Fed up

[bever01]

I haven't posted on here since we discovered my hubby wasn't a suitable candidate for transplant. He was prescribed riflaximin and lactulose which have saved my sanity. He is not well at the moment with an awful cough and despite taking both medicines yesterday he was very confused last night and very sleepy today. Is this par for the course? He is due to go in for a gastroscopy and banding tomorrow. Not sure what banding means as we didn't know he was having it done. Only found out when I rang to see if I could change his appointment. I find some of the process in liver cirrhosis very complicated and bewildering. Am I the only one?

[AyrshireK]

The sleepiness and confusion can still come even with the medicines you mention. My hubby is like that from time to time and sometimes it comes on really quickly - he's been on lactulose since April 2012 and Rifaximin too since June 2014. Some people find that Hepatic Encephalopathy symptoms can be worse with high meat protein intake.

The gastropathy/endoscopy is very much a routine check with cirrhosis patients it is a camera down the oesopagus and through stomach and duodenum to check for any signs of portal hypertension or any varices it may have caused in the oesophagus. If indeed they find any varices (which are like variocose veins in the gullet) then they band them by passing another tool down into the gullet which puts a band around the bulging vein to cut off the blood flow so that the varices doesn't burst. My hubby has had 42 varices banded and his are now obliterated after many procedures.

Most of us were just as bewildered at the start of our liver journeys but have learned along the way .............. ask away!

All the best, Katie x

[retwos in reply to AyrshireK]

Well wrote I couldn't have put it any clearer hope your all good n smiling AyrshireK

[Catfishjumpin]

Gosh what a complex disease. It affects every major organ. Banding works. It's for varices in the esgophaus so they do not swell, burst, bleed. I had 2. The first one was painful the second was not. I hope he has good luck and it causes him to feel better. For some reason I think his cough will get better after his procedures. I hope so.

[bever01 in reply to Catfishjumpin]

I did wonder if the coughing was to do with the varices. We've known he had them from beginning of the year. It's hard when you had a very good consultant who has no people skills. He knows what he is doing but doesn't tell us! I'm at a loss sometimes as to where what and how! They all talk about keeping him static and not letting him decline but don't tell us a thing. We were gutted about the transplant and came Home feeling as if we had been handed a death sentence. I learn a lot from here and fight for anything that will help him but it's not the easiest thing in the world. Still chin up and smile is my motto from now on... your replies are so good to get many thanks

[Catfishjumpin in reply to bever01]

Can you just thank the doc for the info then ask him to explain to you exactly what the terms he uses mean. These doctors are hard to work with. I look up everything. Like your husband I too am in dire straights. My liver cancer madtacised in my lungs. Suddenly they are full of tumors. I can imagine that you feel you have been given a death sentence. I do but then I have known for 14 years this disease was stealing my life force. I am 65 but I sure would like to see 73! Best wishes. Let us know how he is doing. I hope he can get more rest and experience some joy soon.

[bever01 in reply to Catfishjumpin]

I'm so sorry to hear about your disease. We found out just before Christmas last year that he had a liver problem along with other health issues. He has been struggling for years but nobody looked at the cause of all these other ailments. He is 63 next year and obviously wants to continue with life for as long as possible. Positive thinking sure is hard 100% of the time but my thoughts are with you as well. Please let me know how you're doing. X

[cazer in reply to bever01]

On what grounds did they refuse transplant ?

[bever01 in reply to cazer]

Problems with calcium in his heart so would not survive the operation. The consultant told us that he would die on the table and he was too high risk to even attempt it. That's not likely to change so they are looking to keep him stable as long as they can.

[cazer in reply to bever01]

So sorry to hear that.have to say that ive never heard of that .im 53just getting h.e.am going on antibio for h.e.

O have level 2varices.

In normal terms think of an old hosepipe running through his stomach with bulgy bits which might start leaking if you band off the hosepipe the fluid will find its way through a different blood vessel but if left may develop a leak which is dangerous as you can loose a lot of blood.

Best have them done as its one less thing to worry about.

P.s. how did they discover calcium?

Hope you like my silly explanation.

