Please dont be too hard on me as i have never joined a forum before and im not sure if im doing it right . I have done this because I have just had my life turned upside down and I am usually a very strong person but now im in bits and cannot see a future.My partner who is 43 had diverticulitus 4yrs ago,he had to have bowel surgery and a colostomy bag which thankfully they reversed 2 years ago but it left him with a very big hernia which required more invasive surgery..So sorry need to cut to the chase he had a ct scan due to a problem and we have been told forget that problem you have cirrohsis of the liver and portal hypertension and will need a liver transplant!!!!! We are both in shock and dont no where to turn.My partner was a drinker and party animal back in the day but it now looks like him having fun has given him a life sentence.Please can anybody give me any advice as we are due to go on holiday on monday no suprises cannot get insurance as his condition has not been diagnosed from a liver specialist and are on waiting list,can only get basic insurance and im so scared to go in case a vein ruptures .Im in a very dark place and dont no where to turn.HOW LONG WILL HE LIVE!!!!!!!!
Hi Everyone,Im claire : Please dont be... - British Liver Trust
Hi Everyone,Im claire
Hello Claire and welcome to our merry band. No worries with your first post and hopefully we can be of assistance and support to you as you go forward with your partners illness.
Ok, so he has multiple heath problems and now a discovery of cirrhosis with portal hypertension. Doctors will now want to examine the possible cause of the liver damage and deal with that and any/all side effects he is already displaying. Just because he's been a 'party animal' in the past doesn't actually mean that is the cause of the liver damage. Doctors may need to do a liver biopsy to discover the level of cell damage and identify causes - other causes such as viral hepatitis etc. will need to be ruled out via blood screening.
Portal hypertension is due to a backing up of blood which is trying to get through the liver but due to damage is being restricted in its flow. This as you've already mentioned can cause other blood vessels to bulge and indeed burst (in the case of varices in the oesophagus).
If you are due to fly to your holidays then the portal hypertension could cause problems there - normally when someone has a diagnosis of portal hypertension they will need an endoscopy to rule out any varices in the oesophagus and they will need to be treated and be all clear prior to flying. Unbanded varices can be dangerous in flight as they can indeed rupture with the additional pressure. I certainly wouldn't be travelling without insurance when your partner has these issues which are only at the early stage of diagnosis.
As regards questions of how long will someone live, that really is a "How long is a piece of string question?". There are folks on here who have had a diagnosis of cirrhosis for 20 years plus and are still around - the cause of the cirrhosis needs to be halted and your partner will need to look after himself as regards diet, salt and sugar intake and exercise where possible.
My husband was diagnosed with cirrhosis after a massive upper GI bleed (from burst varices) in April 2012. After a raft of blood tests and a biopsy his was deemed to have been caused by auto-immune hepatitis ( he is life long tee-total & lived a very healthy and active life). He is treated by a local gastroenterologist but was also referred to the liver transplant unit in June 2013. In June 2014 he was assessed for and then listed for a liver transplant and at the same time was put onto a high carbohydrate. high protein diet and also prescribed supplement drinks. Over the next few months his blood results gradually normalised and his weight crept up (going from a malnourished 8 1/2 stone to 11 stone with regained muscle). He walks a minimum of 20 minutes every day and more when he feels able. He's had 42 varices in his oesophagus banded (after his initial 7 burst veins) plus has had to have an embolisation operation on aneurysms which his portal hypertension caused in his splenic artery.
After 10 months on the list he was actually deemed to be doing too well for transplant and we are now just being monitored both locally and over at the transplant unit. He has an endoscopy next week (the first for a year) and every 6 months has an ultrasound scan.
He's doing ok in the grand scheme of things, has a good appetite. He does have some elements of Hepatic Encephalopathy which means he gets very confused and has memory issues at times. His main symptom is chronic fatigue although this isn't every day and he can push himself to do bits of activity at times.
Hopefully your partner will be referred to a transplant centre quickly for consideration for transplant. Is your partner now tee-total? Because that impacts on the assessment and procedure to transplant as most UK centres require a minimum 6 month period of abstinence where alcohol is deemed to be the cause of the liver damage.
The BLT have a good page and downloadable leaflet which will give you more facts and information on cirrhosis. It's at :- britishlivertrust.org.uk/li... .
