I'm new here and have been busy reading posts & thought I'd share some of my concerns too. I was diagnosed with pbc July 2015. In August it was confirmed that I have cirrhosis of the liver. Generally I've not been too bad apart from crazy itching & tiredness but this year hasn't been so great. Ascites started in January & is becoming a regular occurrence. The melena started in May & I've had several episodes resulting in a low blood count (54 in May, 67 this week) which leaves me quite weak & dizzy so now my gi is talking about a shunt but I'm worried about complications with surgery as well as the after effects (encephalopathy scares me rigid!) Does anyone have a similar experience to share?
Thanks for listening.
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Moopie
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Moopie, Are you in UK? your experience sounds not too dissimilar to mine, insomuch that things have moved quickly for you. I was totally unaware anything was wrong in Jan 13 by November 13 I was on transplant list, and had transplant Nov 2014 My liver was cirrhosised the first time they scanned in Feb 13. from being "well" in jan 13 I went through tired, dizzy, fatigue, aestetheties , (gained over 4 stone in weight) Gastric bleeds, and finally Hepatic Enchpalopathy, sleeping 18 hours a day, (mostly during daylight hours) itching ....
Everyones journey is unique! but you do sound like you are ticking all the boxes.
I don't know about shunts, but I am sure they know what they are doing? where are you?
Do you have support at home? My wife shared my journey (she probably suffered more than I did) the H.E. (Encephalopathy) in my experience was OK (some bloody aweful stories to tell, wife again took the brunt, but I was left without inhibitions, I went with the flow and honestly almost enjoyed the experience.....but I did rely on others around me and good friends to "understand" . Do you have HE? or are you just concerned you will get it? it happens in different degrees (each journey is unique) some hardly have it at all, others (me) had it dramatically.
Keep in contact on here, people are supportive, they will laugh and cry with you, offer some good ideas and generally act as a sound board to help you remember you are not alone. Good luck.
I'm in the UK, sunny South Wales. You do tell a similar story to mine, it started with an insane all over itch which gradually drove my hubby insane enough to drag me to the GP. I didn't feel ill as such yet the more I think about it, the more I realise I was having classic symptoms (fatigue, clumsy, insane itch, no sleep, digestive upsets, joint pain & stiffness etc, etc) which I chose to ignore cos they'd just go away right? Duh! My husband has the sheer delight of looking after me though I'm not too bad really. I'm still working 4 days a week but don't know how reliable I can be as I get worse! I have a large family but I don't think any of my siblings could do too much as they have enough to do themselves!
I am concerned about getting worse esp if I continue at this rate and even though I don't have encephalopathy, it scares me not being in control & losing it big time!
So how are you post transplant? I hope it was a success! Does your wife really have lots of embarrassing stories to tell?
Thank you for the reply, I was starting to get a bit down. Good to know I'm not on my own here
Well I am in even more sunny North Wales !! (we run a B&B) I gather Itch is how many females find out they have PBC (which is often well before men)
Good luck with everything, still working is good, fatigue got me soon after I found out, fatigue like limp lettuce physically and mentally, absolutley no chance of working ( I did but gently and with hours as able in the B&B)
Post TX I am well, normal size, (now need to watch what I eat, before I could consume what I wanted and liver failed to store any of it, now I can put weight on, drats! I have to watch what I eat for the first time, its hard insnt it!!)
I still get fatigue, I sleep every afternoon for 2 - 3 hours, but I am well, vibrant and ever so happy to be here. Fatigue post TX is not uncommon, (every journey is unique remember)
Keep us all posted, what is great about this site is that people care, you will always get a response to a post. People who have been there before you offer useful and helpful advice.
Embarrasing stories by the bucketful, some too stark difficult (and long) to say here (but I am happy to, just don't want to bore people) one short one :
Daughters 18th. out for a meal,Our Local Indian, on a special menu deal. few of Daughters good friends (who know me well) wife and other daughter present. One bowl of food untouched at end of meal , I ask if they will please put in a "doggy bag" they say no, as it is a special deal.....so I calmy (but with mischief in my eye) pull bowl to me, spit in it, and say well I hope you will not use that for someone else!
Daughter who is a tender 18 and with mates is mortified....(used to me misbehaving) I just felt it was the right thing to do, absolutley zero inhibitions, and I add, not the sort of action I would have done before or after H.E. induced by failing liver.....other stories involved the police (twice) and nearly 3 times......I had it quite bad, worse than most!
Hold on to a sense of humour! it is by far the best way through!
Thank you for that, you've cheered me up a treat! Your poor family though! Lol. Well it doesn't sound so bad, I generally hold my tongue & keep opinions to myself, brought up to be mega polite so look out world! Now where the hell did I put my soap box! (Poor hubby right?)
Hi, sorry to hear your experiences. I was in hospital with a bleed and melena for six days a month ago and only just feeling OK..did they not keep you in? Had a transfusion which helped although still have low haemoglobin. I had my varices banded and I go back in a Week for them to be rebanded and two weeks after...,so far no ascites although I saw some tiny spider veins on my stomach but I was told I didnt have them. I did look up shunts and I felt exactly the same as you....is there nothing else?