I yhink if you can manage it try and have a few treats/trips out togeather .much love cazer.xxx

[LAJ123]

I'm pleased to see you have had replies from people with both experience and knowledge. That is what is so good about this forum.

Make sure you make full use of the British Liver Trust website, especially the leaflets they publish, most questions are answered there. But you cannot beat first hand experience and thats where we excel.

Make sure that tomorrow you make it clear about the confusion and sleepiness. When I was at my worst before transplant, when I was beginning to get confused and disorientated my partner, Lucy would make me go to the nearby hospital NHS walkin centre On every occasion I was admitted and kept in until the mist had cleared. Nobody wants to be in hospital, but I'm sure all here would agree that the consequences of not having immediate medical attention can be serious.

I hope all goes well with the procedure and you get the care you both need. Please remember that the person with the illness is not the only one in need of support. Make sure you meet your own needs as well. He needs you to be rested and well so that you remain able to give the help he needs.

Take care.

Jim and Lucy

[Millie09]

Your never on your own on here , we're all in this together even if we all have different experiences . I can on my imagine your frustration , I Am the same and I have lived with this disease 9 yrs nearly and I'm still finding out new things . Hoping all goes ok ! Take care of both of you ... Linda X

[dckimberly]

Hi there..it is bewildering! Please see all the info located on this site about liver disease and procedures, and it sounds like HE or hepatic enchalopothy. I just started having it 4 months ago. I got it after a new liver transplant and then they found a rare type or portal hypertension. They put a shunt in,but because of that I now have HE. I take those meds also.they help, but often cannot cure HE. Which is terrifying..I wake up two days later unsure of anything..day, time, what I've said or done, etc.

I have had most things, and HE is the worst. As a patient with it, I can't tell you how scary it can be..I get scared to sleep, afraid I will go into a coma.

Can I ask..why is he not going on the list yet? HE is often a precursor..I guess they are hoping the banding will help? I had terrible ascites also..now I get it sometimes but go straight back on the. Water pills for a couple of days to help with that.

But please..read the info on this site. It's from the NHS. Not Google, where you see all kinds of misinformed people, and links to herbs they swear works.

Stick with real medicine.

By the way..I learned more about the hepatic enchalopothy on this site than anywhere. They will also have info on banding, etc.

Good luck and cheering you on!

Kimberly

[dckimberly in reply to dckimberly]

Also, they just told me last week they can get a nurse in to sit with me if my partner needs to sleep, or while he is at work..remember, a caregiver needs alone time also..it makes them happier, and quite frankly, better at helping their loved one!

Xx

[bever01 in reply to dckimberly]

Hi thanks for the reassurance that I am not on my own . He is not medically fit for a transplant and would not survive the operation. Because of heart problems this is never going to change so it's living day to day month to month etc. HE is the most frightening thing to witness. As a wife, to watch the man I have been married to for so long change is a nightmare. He doesn't know where he is and quite often at night time opens the front and back door. That scares me. I constantly get up and check him. I know it's not easy for hIm either. This is an awful disease xx

[Millie09 in reply to bever01]

Hi bever01, I am so so sorry to hear the reason why hubby can't have a transplant , i so wished there was something they could do , can't they do something to the heart at all , sorry I'm not very medical clued up on the heart as I have never heard of having too much calcium in the heart . My mum passed away to heart failure 28 yrs ago . She was younger than me now when she died , my sister has heart problems and is now undergoing further tests regarding one of the heart Valves . I don't know what to say apart from take each day as it comes together , sending you both big ((( hugs )) love Linda X

[bever01 in reply to Millie09]

Hi sorry haven't been ignoring the replies - been up to the hospital and had his gastroscopy and 5 varices banded. Back in a month for more.

The calcium on his heart is in the aortic valve and due to kidney disease and high cholesterol. It can't be reversed but can be controlled to a point by statins but they can cause more problems with liver function so he will be monitored closely.

