I had surgery a little over two weeks ago. I have developed hepatic encolopothoy (Hoping I spelled that correctly)
At first I was super tired after the Tipp's shunt. So, they put me on an antibiotic for the toxins specifically in my gut. That was to clear those toxins. For a few days it worked really well. Two days ago I started getting sleepy again, with some confusion.
Yesterday, I slept literally all day long. When I work up, or, my partner got home at 9 pm & woke me, I got really angry at him, as I was was sure he was trying to upset me, or purposefully trying to confuse me. After a little while, I realized that he was not. That I was, in fact, very confused. I Slept all morning and all afternoon & evening, after not sleeping night before.
Today, I just kinda of woke up after sleeping in my chair, again, confused. I have been awake again for a while now and am feeling better.
We go to clinic on Monday again. I'll tell them then. And then I am determined to go on holiday on Friday for a week, to Glastonbury. I have not been on holiday for two years. I really need a break.
I just really need a break. I have to have one. I'm just reporting this to you guys, so you will know what's going on with me.
I am pretty scared, to be honest. Terrified. Sighs.
I can't believe this is happening to me now. I'm so angry also. It just figures, doesn't it?
Sighs. I'm trying to remember to be grateful for all the good and wonderful things in my life..but gosh...this sucks.
Hugs and love to all of you, from all of me!
Your American Pickle
xxxxx
Kimberly
Written by
dckimberly
To view profiles and participate in discussions please or .
hi Kimberley yes that word is hard to spell and even harder to pronounced encephalopathy i find it hard ,,well look here ok your gunna be fine pma positive mental attitude ,,,,look after your diet get those toxins out of you ,,,yes go on holiday sounds nice where your wanting to go ....and do just write and tell us all we love to hear your stories and thought and we are all here for you ,,lots luv n hugz Matthew
ps, im 186 days sober today .....i need a new liver so will be pushing for that.
I'm taking the lactulose 2ce per day, 10 mil each time..
Also, did you see my congratulations to you? for your 186 days sober!! Your a miracle! You truly are! YAY!!! Everyday will add up to months, then years..my 8 years has just flown by. I'm such a different girl today than I was!! Even though I have this liver disease, I have sooo many good things in my life..like having great relationships with all my family, especially my kids..and I lived long enough to see my first grandchild..little Henry! I got to go back to University for Anthropology. I got to fulfill a childhood dream, becoming an artist..so many good things!
Keep it up..I could not be happier for you if I tried!!
xoox
cheers!
kimberly
Oh you poor thing. HE is awful Hubby's been in tears before cos he doesn't know where he is due to an episode of HE. Heartbreaking.
Have a lovely holiday it will be good to get away.
Hi kimberley...anger can be part of he...also sleepiness confusion poor memory.lve been getting crosser than normal.also forget what ive told to who.peoples names etc .sleepiness...could fall asleep anytime except the right time!!!!
Consult thinks ihave mild enceph...so if yours is severe no wonder you feel like you do. Did you ever have he before your transplant?
As you say make sure you tell the clinic about these new problems.as it could be a sign of progression that your txp is struggling more.
Hope you get a good holiday.highly recommend somerset as i live there.much love.cazer.xxx
Hi again pickle....love that nickname its what we call our daughter sometimes.
If you fancy a nice shopping spot try clarks village its usually got lots of bargains.
Also wells is nice with yhe cathedral and bishops palace it has a lovely garden but might find it a long walk...i would use a wheelchair ir scooter if i was doing the whole garden.they have a nice cafe and toilets as well.have a lovely break.xx
And yes, that is exactly what is it from, the Tipp's Shunt has this side effect. It's the main one They had already warned me prior to surgery. That is why I never wanted one last time, before my tx. HE is something I have always been frightened of, having dementia type symptoms.
Sighs, ok. I'll ask. But I'm afraid of the answer. To be honest, I'm not sure I'll care. Lol. I'm just to ready for a vacation. Is it near a hospital? Fingers crossed, my friend. I can't wait to see those quirky shops, and since anthropology is my thing, it's on my bucket list of things I want to see before I leave this place. You know?
Well, think a good thought for me, that they get it under control and I get to go!
Definitely go on holiday as long as you're in this country you'll be fine. Just don't go trekking up any mountains or anything like that. Lol.. having a change of scenery can make the world of difference.
Hi Kimberley. I don't blame you for feeling angry, frustrated and all the mixed emotions, you're only human and you've been through so much. Hope they can help sort out the HE on Monday before you go on holiday. The break and change of scenery will do you the world of good. Love Glastonbury, enjoy K.
