Hi, to start some background on me...sorry if its long winded. I am 48...49 on Monday (Ekkk) I was admitted to hospital after taking myself to the doctors asking for help back in Sept 2021. I could hardly walk and was short of breath - admitted with Decompensated Liver could hardly pee and was in a bad state. They took me off water tablets as while I had been admitted previously overnight with edema in Jan 2020 had scans everything and no scarring etc sent home told to loose weight and put on both co-amilofruse and Spironolactone - Liver disease was never mentioned (the one time I should have googled what the drugs were specifically for). I knew I was drinking too much but was relatively fit i.e. walking etc. over lock down drinking increased and took over totally by Aug 2021. Anyway I was in hospital for approx 4 weeks, they had taken me off of all meds when I went in so I ballooned massively so much so i couldn't get my butt out of the chair, or reach and wipe my own ....... (embarrassing). While in numerous tests they tried to drain fluid but could find any (Strange yes). I was told to do a low salt diet but not given any info where to go too??? (I have since messaged me GP to ask for advice on this).
I was put back on Spironolcotone and since leaving hospital in Oct have lost just over 3 stone. Itching stopped once the fluid had gone, wobbly tummy again but sometimes achy muscles oh and tingly / numb feet as mentioned in another post.
I had a follow up endoscopy in Nov as I also have Colitis and to check for Varices. On my report it just states colitis no Varices and recent bloods are all OK with GGT being the high one at 114 and Ferritin mildy elevated. AFP <4 guessing this is OK?. I had had one night of drinking two weeks before the test (Stupid) and felt rubbish so haven't drunk since. I have also had no follow up since leaving the hospital from the Liver doctor....guess I may have to wait 6 months...again I am chasing, I know there is a back log due to some Virus.
Anyway back to flying ---- on my report from the endoscopy it states I have Portal Hypertension (I have not been put on any medication for this). I know you guys can not give medical advice and again have emailed the Hospital doctor but wondered if anyone has flown with this? Basically, I travel as part of my Job practically once a month and with lock-down easing this will start again very soon...work don't currently know the full extent of the illness! I am just looking at peoples experiences if you have any.
Again know its a long story I guess sadly we all have them, but thought it would be good to give some background and maybe help some of you sleep reading it (Tee hee)
I am loving this group and have already called the Nurses (Thank You Trust01)
PS there has also been no mention of transplants to date. i asked what my MELD score might be while in hospital and all he said was it would be low...like that helps.
xx
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Rockie153
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Flying will need to be cleared by your consultant as there is a risk of bleeds if you were to have varices - many insurers will need recent all clear from varices (which seems to be the situation so far for you). Obviously you'll need to have sufficient health/travel insurance.
We had one former forum member who was flying from Africa to the UK and his varices burst mid-flight over France requiring an emergency landing and hospitalization in France - he had a crazy situation where he was responsible for not only his health care costs but also the costs of the emergency landing of the airplane plus costs associated with the delays to other passengers (onward flight issues etc).
Well I can't fault the insurance companies for that. What the policy says basically no insurance for you if your doctor says "Don't fly on an airplane. It's not safe". Guess what, I also wouldn't insure you if that is what a doctor has said. (I don't work in insurance...I'm sure you get the point!).
Yes I am still working full time, I never really stopped, even working from hospital much to the dismay of family and my medical team -but hey, hospital is boring 🤷♂️
Thats good to hear - I tried to work while in hospital the first time but the boss put a stop to that! Which in a way was a good thing as it shows he was concerned and wanted me to rest. Although watching all the episodes of the Crown (Thats some watching) along other rubbish - I was luck I had unlimited free data to stream on my iPad as no TVs in the ward I was in!
My husband had an endoscopy yesterday and had 3 varices which were all banded (he's had varices for 3 years (that we know of, he probably had them before that).. Before he had the procedure he asked about flying with varices. His consultant said that flying was safe with the size if varices that he has and that he would write to travel insurers to say that he was happy for him to fly. Can you speak to your consultant about it?
