flying with varices, portal hypertension

[GEMMA1991]

hi,

I have a diagnosis of portal vein thrombosis, portal hypertension, enlarged spleen, grade 3 esophageal varices all due to auto immune blood disorder. Am on warfarin, omeprazole, propranalol.

I booked a holiday to Greece 4 months ago and was waiting for esophageal banding therefore did not book insurance yet as I was still awaiting a procedure therefore would be charged a lot more so was planning to book post procedure with avante. My consultant said I was fine to travel.

Unfortunately in that time my varices ruptured and I ended up in critical care. I’ve since had 3 more banding sessions and am awaiting a tips procedure with no date as to when this will happen

1. Has anyone had tips procedure and what is the recovery like?

2. Any advice on holiday as I’m not insured, my consultant said I would be fine to go but I am certain I won’t. ( he is not very helpful at all ) . Was thinking of getting a letter from the GP saying I’m unsafe to fly to escalate to travel company and try and swap holiday? Anyone had any luck with this?

3. Would love to chat to people with similar diagnoses as i have limited advice from healthcare professionals and terrible experience unfortunately!

Thanks

[heslinjones]

Had the tipps procedure. No more varices no more bleeds etc. Heptalogist said 99%of bleed possibility eradicated with the procedure.After effects very few. 1 bout of hepatic encephalopathy treated after leaving the hospital with riflaxamin.

All in all tipps was successful so far. I have a letter from my consultant saying flying to Thailand is fine.

[GEMMA1991 in reply to heslinjones]

Thank you this is very reassuring! If only I could just have this before my holiday so I don’t have to cancel ! But I have no long idea how long I’ll be waiting for it as I’ve been referred to a specialist hospital and my consultant doesn’t know how long the wait it. Will keep pestering them

[heslinjones in reply to GEMMA1991]

The other benefit for me was no more endescopies . Hated them.

[marknash67 in reply to heslinjones]

Glad the TIPSS worked for you. I hear its mostly unsuccessful so nice to know there is hope . I'm the same with the bleeds and at Xmas collapsed and died in ICU. Thank god I was brought back but had to have a blood transfusion to bring me back. I'm goin for my assessment this weekend for a 3 days worth of tests for a liver transplant. If I'm offed tipss now I'll consider it because it worked for you. Thanks x. Take care

[GEMMA1991]

Me too, The banding is such an unpleasant experience. I had a lung collapse after one lot, and when I had my big bleed it happened not long after banding so I don’t have the best luck with it! Do you have general anesthetic for tips?

[heslinjones in reply to GEMMA1991]

Yes but it leaves no physical scarring. It's scanned every 6 months to check it's working. Out the Day after procedure. Heptatic encepalopothy about a month after which I have to say made My children giggle a lot before admission. All in all so far so good. Thanks QE hospital Birmingham

[GEMMA1991]

I’ve read about this seems quite common! Glad it worked well for you. Hoping I’m not waiting too long for mine 🤞🏼

[mrob0823]

I also have an immune disorder (CVID) that has resulted in splenomegaly, varices, and NRH, and likely facilitated a portal vein thrombosis 2.5 weeks after cholecystectomy. If you don't mind me asking, what is your immune issue?

[Devonviolet in reply to mrob0823]

I think you are the first person on here that I’ve seen in years with CVID and NRH! It’s good to know I’m not the only one. My symptoms mirror yours exactly. Only 9% of CVID patients get NRH. So we are in a small unfortunate group. This also went on to cause pulmonary hypertension. Luckily one hospital doctor realised this. But only after I had been told my heart disease would be irreversible and I had about three weeks to live! That was18 months ago. It is hard with rare diseases , as they go under the radar even by hospital doctors! Life is complicated by the fact I am now under three different hospitals and consultants. There are two good patient advocacy charities. For CVID it’s the immunodeficiency U.K. and pulmonary hypertension ( which hopefully you won’t get), it’s the PHA . Good luck with it all!

[GEMMA1991]

Hiya

Sorry to hear this. I have anti phospholipid syndrome which causes blood clots. Took quite a while to diagnose and I had to do a lot of research myself!

Wishing you all the best

Gemma