This is my first ever post so please bare with me.
My husband has Cirrhosis due to NAFLD. Over a 2-3 year period he has lost weight and has been managing his symptoms relatively well. However over the course of the last 10 months he seems to have deteriated in energy ( sleeps alot) , HE episodes ( hospitalized) leg , hand and finger cramps , balance issues ( falls) loss of appetite and leg swelling ( fluid) which ha affected his walking . His recent blood test says his Liver function has not changed ( which is great) but I'm finding it hard to understand how his symptoms are worse but his liver function remains the same ? ? ( CT , MRI and all manner of tests have ruled out any other illnesses)
Just seems strange to me although I am still learning with this awful condition.
Everyone please stay safe 🙏 and healthy
Thanks A x
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I'm sorry to hear about your husband's ongoing condition. May I ask please, how long ago was his last MRI? How about medication is he having to take a lot of medication?
The other thing you might want to look into is that due to covid, many people aren't getting out very much. This could lead to a lack of sunlight which in turn could cause a Vitamin D deficiency. Please take a look at some of these symptoms and see if any of these are simular: patient.info/bones-joints-m...
It could be that his liver is struggling to carryout some of the 500+ different functions.
The MRI was over a year ago - they were checking for manganese . All was OK. He is due to see the Liver Consultant on Tuesday so hopefully he can get to the bottom of it. The vitamin D deficiency is very interesting as he does have some of those symptoms perhaps he can investigate this further.
Its such an unpredictable disease to live with at times
Many thanks Annette, for your reply. I should imagine your husband is due another MRI. He should be checked for any possible tumours developing on his liver. While these might not cause any real problems, they should be dealt with as soon as possible.
I should point out that most liver tumours are benign so there's no need to freak out. It's just one of those things that need to be ruled out from time to time.
If you find the time, make a list of any questions you need to ask the consultant on Tuesday. Is this a gastro or a hepatologist consultant?
It’s a hepatologist consultant apt. He requested one after speaking to a Liver specialist nurse as due to COVID it’s been about a year from when he saw one and given his current condition thought it was prudent to request one. He had an endoscopy and a ultrasound about a month ago and was told all was ok ( good news) His legs are really swollen ( right one more so) and his balance is shocking ( he has fallen a few times) and lacks energy in his legs to get up and about . He was in hospital 3 times with HE this year but they have increased his meds to try and stop the HE episodes and so far so good other than the issue with balance/ legs.
I have been keeping a diary from March which charts everything to show/ask the consultant. Fingers Crossed we do get to the bottom of it as it is affecting his mobility badly .
Thanks for your input it is good to talk especially at this horrible time everyone is having.
One of the questions that I would ask the Hepatologist on Tuesday is about your husbands HE condition. One of the problems of HE is knowing when it stops becoming a liver condition and becomes a neurological one.
Most GP's Gasto's and hepatologists just prescribe lactulose and certain drugs to reduce the amount of brain damage being caused. What they often don't do it find out how much brain damage has been done. This is often no longer the hepatologists problem as it is now a brain problem.
There is a test that doctors can perform, this is called. The West Haven Score. This can indicate as to how much damage has been caused. Ask the consultant on Tuesday about the West Haven Score: nice.org.uk/guidance/ta337/...
There is another test which I rather like, but sadly it's not used in this country. It's called, "The Animal Name Test" (ANT). This is where 38 cards with pictures of animals on them are laid out on a table. The person has to try and name as many as they can in about 40 seconds. It may seem easy and most people will know the very easy ones like a dog or a cat, but a person with HE may struggle with a Hippopotamus or a Giraffe. By measuring where they begin to struggle, gives a good indication as to how much brain damage has been caused. This article explains it well. It is in German, but you can change the language to English: medical-tribune.de/medizin-...
Most people who experience mild symptoms of HE may be able to gain most of their normality back as the brain can rewire its self. However, some damage may become permanent. I have spoken with many people whose partners have had HE and they all say that the person doesn't appear the be the same anymore.
These are some of the points I would raise with your consultant Annette.
Thank you for the information. Let's hope he gets some answers on Tuesday and yes i would say my husband is not the same person . I was hoping that what he is experiencing now is not related to HE fir obvious reasons ...😒.
Hi A. I’m sorry to hear of your husbands increasing health problems. The different issues your husband is having is definitely pointing toward a poorly liver. Energy depleted. H.E. Balance very dangerous. Cramps. Oedema. Loss of appetite.
I was diagnosed with decomposed liver after liver and kidney failure in April 2019. I have had every one of those issues your poor husband and yourself are living through right now! To say it’s horrendous is an understatement.
There is no way your husbands liver is functioning well and do not let any test or doctor convince you otherwise. This is not your imagination this is,as your well aware, terrifying and upsetting....but...never underestimate your livers ability to get back in the game and recover some modicum of health. I know this because I am, by the grace of Jehovah God, living through it.