Emotions are all up and down so how we would normally react to things goes out the window. I get so angry,hurt and frustrated when he does stupid things - not at him or because of him but at this disease that is taking him away from us. If you have never lived with it how can you understand. My daughters eyes were opened more when we went on holiday with her. But we WILL take each day as it comes, I will continue my solo walk up the lane to scream, shout and rant at it all and we will manage. With help, support and advice from you all on here xxx

[Millie09 in reply to bever01]

Hi bever01, please don't worry about time scale on replying Back . We are all the same here , especially me if I have several appointments to go to I can take days to rely back but I do in the end , so hubby has had the surgery today then , well it's good that they picked up on the varices and were able to banned them . That's less pressure on you at Least. Oh I understand now as to why things are , yes it can nmu be controlled but as you say statins can cause even more harm to the liver , I'm on sertraline and diazepam and both long term use they have an effect on the liver too . But it's one of them isn't it . Have to take Meds to treat other problems yet they cause another . Glad to hear he is being looked after well . Oh I can relate to your emotions , I was the same with my dad who had cancer twice , turned all our lives upside down , could not ever settle or relax as I was waiting and watching him when I took over as his full time carer , but you must take time for you now and again or it affect your health as it did mine . That's why I am on the medication to help me cope with everyday life . I can understand you completely as someone who has cirrhosis , you go out and rant as much as you like ! Get it all out of your system . We as a group are always here to give support to anyone , it's a great group to be in .. Keep

On touch . Linda xx

[Hidden in reply to bever01]

Hi

We are in a similar situation following a second stroke the decision was taken not to put my husband back on the transplant list , it is an awful disease and when the option of a transplant is removed it's difficult to see a way forward . HE is terrifying and I really can empathise with you ...I didn't think my husband would recover from the last bout which left him really incapacitated but he did ..... he required round the clock care from myself and with support from family we focused on what we could do in terms of diet , gentle excessive , routine and structure , we are in a much better place now .

I think the most difficult thing I had to deal with ( apart from the HE ! ) was the lack of support and understanding from some health professionals . Whilst you are on the list and under the care of a specialist liver unit you experience and receive a first class service , well that was certainly our experience but when you are discharged from that service the burden of managing the complexities of liver disease can be overwhelming . Kind regards x

[bever01 in reply to Hidden]

Hi

I feel so ungrateful for my thoughts following our trip to addenbrooks. A marvellous hospital with fantastic staff. I know we were there for an assessment and nobody could guarantee the outcome but we felt so positive with seeing people who had had transplants. Dared to think that could be us - back to a normal life and a healthy hubby. Did feel as if the rug had been pulled from under our feet but smiled and went home crying most of the way I might add. Felt we had been handed a death sentence. Like you, it felt as if all the promises about sorting this that and the other out to help stabilise seemed to have vanished. Our liver specialist was running late when we next saw him 3 months later and really couldn't be bothered. Nobody rushes - it's important to us to have a life with as much time as possible but doesn't, as you say, feel if anyone else cares. I will push with all my breathe to get what my hubby needs. It is very overwhelming. I hope your hubby is still doing ok. Xx

[Millie09 in reply to Hidden]

❤️❤️Xx bless you blue-bells .

[Lperica10]

So sorry he isn't a candidate for a transplant. It really is an AWFUL disease like you said. One that people don't know just how awful it can be unless they or a close loved one went through it. My dad was not a candidate for a transplant either and I helped him in his last months. It was the HARDEST thing I ever went through. I wish I had more to offer you but I just wanted to tell you you are not alone (although I sometimes felt like it and I'm sure you do). As far as the confusion my dad was on both the medicines you named. And the confusion came and went, the it'd come back, and then he'd be mean and angry, then he would forget, then he'd be "normal", then he would be sad and cry, it was all over the place with emotions. That was as hard as watching a loved one physically deteriorate. Then he would skip a dose because of the bathroom issues, or not take it consistently. It was so hard. Feel free to ask me any more questions. Best of luck. And take care of you too.

[Millie09 in reply to Lperica10]

Lperica10 . My deepest condolences ❤️❤️Xx

[Lperica10 in reply to Millie09]

Thank you I miss him sooooooo much.

[bever01 in reply to Lperica10]

Xxx

[Millie09 in reply to Lperica10]

Bless you xx if you ever need to talk , just to offload I am a very good listener . Xx