, I think time to get our heads around this is important. I hope you manage to get to walk across that beach abroad one day soon x

Chick_atee profile image
Chick_atee in reply to Roy1955

Given the seriousness of the disease try and get an endoscopy although I wouldn’t put myself through that for a flight. If clear, great!

Holidaying at home is best and takes the stress and anxiety out of trying to go abroad at the moment. Have to watch those cortisol levels!!

Saying that it is ultimately the persons decision.

I’ve invested in a little garden furniture to be able to enjoy the summer a bit more this year and feel safe that I can get to hospital if needs be.

Bs1524 profile image
Bs1524

Hi Maddox not sure if helps or not my husband was diagnosed with two I think they said grade 2 varices back in May 2019. They have never scoped him again and was told last year that he could fly but try short haul first. Perhaps it would be best to speak to your consultant as he is the only one that can advise you. Take care x

You may also like...

Husband having transnasal endoscopy to check for varices

My husband has cirrhosis, portal hypertension, mild hepatic encephalopathy and ascites and is having

flying with varices, portal hypertension

travel. Unfortunately in that time my varices ruptured and I ended up in critical care. I’ve...

Endoscopy.. Varices or something else

got my endoscopy appointment for May. I have cirrhosis and ascites, I understand that varices...

Alcohol Free for 12 Months

so much better, my vision has improved ( really ) , my feeling of guilt has gone, I look and feel...

Nervous about my upcoming 12 month review

It’s a year since my diagnosis of cirrhosis. I was very sick at the time. I had a deep rooted...