It is easy to say go back to basics, but think about when your husband was a degree better than now. Think of diet, medication, exercise, rest...has anything changed? For your husband, the dizziness and the H.E. totally destroy any quality of life there is to be enjoyed. You become scared to move.
I would be interested in the consultants view on Tuesday, please let us know. If you want any help with any of the problems, there is a plethora of individuals on here who will be all too willing to help you. Please take care.
Thank you David . Unfortunately I had to call an ambulance at 4 this morning and he is currently in Hospital. He was completely "not there" and very unresponsive. Its very hard to see him like that. I so hope he finds some level of normality as what and how he is now is sole destroying to watch . The doctor has just called and they have completed a head scan and given him vitamins( dont know what one or if more than one although I think previously he was given K) They will keep me up to date as the day unfolds. His last episode was end of October last year and from then he just seems to have went down hill. I'm unsure if he will see the consultant while in hosp or will be home in time to keep his Tuesday Apt. I do fell so helpless when he is "not there". If you and probably many others on here are living through this then let's hope some of us find what helps for us all.
I am following this as I could of wrote this about my husband exact same he has decompensated cirrhosis and gone down hill in the last 10 mons after his first episode of HE hope you get some replies
Its just so difficult to watch isn't it ? I so hope your husband keeps well and you to.
It's difficult for the person suffering, ofcourse it is, but watching and dealing with it is uterly heartbreaking 💔. I'm so hoping he comes out of hospital much better than he went in ..all I would luv is the man I married back but I'm as determined as I am distraught to get the best meds, diet , exercise, care for him that i can .
The hospital have not called yet other than to say he was on the receiving ward and the intention was meds and to see the consultant.
I will post an update later but please everyone stay happy and healthy.
My hubby went into hospital yesterday as his foot swelled up and went from a bruise colour to black, no injury to foot, dimer blood test high so scan on it to see what going on x hope your hubby home soon x
Hi. My thoughts and prayers are with you and Annette and both your husbands tonight
It was a period of Crete a few months but the people close to me did not think I was going to make it as I was showing the symptoms your husbands are And had lost about four stone in about three weeks.
I know people normally say that they could not be in a better place when it comes to hospitals, I do not think that is true. But in this case when there are things going on which you just cannot put your finger on what’s happening, then being on a liver ward will give the hospital and liver team time to get to the root of problems that they never would have got if they had stayed as outpatients. As is usually the case, let us hope they do a fantastic job and both of you will be welcoming your husbands out with much improved health in the coming days and weeks.
Thanks David , I'm 100% sure he will be on the phone to me 2morrow wanting to come home - he hates being in hospital and when he comes home he has no knowledge of anything before a certain point . Hepatic Encephalopathy is just so cruel . Take Care A
Thank you I'm expecting phone calls from him 2morrow when he, as I put it, " back in the room" . I do hope everything is ok with your husband and he too is home safe and sound sooner rather than later . Take Care xx
Yes he has been on meds for 2-3 years now . Lactose - dose was increased after his last hospital stay at the end of October with HE, Refaximin x 2, spironolactose and furosemide. He has called from the hospital and still seems a bit sleepy but alot better than he was when he went in thats for sure . He has had an abdominal scan today and is waiting to see a Consultant to see what's next. Unfortunately he is not mobile at the moment. A
No consultant visit but a junior Doctor one. He has now had a CT scan of his Liver ( results pending) been given 3 x Bannana IV bags and a physio visit. They have not changed the doseage of his HE meds but rather his times for taking his Lactose. Before was 7am, 2pm and 6pm they are now 7am, 6pm and 10pm. Wonder if this HE episode or the loss of power in his legs has been caused by lack of vitamins/nutrients due to the timings of eating and then taking his Lactose ? ( after breakfast , lunch and dinner) 🤔 mmmm . Does everybody have different times for Lactose? . I have asked him to find out what they beleive may have caused this episode and have also giving him a list of 7 questions which he assures me he has shown to the junior doctor who in turn was off to speak with the consultant. I have to say tho the CT scan was ordered after the list of questions were asked. One of his water pills - furosemide is also being changed which i assume is to help with his swollen legs. I do take my hat of to our wonderful NHS tho and do beleive we would be in a much much darker place right now without them in our corner. Take Care Peeps. X
Just a wee update , Hubby was eventually discharged from hospital. His water pills have been increased and he has been referred to the Edinburgh transplant team - I hope this is a good thing as I am a little anxious about what to expect from them. His mobility is not great tbh but he is doing ok and now has an outpatients hospital apt to have his blood checked - these apt will be regular to monitor his condition. So fingers crossed it is all going in the right direction for now. Thanks everyone and stay safe. X
Edinburgh team are fantastic, my hubby is under the doctors there having first been referred to transplant team in 2013. First appointment is usually a full history and then they'll decide where they go from there. It sounds like hubby is in the area of at least being ready for transplant assessment and at Edinburgh it's done as a 4 or 5 day inpatient stay with all tests and discussions carried out during that stay with the multi disciplinary team meeting on the Friday to make decisions.Edinburgh has the most specialist liver doctors in all of Scotland so also look at other options if transplant isn't currently an option, they also have the excellent dietician service and all the other specialists on team.