Oh our pickles, what are we going to do with you? Thanks for posting and updating us all, we do worry so about you so much. You,ve sort of become our mascot!. I wanted to message and find out how things are with you, also to pick your brains !!!!. But was worried you might not be feeling too clever and knew you,d post when you felt up to it. As for picking your brains, several of us were talking about the current EastEnders storyline regarding Phil, drinking and transplants. Many people voiced how unrealistic it is and that it could actually harm the transplant programme as far as folk willing to donate etc, also it,s been brought up that the Liver Trust had apparently been involved in advising the pro makers. So, I messaged Admin to ask what the Liver Trust thought of the out come. Just had a message back that the C.EO would like my phone number to reply to my questions. I would like him to come on the site so anyone can express their opinions. Also, not having been in that position myself or had a partner who has, obviously there are a lot of people with much more knowledge than me. Thought of asking advice from yourself, Katie, jim, pear, cazer etc there are so many people effected by the issues around this. (H.E for example ). I will go back on the post EastEnders over weekend. It, was that darn Lizzie that started all this! if there are no volunteers I vote she can talk to the head of the liver trust! I only asked what they thought of the storyline!. ( I reckon the B.B.C ought to do a small documentary afterwards showing real people and what they go through with liver problems......or maybe at least read some of the posts we get here.... I think it was rodeo who said "now we have George Best and Phil as our poster heads! ) Oh sweet pea, I had so, so hoped that the tipps would work well but I know how worried you were especially about the H.E and the ascites coming back, I often think the worst thing with H.E is the knowledge one has it. Hope the pain is under control. and ascites? Praying you are well enough for that break kim. Right, I used to live in Glastonbury 2 mins from the tor and there is a hospital at " West Mendip community Hospital" Old Wells Rd, Glastonbury BA6 8JD. Tel. 01458 836450.. There used to be a liver ward there I believe, just rang to check for you and reception is shut ( small and local ) but hospital still there. Also Know of loads of standing stones, caves , etc but know you,re limited walking, so just message me if you would like to know anything, or can sort anything for you .You will love the crystal , incense shop in the old courtyard " Star child". Thinking of you pickles. Hope the family are well. Post/message when you feel up to it. Love anne x x P.S. sorry about the ramble. You have every right to feel angry. When I read your old posts so full of excitement after tx I feel like screaming, let alone you. Push to be listed again pickles, I know it,s daunting when you feel so down, try and harness that anger. xxx
And I think it's a great idea about the EastEnders thing & contacting the trust! My partner grew up on the East End of London.
Right now, I have swelling and fluid in my legs and ankles only. Not in my belly. A lot of itching also.
I seem to be ok after I've woken up for a while. I'm still finding myself reading the same thing over and over.
Yesterday was not too bad, although I slept all evening.
and, OH! We are staying right at Middlebrookes Farm, with a view of the Tor' !! I'm so excited. It has an indoor heated pools, a farm, of course..peaceful and quiet, with farm animals. and a tub!! Where I live there is no bathtub. I am dying for long bubble baths and candlelight! lol.
You must ask them to begin the process to get you listed - if not already. I've been worrying about you as the shunt is more of a temporary measure - so that they find you your donor liver. It's often the case that they do the shunt and then kind of dwindle over the transplant/listing procedure.
I'm praying so much for you to have your transplant soon Hun...
don't worry..I promise..we are going to ask on Monday what the holdup is. And if there IS a problem, then they should tell me. That's on my list. I think I have been afraid to ask..I think my kidneys might take me out of the game. We will have to see.
sorry to worry you dearest!
XXX
kimberly
Hi Kimberly , enjoy your holiday , we had no idea about HE until my husband had emergency TIPS , he was prescribed lactulose and then rifaximin which made a difference, he also had shunt narrowed when he was listed for a transplant again this made a difference. Diet is key , happy to share our experiences of HE ....much love xx
You said diet is key. Can you message me and let me know about that? No one has mentioned it at the hospital yet? But, I did just start showing symptoms, and have not met with my dietician yet.
Ah, I am so sorry to hear what a difficult time you are having. I hope these symptoms suddenly clear. Maybe right now your liver is fighting to perform and toxins are moving out at a slower rate thus the HE. Maybe suddenly your body can flush them out. I will be thinking about you. Best wishes for a lovely holiday. You certainly deserve it.
We think its a combination of the portal hypertension, as those small veins get blocked along with the toxins in my gut not being cleaned from the shunt..so it's double trouble!
Thanks you about the holiday!
I'm thinking about you daily..hoping for good news and lots of love and care as you go through your journey also! I wish I could take you on holiday with me!
Ditto to everything Pear said. Don,t get lost in the crowd, push now to be listed. Your kidneys shouldn,t take you out of the game pickles, may put you in one for the double though, but heck in for a penny in for a pound if that does become an issue. Have read some very positive results regarding liver/kidney transplants in Science News. It can actually be a benefit as far as rejection/recovery goes. You bug them Monday for answers. Hope you are picking up. p,s; have an old tin bath if you would like me to send it to you....and before you start giggling they were good enough for Queen Elisabeth 1..... love anne x
This was happening to my partner two years ago,when out of hospital.He didn't have tipps,but he had fits of HE after bleeding and ascites.They prescribed him lactulose 15 ml three times a day.Sometimes I gave him 20-25 ml,because on the bottle it says you can take 30 ml three times a day.The only side effect he had were gases.About the diet,I've figured out that if he just has these nutritional drinks and a little porridge - that's just not enough,he gets weak,pale and tired.So I push him to eat some starchy foods like mashed potatoes or pasta - it's fibre and also slow released energy from 'good' carbs.
He has no HE now (touch wood!),but sometimes,when he doesn't feel good - the first signs of it are getting angry,upset,mood swings.But I know that it's not him,it's an illness.
Big hug,
xxx
P.S. I always loved pickles.Even now I could eat a jar!
Kimberly, I'm so sorry this is happening to you, you really are getting put through the mill as they say, just seems like one bad thing after another. I'm amazed how you always seem so pragmatic about it all. You must have enormous mental strength to put up with and cope with all the things you've been through. I really wish I had an ounce of your strength, because I'm struggling with negative brain!!! I really hope the clinic appt helps sort things out, it is a recognised side effect of tips isn't it? So they must have strategies to deal with it.
Anyway, I hope you get to go on holiday. If you want any advise or tips about where to eat or what to see whilst. In Glastonbury give me a shout, I live about a mile from Glastonbury in Street, home of Clark's shoes!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I got to go back to University for Anthropology. I got to fulfill a childhood dream, becoming an artist..so many good things!
Omg wtf sos HE ?
My dad was told he had ald 4 years ago
hepatic encephalopathy preventing a transplant
Diet for hepatic Encephalopathy