You are very early into this journey and no doubt over the coming weeks there will be lost of visits to hospital but hopefully they can get your partner stabilised and on road to a brighter future. Whilst cirrhosis is a serious diagnosis, hopefully our story above might give you some hope.
Keep in touch on here, there is always someone around to give support, advice and a place to vent which you might need at times.
As regards your holiday - if it is going abroad you may wish to delay plans sadly.
Wishing you all the very best, Katie xx
Thankyou so much Katie for your reply I was constantly looking to see if anyone would maybe get back to me and you did cannot tell you what it means to me.I feel after reading what you have and are going through my issues seem so small.Im sorry that i forgot to say (MY HEAD IS NOT WORKING)my partners dad had to have a liver transplant when he was young and he was told it could be genetic he was a drinker too!!! My love has no symptoms ,has not drunk heavy for years occasionally has a few beers.He has just got a job after 4 years of illness and is doing well and he wanted another holiday after the one we had in march. I cannot even try to think of what u are going through you are one hell of a very special lady and you have given me hope that life may go on and we can still get married as we had planned.xx Kind Regards Claire xxx
So, doctors need to see what illness his father had too, it may be that he has a genetic disorder and there are a few which can damage the liver (Wilsons Disease & Haemochromatosis are just two). There is also a possibility of a genetic pre-disposition to liver disease which can lead to a greater susceptibility to sustaining damage to the liver through alcohol or indeed to an auto-immune disease of the liver. Doctors have a fair bit of investigating to do to establish what has caused your partners illness. I suspect with the various surgeries he has already had in life he will have had significant medication regimes - some medicines are harmful to the liver and some have even been thought to trigger auto-immune conditions.
It's great that your partner is feeling well, let the doctors establish his level of damage and proceed from there. If he's working and doing alright just now it doesn't sound like he's in imminent need of a transplant - many patients will but it may be a long way down the line yet.
Go ahead and get married, make your plans. That's what we did, we were just engaged when my hubby fell ill, I thought we'd have to do the hospital wedding thing because he was so seriously poorly but thankfully not. We had a quiet wedding in August 2012 in our local church and we just had close friends and family back to the house afterwards for a buffet and 'garden party'. Our guests all departed about 9.20/10pm and we were able to collapse exhausted into bed. We have learned to make the most of the good days - the bad just need to be written off. My hubby gets very low because he can't work and his life has changed so significantly but we just have to perservere.
A couple of bits of advice - keep on top of the doctors, don't be fobbed off, make sure you chase up any appointments you feel he needs (sometimes the squeaky wheel gets attention!). Take a notebook with you to all appointments and make a list of questions before you go, making sure you get all your queries answered before you leave (and make a note of answers). My hubby and I do that at every appointment so we don't leave the room and spend weeks wondering about an answer we didn't get.
Fingers crossed doctors get to the bottom of things before too long and you can get on with life just being mindful of the condition.
All the best, Katie xx
Hello Katie,
What is autoimmune Hepatitis?
Please enlighten me! Zsuzsanna
Auto-Immune hepatitis is basically liver inflammation (hepatitis) due to the bodies own immune system malfunctioning leading to the immune cells recognising the bodies own cells (in this case liver cells) as foreign bodies leading to the immune system attacking your own cells. This can be treated by knocking out the immune system by using immune suppressant medication. In my husband's case his had gone un-noticed and without giving out any symptoms until his liver had already turned cirrhotic. The British Liver Trust has a page on AIH at :- britishlivertrust.org.uk/li...
Katie
Hubby Peter is recently diagnosed with cirrhosis and portal high potension was warn not to fly until banding of varicece had heals bit unfortunately is too ill too leave hospital yet but chin up with luck and love things will work out x
Claire,
Firstly don't worry. You will need to be careful about going on an airplane at this stage until you are specifically told he can. Definitely no long haul flight.
With liver transplants they are prioritised by medical emergency needs, irrespective of your position on the list or the various antiquated scores they use as indicators e.g. Meld score.
The heptologist or relevant liver specialists should be able to run tests to establish what stage of the cirrhosis your partner is at and then give you an indication of longevity.
He will do pre transplant tests and if he isn't already he'll be placed on a list. Once on the list it simply takes time but if his condition rapidly deteriorated and death was imminent they will prioritise him for a liver. Basically they won't sit around and let him die. But you guys have to do your part. Needless to say absolutely no alcohol, good diet and take the medications they prescribe.