We've attended clinics seeing people unable to walk the length of the room to get weighed etc so hubby won't be anything that they haven't seen and treated before.
Oh thank you Katie 😊. Hubby is a little anxious and me to as to what to expect so this has put our minds at rest . Sounds like it is all in the right direction for now . Thanks again. X
My hubby was under the t/p team for a year with them taking over hubbies care (we are in Ayrshire so it's a long haul but well worth it for their expertise). Hubby was assessed for t/p in 2014 though during the assessment they discovered he had some aneurysms in his splenic artery and Edinburgh team did an operation on that to rectify that before hubby was put on list. He spent 10 months on list, going over there every few weeks for t/p clinic and eventually he improved a bit which took him out of criteria for transplant and he was delisted in 2015. We were scared they were just going to bin him back to local, overworked and non liver specialist gastro but one of the amazing doctors at Edinburgh has kept hubby on her books so we generally see her once or twice a year (for endoscopy and consultation) and still see local gastro too.
Hi Katie , I'm about 40/45 mins from ayr and about 35 mile from Edinburgh so not too far away thank god . Sounds like your hubby is in safe hands and is doing well 👍They are such a worry aren't they? My hubby did not have any symptoms at all . He passed out at work one day about 3/4 years ago and was taken to hospital . After a blood test they confirmed his Liver results were not right and his platelets were also very low. They referred him for further tests . After many many tests, scopes, bone marrow ect...he was given the diagnosis of NAFLD with an enlarged spleen. I would say in the last 10 months he has really went downhill so I'm encouraged by the referral to the t/p team. Hope it will happen sooner rather than later . Stay safe and thanks again ....xx
My hubby was also diagnosed out of the blue (April 2012), in his case he was vomiting blood due to burst varices. His condition has been deemed as being due to Auto Immune Hepatitis which is burned out.Thankfully has never suffered from oedema/ascites and his HE is deemed mild which is why he was only 'borderline' when listed for transplant and improved enough to come off the list.
Certainly is a worry, we always take our touring caravan over to Edinburgh for appointments as hubby gets too fatigued (as do I really) to do the journey there and back in a day and often his endoscopy appointments are first thing in a morning. We have a wee cat so she travels with us so we can't do B&B or hotel etc. When hubby was on the list we sited our caravan about 15 minutes away near Prestonpans so I had a place to stop when hubby was in hospital etc.
Edinburgh generally see folks within 3 weeks of referral though that may obviously have slipped with their covid work. Hubby hasn't had a consultation at Ayr or Edinburgh for a year now.
Thats a great idea with the caravan !👏. We have been talking about may be purchasing a campervan at some point but for now its just a wait and see what happens. Unfortunately my husbands HE episodes are bad . The last 2 have saw him semi conscious and unable to walk 😪. But we live in hope that things can hopefully improve 🙏 . Do you know i to have cats ...both are about 10/11 now . Best Wishes ...Annette
Can't believe it and so upset hubby is back in hospital with another HE episode after only being out of the hospital with the same thing 2 weeks ago, no warning of it and it was very sudden ...my fear is his meds aren't working what next ? I'm so upset for him . 😪
Any word of the Edinburgh referral yet? It is possible for them to transfer an inpatient to Edinburgh if needed so as this is becoming urgent i'd certainly ask about that.
Definitely, you should be able to request a chat with doctor on current ward and ask the question about referral and possible transfer to Edinburgh - no point him being local you want him getting the best possible care from the real experts.
I would encourage you to make calls to the local hospital & Edinburgh yourself. After a recent stay on a liver unit, I can tell you that the heps made one visit in the day to the ward. If you were resting/ asleep they didn't stop & they didn't come back. So no info from a dr all day.
The doctors on the ward are usually registrars, so not decision makers. They don't come to see you unless they are told to do so. A lady next to me had been in a local hospital for 10 days before being transferred to us, at which point she was jaundiced.
You will need to be proactive. Beds are in short supply, but high demand. I encourage you to keep phoning until you find out what is going on. When you speak to the ward sister, they will need permission from hubby to discuss his details with you, just so you are aware.
Thanks. I do intend to be very proactive and speak directly to a Doctor at the hospital then progress as much as possible from there. Just now he is more himeself although his speach seems slower . He is currently awaiting an ultrasound scan and is still in the receiving ward and apparently they want to monitor how much fluid is going in and how much is coming out . Once he is moved to the relevant ward I will request to speak directly to the Doctor as I have a few questions to ask (with his authority ofcourse). Thanks again A
Sounds like progress is being made. I would encourage him to ask for feedback from the person doing the scan. Most are happy to give feedback( they don't have to), but docs will give bare minimum of info Hope things pick up very soon🙂
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