First Post from a "Noob"

[Kristian]

Hi,

Welcome to my little corner of this forum. My name is Kristian and I live in Eccles, Manchester. I underwent a Liver Transplant at the Queen Elizabeth Hospital Birmingham (QEHB) in April 2017. I'm new here but not new to liver disease. Been there and got the t-shirt, lol.

Over the years I've been described as a medical mystery, diagnostic dilemma and just plain and simple "strange". Although the latter not by anyone in the medical profession, :-).

I've had abnormal LFTs since 2007, Liver Fibrosis diagnosed in 2010, liver cirrhosis in 2013 and eventually a Liver Transplant in April 2017. Initially diagnosed as cryptogenic cirrhosis in 2013 as cause was unclear but following transplant cause confirmed as suggestive of Primary Schlerosing Cholangitis (PSC).

Dealt with those lovely things like fatigue, eodema (yes, I too have looked like the "Mr. Stay Puffed Marshmellow Man"), ascites (fortunately rather mild), sickness, sepsis, acute kidney injury / renal failure, portal hypertension, varices, spontaneous bacterial peritonitis (SBP) and of course liver transplant.

Happy to share my experiences and also learn from others.

My advice to anyone with Liver disease - stay positive. When it comes to the crunch, its amazing how beneficial that is.

[jojokarak]

No way are you in Eccles haha snap !! I can't believe I just asked where you had your transplant lol I didn't have at queen's but I know a few people in Manchester who did that's freaky lol

[Kristian in reply to jojokarak]

Freeky indeed. I must admit I was a bit surprised when they said I'd be referred to Birmingham. I thought they sent everyone from Salford to Leeds. I'm not fully sure of the reasons. But, I must admit the QEHB Hilton does have a lot going for it, although clinic trips can be a bit of a trek.

Did you mention you were involved in the Leeds liver support group?

[jojokarak in reply to Kristian]

I am yes. And I was under MRI and lived in northenden when I first got referred to Leeds the consultant I seen when I moved to Eccles was gutted I hadn't been sent to Birmingham lol ... Are you on Facebook?

[Kristian in reply to jojokarak]

I am on facebook yes. Do a search for Kristian Marsh and I should appear. (Hope that passes the mods, lol).

[Millie09]

wow , what a journey ! glad to hear all is going well . i live in birmingham and under QEHB dr f thompson . have my 4th visit on 7 November so far this year

had ALD since 2008 .was up and down through the years with a relapse in 2012 due to my dad passing away to secondary cancer .

deterioration since nov last year . bad insomnia but so very tired . high fibroscan resulrs .HE , itching etc .. memory loss , no ascites since 2014 . .i have osteopenia in my hip so mobiity is restricyed .. great to read a positive journey .keep going 😊

[Kristian in reply to Millie09]

Thank you, hope you have a bit of an upturn too.

[Millie09 in reply to Kristian]

Thank you ! 😊.

[Faithfull]

Kristian!

I cried when when I read your first post , I'm so great full to you as that reply will always be the one I will look at,

Truth is I feel like a nobody except to the ongoing illnesses that even neuroligist was more worried about me micronodula cirrhosis

I feel ill sicking up blood swollen belly (99months pregnant )at my age with no womb . I had another ct scan and I was so confused that I was not being told nothing GP did not have results .

Got intouch with liver dr 3days later she phoned up daughter said I was asleep and the dr said scan shows no cirrhosis me daughter Woke me then I could not get hold dr I'm so confused why I got the cirrhosis diagnosis as I thought for over a year I was on me way out .

Please god don't let me daughter got it wrong and why would letter from neuro put all he did in letter that I had to have thiamine and strong vitamin b .

It's so hard to get the hospital dr to call I feel why is this happening I got so many other health this is torcher to be in the not knowing 100% from the dr I'm in bad place and you making me laugh I thank you for and am so happy you are ok thanks

.

[Tradscot]

Thanks for the welcome. I developed ascites a year after my transplant.

It's not much fun. Had my abdomen drained 6 times about 30 Litres of

fluid in total. Couldn't eat with all the pressure on my guts and went

down to 42kg. Ended up with a gastric tube to keep me going. It

cleared after I got rid of the Hep C. I was on Omeprazole and some

other ....zole medication to get rid of the fluid. Didn't work but it did cause

some breast growth. Baggy T Shirts from now on I'm afraid.

[Kristian in reply to Tradscot]

Blimey, ascites after transplant, that wasn't in the sales brochure, lol. Glad its ok now though.

The diuretic was probably spironolactone. That can have the breast growth effect. I believe its a bit of an anti androdgynone in addition to having its diuretic properties, so can affect the male hormone production allowing the eostrogen to get a bit too much influence. Its a bit of a double whammy if your liver also isn't working right and removing the eostrogen effectively too.

[Faithfull in reply to Kristian]

Thought you was going goa or was that to stop me butting in posts .

Or was it someone else innsomnia ADHD PTST ill health shaken up a cocktale of insanity better copy right that one .

[Kristian in reply to Faithfull]

Wasn't me, lol. Must've been someone else.

[Faithfull in reply to Kristian]

Sorry about that it's the innsomnia I probably was on another site ,you do make me laugh in me hour of self pity well crying ,

when u said to someone acites that weren't in the brochure .

See how uninformed we all are .or is it me with the no understanding what the ........

Diagnosis is well that's enough of me .hope your well best wishes .

[vulnerable]

Really informative Kristian & succinct. Good to hear you are well and positive. Great to be out the other side. Wishing you continued good health

[Shaunwood]

Thanks for reply nice to hear from u hope u r keeping well I'm a lot older than u but seems like we had the same problem, i had pbc,had it 4 a long time was getting worse and so ended having transplant, I havnt had many problems but last wk my stomach has started 2 hurt & I can't explain how it is feels like something is growing inside me can't c consultant as covid is stopping me, he does phone but I can't explain as don't no wat 2 say anyway ill keep plodding on u take Care & keep in tough pat

[Laura009 in reply to Shaunwood]

Hi Saunwood. Are you aware you are replying to a 3 year old post? Are you having problems replying to someone in particular?

[Shaunwood in reply to Laura009]

I'm new to this site don't really know anyone or how this works i just answered his text as he answered me I was in QE May 13th 2018 just wanted to no if anyone had a liver transplant at that time

[Laura009]

Ah bless you. Yes tricky to find your way sometimes. Congratulations on your transplant. If you have any worries about your ongoing health you will probably get the best answers from your consultant as he knows you and your circumstances best.

Best wishes

Laura x