I'd be very cautious with the travel unless it's a short trip. Portal hypertension basically means the portal vein (the largest vein in the body) is stretched to the max and cabin pressure in an airplane will further enhance that.
They have greatly improved the treatment of cirrhosis and liver transplant surgery in the past two years, so as long as he is careful and does the right things he'll be OK.
Don't worry, I know it feels very scary but everything will be OK.
Wishing you guys all the best.
A survivor
I hope you don't mind me jumping in and asking a question about your comment on portal hypertension and flying. I had a massive bleed 2 yrs ago had some banding done but I haven't had an endoscopy since. I didn't know flying might be a problem. Are you always at risk after you've had a bleed? I guess you can't tell the state of your veins unless you've had a recent check? I haven't flown since as i lost my confidence to go abroad but am starting to think about it but now, I don't know!
😬😬
Hi Dooley,
The advice I was given at the time was no flights over 1-2 hours unless I had banding done on the veins. The danger is that the cabin pressure can cause haemorrhaging in and around the portal vein and of course a plane can't simply pull up to a hospital if anything goes wrong at 30,000 feet.
Hi Claire,
I can't really offer advice as my son is only 17 but I do know that whirlwind spin that you are in with no control. Our journey is in the early stages diagnosed in March AIH, PSC & Chrohn's but with a cocktail of drugs he is doing well.
Katie has given you sound advice and has clearly been in your position....I found realising I wasn't alone was such a help as in my experience the hospital was pretty ill equipped to help my son.
It's OK to cry it's OK to laugh....if your holiday is very soon see if you can sell back or delay....rather than lose 100% we got clearance on the Friday for our Caribbean holiday on the Monday. ...it was a treat trip we had saved for following his great gcse results! We did get insurance but it was expensive and tricky as they ask about hospital submissions.....he'd only had 1 but it was for 4 weeks and all diagnosis together.
If you cant hold off maybe get somewhere beautiful here....our fave is mobile.argyllselfcateringho... some beautiful cabins and bungalows....speak to the hospital they won't make a decision for you but can offer direction/advice.
Take care....know you aren't alone. It is scary but you will battle through because that's what we do with any situation.
Lisa xxx
Morning clarey73
I am finding it a little odd that they performed surgery but didn't find it until a CAT scan, i'm hoping this could be just pointing to "early CIrrhosis". When they open you up for bowel surgery they should have seen the Liver, unless they just didn't pay any attention of course.
Cirrhosis is not reversible and it is spreads over time, but it does have several grades in itself. Child Pugh is scoring system to indicate the level if severity , A,B and C, with A being the better grade to be on. This is something that you need to ask doctors shortly.
It may not be connected to his partying days, most people in the UK party in their 20s and 30s, its usually heavy daily drinking for decades that causes Alcoholic Cirrhosis. His bowel problems could be the cause, leaky gut is a possibility. Some times the bowel wall is thin and lets toxins into the blood, these toxins need to cleaned out by the Liver, over time the Liver becomes stressed and then damaged. A liver doctor is who you need to see and they will try and find the cause, but usually Cirrhosis takes decades to form. Damage could have been occurring in his 20s as he was partying. Alcohol could have made his bowel condition worse of course. All ifs and buts, but im sure your doctors will have some useful opinions about this.
Nobody can tell give a life expectancy until more is known, if he is Child Pugh A and the cause of the damage is stopped he could have decades. I remember Andy Fordham the darts player who went into "end stage Cirrhosis" through drink, he gave up the drink and is still alive and playing darts today with his native Liver, must be around 10 years now. Not bad considering he had about 6 months to live initially and was on the emergency transplant list.
AyrshireK has been on this unwelcomed path for some years now and you can now learn from her. Its time to get ready for a time of learning and life style changes, Cirrhosis does cause alot of stress both for the sufferer and the carers, try not to forget about yourself in all this.
I am hopeful that the fact the Cirrhosis wasn't picked up immediately indicates that it is Child Pugh A.
I would also clear the holiday with a doctor, flying can affect blood pressure and insurance needs to be sorted out.
Hi Claire,
I can't really add to what has been said already as I haven't reached that point yet.
