Help with New Diagnosis of Cirrhosis and Holiday

[Maddie064]

My partner literally went to the GP as he had blood in his urine at the end of March '23, he was given antibiotics and it cleared up. However his urine sample showed something that made his GP contact him and request he went for blood tests. Since then and in only 6 weeks our lives have completely been turned upside down. He has had 4 lots of blood test at different stages in the 6 weeks, magic eye and ultrasound on bladder, met with a consultant, X-rays, fibroscan in the BBV (Blood Borne Virus) clinic and chat with the nurse, MRI scan and a further appointment with Consultant on 31st May '23 - it has been a complete whirlwind. He has been informed he has Hepatitis C, probably from 20 plus years ago and cirrhosis which is in the early stages Childs-Pugh scoring of severity A, his albumin is low and his bilirubin is improving. It suggests he has compensate liver function (as letter states there is a small risk of decompensation during treatment of HCV (hepatitis). We have not as yet had a endoscopy/gastroscopy to know if he has varices, but he is not got any bleed symptoms that I have read about. He has not been hospitalised but consultant doesn't want to start treatment until the consultant has written to his colleagues in the Birmingham Transplant Unit to see if they are happy for treatment to start and also they can assess him should any problems arise that he is known to them to help deal with it.

He is attempting to quit smoking and cut right down in the 6 weeks and is abstinent from alcohol since the end of March '23 when this all started - although this wasn't really an issue.

I know this is all long winded but prior to 6 weeks ago and no straight answers anywhere we were totally oblivious and now shocked, worried, scared and so much more.

We were supposed to be flying out to Turkey on 30th June for 10 days and initially the Consultant said we shouldn't whilst he was undergoing tests, then the nurse in the BBV clinic said it would be fine and ensure we had medical insurance as now diagnosed with Cirrhosis and so we got insurance and then we had a call yesterday to say that it isn't fine and that whilst it is theoretical that flying could cause bleeding there was no scientific evidence of this only theoretical but he should not go until he has an endoscopy (which could be in 12 weeks time) to see if he has varices or not.

We cannot cancel as our 1 of our grandsons is on our holiday booking and so I would have to go without him. So we seem to have varying party lines on him flying to Turkey in 6 weeks, although we went away 3 times last year with no issues and 6 weeks ago we were totally unaware until the urine sample, although he has fatigue and sleeps more and more.

Is there anyone out there that can shed some light for us as he is thinking of just going as the Consultant is just saying give up everything basically and the nurse advised differently and stated about the no scientific evidence to state flying can cause bleeds and it is theoretical, but then rang to overturn it after consultant meeting - mostly due to the endoscopy not having been done I believe.

Portal Hypertension has not been mentioned to him either way (good nor bad) - his weight is healthy but he has changed his diet accordingly since the diagnosis, his fitness level is fine as works manual job, stopped drinking and cut right down, around 4 a day, to attempt to stop smoking (which will be the most difficult for him), although he has done all this since diagnosis.

My partner due to all this is just thinking to go anyway as no-one is being very clear on this, but yet doesn't want anything to happen for me and our grandsons sake in flight.

I have never been so scared, confused, anxious and stressed with it seemingly decisions left to us.

[Chick_atee]

So sorry to read that. If things are unclear medically then I personally would not take the chance to go on holiday. It is a very serious disease but can be managed when you both know exactly what is going on medically.

Perhaps a refund could be given by the travel people if the case was explained and you could defer until you know the status of his health for sure.

Good luck and I hope for the best possible outcome for him.

[Maddie064 in reply to Chick_atee]

Thank you, we can’t defer or cancel as we have 1 grandchild on our booking and my other grandson is on my daughter and husband’s booking. If neither of us go, then our grandson on our booking can’t go and his brother and parents will be out there. They are completely separate bookings for free child places. As we are already in shock, the thought of going without him on holiday is making it worse as the magnitude of the situation which we still haven’t got our heads around. Silly thing is by removing him from the holiday booking makes no difference as they will charge full for my 3 year old grandson as it will be under occupied (and it has to be 2 adults for free child place) so £1400 for a 3 year old to go on holiday. Thank you though.

[ThreeSmiles]

Hi Maddie

I am very sorry to hear about you and your partner’s traumatic situation 😕.

I have to be blunt and say that your travel insurance will be invalidated if you travel whilst the medical people are saying not to travel. Although the risk of something happening may be very low the consequences could be very high. It’s just not worth the risk imho.

I can’t even get travel insurance at the moment because I am undergoing tests so am very aware of the stance that the insurance companies take.

Sorry to put a downer on your break which you probably desperately need at this time.

Good luck to you both and I hope your partner’s conditions improve.

Miles

[Ubwa]

I would take what the consultant says over what the nurse does IMO. It is a very serious condition and not one to start taking chances with. I am very surprised if your insurance is really not affected, as most people can’t insurance with specialist insurance companies, and that’s with compensated stable cirrhosis, never mind a new diagnosis that’s still in the investigatory phase.

He really doesn’t want a variceal bleed bleed, trust me.

[Ruby1960]

could you afford to pay for the endoscopy privately? I was diagnosed with Hep C in 2020 (blood transfusion), had treatment & now clear of virus but have cirrhosis. I fly 4/5 times a year with no problems. I’m insured with Staysure & pay £50 monthly for annual policy. Life is for living and as my doctor said to me “you will die with cirrhosis' but that dosnt mean you will die of it”.

[Maddie064 in reply to Ruby1960]

Thank you, I think it’s the shock not helping. The cost going private is same price as the holiday and he is on the waiting list for NHS endoscopy. I think this time around he sits out 10 days holiday to ensure he is still alive and wait for treatment. They haven’t started the Hep C tablets yet but say they believe they can clear the virus 90% plus of the time now and his cirrhosis is mild, so thank you for the positivity and perhaps we can start when he has the all clear of virus with a no fly cruise x

[Tizzwas]

Tough call.What I will say is this, try speaking to your holiday company and explain what's happening. We have had two refunds due to very similar issues occuring in a short space of time (one was TUI, one was easyJet). They were both brilliant and we had the money back in a few days.

I personally now go away every month or so but I am fairly stable despite being on the tp list. This time last year I wouldn't have dreamed of it. I'm just not insured for my liver condition but we book last minute if I feel ok and don't go anywhere too far (within a 3 hour flight) if I need to come home. He'll get used to managimg that but at the moment he'd probably need a fitness to fly certificate from the doc.

I would advise him cutting out drinking and smoking completely, I'm sorry to say this but it is needed. I'm surprised the doctors haven't said this already. Particularly if he ends up needing a tp at some stage, then he'll absolutely have to.

Seriously try the holiday companies, they are a lot more helpful than you think.

[Maddie064 in reply to Tizzwas]

Thank you, he hasn’t had alcohol since before we found out and isn’t bothered and down to 4 cigarettes a day maximum. It’s only been 3 weeks since diagnosis. The only test he hasn’t had is an endoscopy for varices. He’s had 2 x ultrasound, magic eye on bowel, MRI and fibroscan. Child-Pugh A - mild cirrhosis scarring. They are waiting on endoscopy before treating the Hepatitis. We would also know if he had varices but waiting list for endoscopy is fairly long with COVID backlogs

[Roy1955]

As long as he has declared cirrhosis and ALL his current medical conditions to the insurance then I would be going on that holiday!Don't forget to get a free European health card from the NHS.