Edited to say that I know you said you don't have varices at the moment but I guess with portal hypertension the worry about flying is linked to if you get them?
Hi Thanks for your reply. Yes its the Hypertension I am concerned about, although the doctor didn't say anything at the time around dos and dont (Gastro not Liver Doc). I guess people were / are flying without even knowing they have it!
High Rockie robin. Travel insurance shouldn't be an issue as long as it is in work guildlines. A friend who is a avid drinker who's liver count is higher than yours Rockie travels to and from South Africa frequently (not so much through Corona virus). His firm covers everything (he does travel business class) not sure if this makes a difference insurance wise.
Anywho you said you were admitted with a decompensated liver and now you have issues with portal hypertension.... what are you playing at 6 months time you'll find out. Get InTouch and get some results, it is a waiting game but come on, I never even had portal hypertension and I was stage 4 decompensated (you know the last stage before death) sorry if I come across a little bit grrrrrrrr,ish it sounds like my local hospital where your diagnosis in "liver cuput" your UKELD score lowish come back in 6 months.
Ok Rockie robin it could be nothing but liver disease is being brushed aside like the common cold "yes a third of the country has a fatty liver and doesn't know it". (Righto doctor I feel a lot better now knowing that)
Hiya (Mr Smooth liver - It sounds like you have had a rough ride which you are coming through, which is fantastic and no not grrrrr ish. It is what it is, what is done is done I did it and cant change it but can help try and stop it getting any worse if I understand what I need to do.
Agree frustrated that I have not heard anything from the Liver doctor I originally saw on the ward in Sept its only the Gastro one that has followed up as promised. Not seeing him again until June. my notes when discharged say Cirrhosis ...was admitted decompensated as they didn't know (I have no idea) hence confused guess it may have to be decompensated for the Hypertension? (not going to google!). I think I might try and get a GP referral using my private company healthcare if they will do it to get full understanding for the issues and level my liver is at although I know after that it doesn't cover chronic illness but at least I would know.
You are right maybe I took out my first hospital frustration on your post teehee 😇. Yes they were very 🤷♂️ (I dunno). The specialist hospital where I went after begging for alternatives was fantastic and I wouldn't go anywhere else even if I'd stubbed my toe. Hahahaha you get my drift. I just take the approach of once I know what's wrong I don't have to worry anymore... I must say "you seem very laid back even blasé" about the whole "supposed" diagnosis. Quality attitude even"Bob Marley" "Don't worry, about a thing, cause every little thing, is gonna be alright" hahahaha 🤣🤣 x
Hi no not laid back and worried to death 💀 (no pun intended). But deep down hoping they have it all wrong 😑 but guessing not. I have been up and down maybe todays more of an up day x How did you get the specialist hospital via the GP? X
Sorry I completely forgot about the medical side... Being admitted as decompensated (was this a tummy full of ascites fluid) if so the diagnosis usually is you only get ascites fluid when decompensated. You mentioned no fluid was removed... Well in the specialist hospital there was a man with an enormous tummy full of ascites and they couldn't get any fluid from him (first go). Then he had a guided ultrasound drain which removed 5 pockets of fluid from different parts of his belly. Totally worked but he was F3/4 decompensated. I hope you get the Best help because it doesn't sound like they care really..."it must be lowish" hahahaha 🤣. Danny x
Portal hypertension doesn't necessarily mean decompensated. My husband is compensated. He was decompènsated at one point, 3 years ago, with bleeding varices and ascites (which is when he found out he had cirrhosis) but quickly became compensated when he stopped drinking.
