I have never posted on here before but I am planning to write about my mum soon.
My mum suffered from liver cirrhosis as a result of her diabetes (nash) and at the age of 53 on July 30th this year was fortunate enough to receive a wonderful gift at St. James's in Leeds in the form of a transplant.
Despite being so poorly pre transplant she has gone from strength to strength, a few hiccups including some early rejection (managed by increasing the tacrolimus) and a slightly open wound. She also bled quite a lot during surgery and as a result got a hematoma blood clot behind her liver which they have told us will be re absorbed over time? She also still has bad edema in her legs and feet but this is getting less every day the more she moves and raises her legs.
She was discharged last weds and we attended our first post transplant clinic yesterday. The doctor said how well looked.
So imagine our shock when she just rang us to say mums blood tests have took a turn for the worst. The ALT has raised from 71 to 342 and the ALP (ALK phos) from 560 to 1566?!! The White cell count is also slightly raised. The bilirubin and the others are ok but these two are raised so much
This seems massive and we are so worried. Does anyone have any experience of this and what was it? Or any other post transplant complications to share. Was this easily rectified Etc?
She mentioned it may be bile duct related where the bile is static?
Any help I would really appreciate and so would my family. We have only just got her back after years of being poorly
Kind regards
Jade xx
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Hopingformumxx
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I'm just chiming in here to get an answer in quickly but there will be people on this board with more knowledge and experience than me so hopefully they'll chime in..
The fact that ALP is quite a bit higher than ALT is indicative of a bile related issue. Apparently it's not uncommon post transplant for people to show bile issues. In cases such as this where the tests are showing a problem but there are no other signs (i.e. it's only showing biochemically) the problem can be at a level where it doesn't require intervention.
That said, it's something they have to investigate and if the cause can be identified dealt with appropriately. There can be a number of causes which vary quite widely so speculation at this stage wouldn't help all that much.
I very much feel for your situation and will hope for the best, clearly you've all been through a great deal and could well do without this. Hopefully the further investigation will show no problem or something easily dealt with. I'm sure others will jump in and correct anything I've said which is incorrect.
Very best regards.
Quite understandably, you missed an opportunity to ask your mum's consultant those questions and among your options is to phone the secretary and ask for a phone consultation and seek clarification of the issues you raise here. Failing that, wait until the next visit to Leeds - I assume these are still quite regular given that she only had her transplant 4 weeks ago. I agree with Mr X that speculation is unwise and given the care and concern you get from Hepatology consultants in Leeds (I am a transplant + 4 years with them), I am sure they will be willing to give you more information.
Mike (my husband) had the exact same problem after transplant. He had further tests and they found the where they had joined the new Liver on to the Bile Duct there was a restriction. This can be caused for several reasons but is usually either joined badly , a slight mismatch in the sizes of the explanted and implanted part of the liver that has to be joined ,or scar tissue causing a blockage.
He had to go through endoscopy several times when they inserted a stent to open up the duct. This had to be changed every few weeks, in fact they left the first one in too long and he ended up with Cholangitis (bile duct infection) which led on to sepsis. It did take a few changes of the stent over the next year and it did again rear its ugly head the following year. But now been stent free for around a year. He is nearly 4 years post transplant. Has your mum been prescribed Ursodeoxycholic Acid.? Once they are sure this is the problem that is the usual med given.
Hi mam can i get help from u regarding bile issue after transplant
Oh Hun xxx wondered how things were xxxx sending lots of love to you all ❤️❤️❤️❤️❤️❤️❤️ Rob didn't have anything similar until earlier this year and then everything calmed and then (I think I told you) he had temp and got admitted and was found eventually to have 'biliary sepsis' and they mentioned 'cholangitis' it was easily treated with anti-b and he had an ERCP - where they went into bile duct and opened it and stone was removed (and it was a big one) which they couldn't see on scans etc - maybe it could be this ?? She (and you) have been through so much xxx I always like to think of 2 step forward 1 back 😝 - it's a horrible journey xxx you have all done so well so far 😘😘😘😘❤️❤️❤️❤️❤️❤️❤️ let us know how she gets on xxxxxxxxxx Simone x
Thanks so much for all your responses I really appreciate it.
Mum was readmitted yesterday to St james's yesterday and was sent for the ultrasound scan and what was found was a narrowing of the hepatic artery the common bile duct which they thought was blocked at first is actually large rather than small.
So she has just gone down to have an angioplasty done to widen the artery and maybe put a stent in to open it but they will not know until they get in how narrow it was as the ultrasound struggled to find it because it was so hidden.
Has anyone had experience of angioplasty or stents after a transplant and how was it? Or narrowing of the hepatic artery?
It's all so scary but she is being so brave
Lots of love and thanks so much for all your help.
Still so sorry to hear this. I was hoping it was something transitory.
As I understand it - I'm afraid I can't speak from experience - narrowing of the artery (hepatic artery stenosis) is a relatively common complication of liver transplant surgery. There are a number of causes and a range of possible interventions for this - of which stenting is certainly one, and by all accounts the types of stent materials used have come on on the last few years so that they are much more flexible than they used to be - which is a good thing.
There are also a number of things that can be tried before stenting is attempted, but all of this, stenting included, really depends on the cause of and degree of narrowing.
Obviously she should have had the intervention by now - my sincere hopes are that it went well. With that in mind I'll add that as the liver units see this situation quite often they have a good understanding of it and what the appropriate treatment is, so there is some reason to be optimistic.
Very best wishes. Absolutely everything is crossed for you.
Hey thank you so much for your replies I really appreciate it!
Mum is now 5 weeks post transplant and has been back in now for a week now whilst they do all the tests to find the cause of the rising ALT and ALP (ALK phos) what they found so far is narrowing of the hepatic artery which they put a stent in and the levels dropped a little which stopped the hepatic artery stenosis but have now rose again and haven't improved so they have done a MRCP today to look at the bile ducts in more detail? Hopefully by tomorrow they will have an answer as to what is causing the rise. Mums ALT is 350ish and the ALK phos a massive 2000+
The tacrolimus has also been increased from 2.5 to 4.5 and they have even discussed giving intravenous steroids? As this may be high because of slight rejection aswell.
Really hoping we get to the bottom of this as I hate seeing her still in hospital especially when you assume once the new liver is in everything will be fine but hey she's much better than she was so we will be forever thankful for this!
If anyone else has been through anything similar please feel free to reply on this I would really appreciate anything you have to say about your own journey or any knowledge you have.
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