I felt fine with PBC for 22 years and then suddenly I had cirhossis .....I do feel sick and lack an appetitie and a bit low as this will go on for years and I am only four years off being allowed a transplant as I am 66..but being too thin I have to eat a lot of carbs and proteins and can't miss them!
Do let me know what you decide re the shunt and do some good research into alternatives.
Were you diagnosed 22 years ago? That's a long time to live with what feels like a ticking time bomb! How have you found the treatments available to you, have they improved much?
I went straight for cirrhosis cos I'm greedy that way! Was told I'd had it many years for it to have gotten to this stage. I'm 50 this November & recently feeling & looking my age. (& then some)
I was in hospital after my first bout of bleeding & subsequent melena for 5 days back in May & had 4 units & it took about a month to recover as acsities set in big time as I put on a stone & a half in a week! I've had several lesser bouts since of which they can't find the source. Awaiting a camera-oscopy as endoscopy & colonoscopy showed nothing so they think small intestines could be the culprit, hence talk of a shunt! Had two units this last week & asked them to leave me go home as I didn't feel ill, just weak & dizzy with a low blood count! I'm due to see my gi tomorrow morning to see how my bloods have improved & go from there really. It'll be hectic as he's back from his hols & has a lot of people to see so I think it'll be a quickie visit!
Hey ho, it sucks to be us some days. Happier to be part of a community though to be honest.
Do you really have to wait until you're 70 to receive a transplant? That seems like a terribly long time to wait. How are you dealing with it all? If I discover any alternatives to a shunt then I'll let you know
Hi Moopie, I suspect 'bobbycat' means 70 is the cut-off age for transplants, which is what it is here in Australia. I've already reached 70 so won't be eligible for a transplant.
I was diagnosed almost 28 years ago and am now at Stage 4 (cirrhosis), luckily I haven't had a bleed yet, though I do have varicies - must admit the bleeds are the most frightening aspect for me at the moment.
You have had a pretty rough time lately by the sounds of it so I am glad you have found this site. You will get some really good advice here.
I'm sorry to hear you've reached this stage without the option of a transplant. I know bleeds sounds scary & it's not pleasant but as long as they can get a handle on it then I'd like to think they can manage your condition. They put me on beta blockers to help lessen pressure on the varices, have they offered any medication to help you? I can't help but worry about what's to come but keep reminding myself to just deal with the here & now.
Varicies - I have been on beta blockers for years now (high blood pressure issues), and still developed the varicies. At the moment they are only Grade 1, so my Hep. doctor is monitoring them closely. I'm due for another endoscopy later this year, so fingers crossed that they are still Grade 1.
Hi..I also seem to come on this site as veramanning which I thought I has cancelled..hey ho.
DianneS is right...I meant you can't get a transplant over aged 70. So I have four years!
Was your bleeding through the varises? And did they band them?
I was diagnosed all that time ago but never thought about it really, ,I was told I would probably die still having PBC and not cirrhosis but......
I was told by consultant the other month that I would have a good 10 years but that was before bleed..,now I dont know. It does feel like a heavy cloud has appeared now...what will the future hold. I dread like you not being in control mentally.
Do you have support at home to help you?
I hope you get some answers from you GI. All the best
They believe the bleeds are due to varices but couldn't find any to band when I had my endoscopy so it's a camera-oscopy next, maybe small intestines will show something. It is such a slow process waiting for tests & results that it gets a wee bit frustrating at times. Hey ho, what can you do? Gonna phone my GP, update them from the GI appointment (different GI again this time, third so far, perhaps this guy will 'catch' the tests that still need chasing! Lol)
Hope your cloud doesn't follow you around for too long, it's only natural but seems like a waste of our time fretting about the things we can't control. I'm going to try to be more positive, hope you can join me.
Funnily enough I decided to live day by day after reading something moving on line yeaterday! well as much as one can so that my banding next week which I dread again is just that day and the day after will be a so so day but after to look beyond it......today we had a lovely morning outside at a sculpture exhibition in a beautiful gardens and it was very sunny and peaceful. I am a keen photographer and even the weight of my camera and lens didnt worry me. I live in the UK by the way.
Perhaps we need a group for those with cirrhosis where we share positive times....
Yes I had a shunt they call it TIPS put in for bleeding, about 6 months later I had a slow bleed so the put an extension shunt in, knock on wood have been fine for 4 years now, the procedure was quite easy, they make a small incision in the crease of the neck and do the whole procedure that way, lt was not bad, I can tell you if you have a bleed and you don't do something you will develop encephalopathy...as far as ascites goes, I talked my doctor into letting me try doubling up on my diaretics instead of having another drain, it worked...I hope this info helps...
Thank you for your encouraging words, it's good to hear you've had success with a shunt. The GI did advise that encephalopathy would only be an issue 'post shunt' if it was an issue 'pre shunt'! So as long as I remain relatively sane then I should be ok!
I've also doubled up on my diuretics as my GP advised that I could if necessary and it has definitely helped, I also have my boney ankles back again which is a big plus.
Sounds like your on the right track, I also found alot of other ingredients that actually taste really good without the sodium for my low sodium diet, even my hubby enjoys my cooking and can't tell the difference, it's helped him get his blood pressure back to normal without meds....
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