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
Written by
Hopingformumxx
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So sorry to hear of this. I cannot help you but advise you to contact the Pbc Foundation as this will give you accurate info. Take heart, this may be just a blip in mums recovery. Wishing you both well. Let us know how she gets on. ☺
Reperfusion issues in first week (new liver a tad damaged from being out of body for 10 hours) and my ALP was at 2000 + at one point!
now 10 months on, 3 stents and tacrolimus adjustmentS my ALP is at about 390 I think it is.... feeling well.
"every liver transplantee has their own journey to make, each one is different, comparing to others is not a very valuable tool for understanding your position" they keep on saying to me, but it is only human to ask what others experience!
hope you mum gets better, I am 6 weeks post transplant I also had early rejection and high temperature I was discharged 3-4 weeks ago, I went to my second post clinic and doctor asked how I was, told him that had not been well & had bruises appear, the doctor admitted where I spent another 10 days in hospital, it appears since my liver transplant my platelets & red & white blood cells are low, had blood & platelets transfusions, hospital have sent blood away for tests if these show up nothing then will be admitted to have a biopsy of my bone marrow, docs say that my new liver is fine xx
Great to hear from you Marden post your transplant and really hope all goes well for you from now on......Hopefully this latest episode was a glitch and you are able to rest and recover....Were you able to finish working prior to your transplant or is return to part time a goal for the future ?
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 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 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+ just like you Charlie! Where did they put the stents in the bile ducts? And how did they do it? Did they do a biopsy on you? Did your bilirubin rise at all?
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!
Marden I really hope everything will be fine and this is just the post transplant hiccups we hear so much about on here, sending lots of best wishes your way and thanks for sharing your story with me
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.
Hi Jade, My name is Ian, I am post transplant sine March this year, I too was very poorly and had NASH, even went into a coma, since my op I have had niggling problems, one being a abcess attached to my Liver the size of a orange, I was admitted to have it drained but it was what they say a collection which contained congealed blood so nothing came out of it , it has reduced but still there. Just been to the Liver clinic this week and have been told I have what is called a stricture in my bile duct which is a narrowing and with that it causes a mass of small stones which are like sludge, so I have been told I have to have a stent put in the structure, my alt and alp were raised too so I wondered if there is a connection, I think my problem is a result of the operation where my bile duct might of been damaged during the operation when they removed my Gall bladder as I have read that this generally happens, I hope it is just a hiccup for your Mum and I'm sure they will rectify it.
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