Hi, I have just been dealt a bit of a blow, following my MRI where I was expecting to hear news as to whether my bile stent needs to be replaced (or not) I find I have ischemic cholangiopathy such that the bile duct stem is not the problem, and the I.C. is untreatable, so transplant #2 is possibly the next step..... I am 11 months post transplant, feeling rather well, and still maintaining a very positive outlook, but quite shocked at what I have just found out.
Seeking others who may have been in similar situation, interested to hear others stories, I know each liver journey is an individual journey! but we all share a number of issues, and hence my desire to share others experiences! anyone out there ?
Charlie. Male, 61, PBC, suffered fatigue and H.E. really strongly pre transplant in Nov 14 feeling well now, awaiting for I.C. to start to mix things up a bit!
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Sorry to hear that Charlie, seems a fairly high percentage of transplants where this situation arises. I believe it was I.C. which led to Pearshapes's hubby requiring his 2nd transplant.
I am so sorry to hear this terrible news. My husband was told he had IC about 2 months post transplant. I have written in depth about it on this forum. Remaining healthy for transplant 1 was stressful but to keep yourself ready for number 2 will be a challenge - you must keep in touch with your liver team regularly to keep them updated. My husband was prescribed urso and cholostramine sachet to help support the bile flow.
Hi Robert sorry to hear your bad news and wishing you all the very best for the future. I just had my transplant after 4 no goes i.e. havin made trip to London from Northern Ireland where I live,4 times only to be told livers could not be used on me. But thankful that 5th time was the lucky one. Feelin great apart from few small issues namely kidneys function little bit out at present and few bowel probs but thankfully nothing major and am really starting to enjoy life again. When I look back now think I did have some degree of HE as always felt like some describe it " brain fog " few months before I quit work found it extremely hard to concentrate on the administrative side of my job and kept havin to check and recheck my work for fear I would make any mistakes, also had definitely what you describe as mood swings but at time felt it was frustration due to lack of my ability to do things due to havin lot of back and rib pain and extreme fatigue. I know a young fella of just 19 who had severe HE and had to be hospitalised few times his mum has spoken to me about lot of negative experiences they had as result of his HE I will mention you to her see if she wants to share stories with you. Bfn.take care. X
Littlemo : Glad your transplant is looking good, take it gently and enjoy your new lease of life!
4 trips to London? wow, quite a roller coaster for you.
Re. your friend who's son had bad HE..... I am going to a medical conference in Brussels on Monday next week 12th Oct called DeLiver where I am being asked to give a 10 min talk to conference on my experiences of HE - how badly affected I was and how well or badly the medical proffession understood my condition (mostly rather bad at understanding or even knowing of it! )
I would like to hear from your friend if she wanted to communicate with me, I am starting to champion the cause for those who have (and those who will) suffer from chronic HE, it really can be a terrible thing not just for the sufferer, but the sufferers carers probably suffer even more! (my experience was I was not too bothered, but my actions were a lot of trouble for those around me, my 2 daughters (17 and 19) suffered badly and my dear wife.......
Keep in contact, I may (hopefully) be looking at my second transplant inside of 12 months or so..... at least I know what happened last time!
Do keep on top of the liver team by regularly contacting and updating them on progress of your ischemia. My husbands scan had shown so much deterioration within a few months between the first and 2nd MRI. The itching and jaundice comes back with a vengeance... The next few months will be hugely testing for you. Does your hospital have complimentary team who can support you with massage therapy?
With all my heart I pray that you do not have to deal with the symptoms to such an extent and get your call soon...
Thanks Pear, how is hubby? I have seen various posts and know things were not that good..... what is latest?
My "concern" is about time I guess, I know nothing about I.C. (well I am learning fast about the technical details, and whilst I do like to understand the technicals, in the end that is the job of the experts) so my initial interest is now that I know I have IC (and accepting every journey is unique!) how did others fare? I am aware I might get absesses on liver as ducts die off, I know from experience what a failing liver can do (!!!) so how does it often progress? my imagination suggests if you are prone to absesses, that might take you to high up on transplant list, and if bile kills liver same thing, does bile killing liver generally take 3, 6, 12, 18 24 months for bile to reduce liver to near complete failure? does liver show the same signs it did when it was PBC attacking the bile ducts? (in my case from being aware of PBC (diagnosed by accident, but was going to manifest itself in 6 months anyway) was about 18 months to transplant... I guess this depends on how severe the IC is? or does it tend to spiral downwards with a similar speed for all sufferers? These are questions for my consultant I guess, and I guess she will say each journey........
Hubby is home today - discharged. So far doing well - will know more when they scan over the next few months.
IC is treated very much like PBC so using the urso and cholostramine etc to support bile flow. As the ducts die the strain on remaining ducts causes strictures to form which then have adverse affects all round. Bilirubin count will give a good picture of how quickly the deterioration is- yes all have individual experiences but the main things are rising jaundice, itching, nausea so very poor food intake and weight loss. Your liver team should have you as a priority now as they would know it's a race against time. The urgency should be at the front of their minds...
Thanks Pear, I shall look up strictures (not doing a mad google, but really like to be informed so consultants sessions are most informative)
I awaiting my recent bloods (first for months) and I gather I shall be having bloods at least monthly, depends on how its looking I guess, here is a question you may / may not know the answer to.... since I really suffered from Hepatic Encephalopathy last time, but did not suffer itch as bad as others, is this likley to be similar, or could I get itch but no madness (H.E.)
The H.E. was difficult to see coming as I am more than a tad eccentric when "normal" - well I like to think so anyway !
I hope "hubby" continues to improve, (always room for improvement from husbands my darling wife says !) send him my regards.
Just got my first Urso from pharmacy for nearly 12 months.
and what a lovley sunny day we have today, wife has me cleaning outside windows, need to keep fit and active she says, and I simply havnt got any argument, so off to whistle the when I'm cleaning windows song.....
HE doesn't seem to feature as the liver begins to compensate so decides which bits it needs to save and which bits it doesn't therefore reducing in size and your weight, muscle mass will feel the impact of this. The 3 common features are jaundice, itching and weight loss. Of course this may impact other organs - kidneys etc... HE is not ruled out completely as it all depends on how your liver copes with the ducts not working. Your team should be doing bloods weekly if not fortnightly - monthly is far too long a gap. Please insist on it as every time you have bloods done they are entered onto the transplant uk data base hence raising your profile on the transplant list. Also do not forget that the deterioration rate is very fast so the idea that they can wait around a month and then review is not acceptable.
I hear and take on board your good advice, thankyou, it is very early doors, but I take your point that we all need to be ontop of this as it can move quickly! I have not yet had my letter from clinic confirming what I was told (and informing my GP) When we started this 2 years ago and were refused access to a NHS consultant Angie and I called for monthly bloods at our GP surgery, and they aquiessed, so I dont invisage any problems here. You sort of answer one of my main questions, how fast can it "come on" or change (for the worse) and it seems the answer is rapidly!
So eyes open and bloods weekly once we see the slightest movment in the bloods.
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