Hi thanks for your reply 😊 it’s good to know you can go back to compensated! I hope hubby is doing well x. Also you are a fantastic support I hope you don’t mind asking but did you also drink with him? My hubby is currently in the pub! I have tried to ask him to stay home more - it’s literally across the road from us. I do still go now and again and people have accepted I just drink soda and lime now I don’t even get charged for it now and take my own mixer but he will often go without me. 🤔🥲 x
I don't mind you asking at all. My hubby was what I would call a habitual drinker. He never went to the pub, he used to drink in the evening when he got home from work. Our daughter is autistic and we went through a bad time with angry episodes (thankfully calmed down now!) and he drank to try and relax as it was stressful. To be honest, he used to never have a break which drove me mad & I used to say to him 'your liver needs a break!' but I didn't think he drank enough to get cirrhosis so it was a big shock. He stopped drinking straight away very easily thankfully. He has always said he didn't want other people to change their drinking habits and I'm not a big drinker but I do have a glass of wine a few times a week which doesn't bother him. But if it did I would stop x
Hi Thanks for your reply.. I don’t want him to stop and have said that as I know only too well if someone told me that I would say **** you and drink more! Funny after I posted which I didn’t tell him, only last night we were in the pub and he said to another fella who said he had a scare many years ago … hubbies actual words were ‘I think I need a wake up call’. I just said was not seeing me in hospital a big enough one for you? And left it like that xxx but thanks again. I have friends who have autistic children of differing scales so know not from experience the struggles but glad your daughter is calmer now x
No Rockie robin it was through the specialist liver nurses at the first hospital that got me an appointment with a specialist who came to the hospital once a week from another hospital who then got me a referral to the specialist hospital where I have never been so at ease (in a hospital) in my life. If it wasn't for the 2 nurses and me constantly chasing after them (excuse my terminology, it's not a carry on film) I wouldn't be hear now or still in agony with a hernia going to be drained every 2 weeks.. not good treatment. I hope you understand all that 😂 Danny x
That’s okay and agree about being decompensated for ascites fluid I can’t remember if he had an ultrasound (don’t think so) was just trying to find pockets 😂. I know I was in pain and couldn’t lay on my side which is how I sleep and whole body swelled up.
No way 🥺....I always got a little swelling but always manageable. Don't want to Tommy top trumps you but I had 17 little procedures 16 on the right one on the left. Listen we are always here from Richard with his enormous ray of information and Katie for her exact knowledge of the disease to all the experiences from everyone else pushthrough, Ubwa, it's all gravy Davey, Aotea, Laura, dogbot, Teletubby, Hilary, Kristian I apologise for missing people out but you know what I mean. For a cheeky few smile's bounce off Adilee, Aotea again, Dave n me the class 🤡.Take it easy and for the love of God..find out what is wrong with you.. hahahaha 🤣
Defo don’t want to trump you!! Thank you all even in this short time I love the advise and info everyone has. Even love the 🤡. Although I will need a plan to get to Florida!! I miss the sun after spending 2 years in Puerto Rico 🇵🇷 miss everyday warmth. Right back to spending hubbies money shopping 🛍 catch you laters x
You definitely would of started with an ultrasound just to avoid anything. (A straight route into your stomach. The guided ultrasound is where they use it throughout making sure they hit the correct areas.
I travel for work. They provide health insurance. You don’t have to declare medical conditions in advance. I’ve always taken the approach if I don’t ask I can honestly say I wasn’t advised not to fly. I don’t have varices though. I do have blood condition that causes clots and TIPS. I’m not saying this is the right approach but it’s not killed me yet - have had 6 trips to India and lots in Europe. Also realised flight socks great for stopping swelling in feet even when not flying 😀
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- It sounds like you have had a rough ride which you are coming through, which is fantastic and no not grrrrr ish. It is what it is, what is done is done I did it and cant change it but can help try and stop it getting any worse if I understand what I need to do. 
Wondering how long the process of endoscopies and banding can last . Any of your knowledge would be great thanks . 
Decompensated liver
#totallyconfused - flying with varices but no endoscopy planned for 12 months time
My Dad
Good news 