Be sure to take a list for specialists appointments of any questions you have and make notes or ask where to get more information from to explain the gobbledegook it will sound like at the time.
I just wanted to say welcome to family. I mean that. There's always someone for advice or support or even a good old rant when things get too much.
Things will get easier once you have more information as the initial shock will have your head rocking.
Take care of you as well as him you are both important in this process
X
Hi Claire, I'm so sorry to hear about your husband I can't imagine how scared and lost you must feel I feel so much for you both I was just diagnosed with PBC and told I wil need to have a liver transplant in about 7 to 12 years it really freaked me out but the consultant was amazing he explained everything to me and told me after I have the transplant I'll get another 15 yrs or more next time you go to the hospital write down all your fears and any questions you have I'm sure they will be able to ease your mind a little I know how hard this is for you both I was terrified at the thought my little girl would be left an orphan she's only 7 but after talking to the consultant the fear and panic has eased I wish you both the best for the future and hope once your husband has had the transplant you will have many many more years together keep strong it's not weak to cry or scream don't feel guilty for being distraught or feeling helpless talk to your own dr they may be able to help you as well good luck to you both X
Hi, Hardest thing to do is stay calm , this is important to stay stress free. Take on issues as they happen , don't look for problems which may not be there. Stay positive and ask questions there is a wealth of information on this site and a lot of good people to chat to . Take care and remember we are here .
Hi Claire, I think Katie's response covered all the key points and writing everything down really helps and don't be afraid to ask what sometimes seems like silly questions. There is a wealth of knowledge, experience , support and compassion. on this forum and it has certainly helped me ....wishing you all the best x
I've just read through everything here and haven't anything really to add, except it is such a real and valuable resource to be able to share knowledge, experience and feelings - I am new here, my husband has cirrhosis and I recognise the awful first shock of diagnosis and wondering where we go from here...I agree that you must be assertive when it comes to doctors etc., finally we have an appt with a liver specialist and his GP is now monitoring him re bloods etc (he became dangerously anaemic). Be very definite with them and find out as much as you can about the condition/the jargon so you can ask for what is needed...all the best, I hope things work out and a big thank you to everyone on here xxx
Hi Claire 😀
Sorry to read your unfortunate story. I can feel your worry and panic through your words. Katie is invaluable on this site. I personally do not know what I would have done without her kind words and sound advice.
Keep in touch on here, I'mcertain that it will give you comfort and reassurance.
Take care,
🍀
don't worry to much ,I couldn't walk or hardly talk ,I went to the doctors 5 weeks ago,he told me I had cirrhosis and needed a transplant ,I looked up on the net,and asked others ,I now feell quite,good I was light headed and thought I was going to die to ,you need to drink at least 2 litres of water a day ,have 3 meals morning afternoon and evening ,I also take vitamin b the doctor gives you that ,I have a common thing the recommend called cumin ,milk thistle is very good garlic ,no salt and sugar and exsersize is very important,walks at first, then faster walking helps ,I do it every day,and now I feel quite good ,google up ,cirrhosis and cure it will tell you what I have ,you can change your life if you manage it properly but no alcohol or you wont live long take care mike
I was recently diagnosed with portal hypertension. I'd say flying is not a good idea without clearance from a doctor. As stated in another reply, the risk of a varacies bursting and internal bleeding is too high.
I had a transplant last year. I was on the waiting list for three and a half months. It all just depends. I was at Addenbrookes and have received excellent care prior to during and after my transplant. I was sick for three and a half years before I was transplant last October. From what I hear there are great hospitals and consultants all over the country and Ireland Scotland, Wales etc.
I know your scared..that's ok, it's normal. But breath. Just breath.
There are some great people on here and lots of good info and support. It sounds like you are dealing with a multitude of issues.
I'm sure you know this, from the past health issues. But write all your questions and concerns down. Take notes at doctors visits. If you need too, get an app and record what they are saying so you can go back over it.
The transplant list and getting on it involves testing first and then signing papers. Etc.
Everyone else has covered a lot and I learned a lot about the portal hypertension that I did not know! Lol..
Please keep in touch and let us know how your going.
Like I said breath..oh, and a very low sodium diet is what is needed for most liver disease. Freshly prepared meals are best.
Cheering you on and thinking a good thought for you and your partner!
xxx
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