TESTING FOR BUDD- CHIARI SYNDROME - British Liver Trust

British Liver Trust
18,521 members9,722 posts

TESTING FOR BUDD- CHIARI SYNDROME

Worriedmamabear
Worriedmamabear
10 Replies

hello - well we are 1 step forward and 2 back, my son as you know was quite ill for a long time and has had various tests done... at one point they thought cancer / leukemia as his infection levels were through the roof and he had lumber puncture etc,

We received a letter yesterday saying that as we are aware that is not cirrhosis and they think it could be Nodular Hyperplasia of the liver ( we were told this at his appointment in February but they wanted to do some more tests.

Now after a further review they they want to test for this Budd Chiari syndrome - ?

good news is the increased medication has resulted in no ascites symptoms for almost 3 weeks and he is starting to look more like himself.......

bad news is we still dont know, i know we are getting closer but this has been a full 15 months of him being unwell and at least 4 hospital admissions...

what can he / we expect we are really keen to control symptoms and get him back to work - he is a electrician .......

i just want him to be back to my son of 2016 fulltime job football 3 - 4 nights a week

its the simple things.....

he wont even google this syndrome as everything else he has googled has not be pleasant reading!

sorry for rambling

10 Replies
oldestnewest
Trust1
Trust1Administrator

Hi,

We have a publication on Budd Chiari syndrome that may be useful for your son and yourself to read.

britishlivertrust.org.uk/wp...

With regards to controlling symptoms, we would suggest your son discusses that with his medical team,

Warm wishes

Trust1

2 likes
Reply
Worriedmamabear

Thank you very much - i have downloaded the publication - have a nice day

3 likes
Reply
Trust1
Trust1Administrator
in reply to Worriedmamabear

You too :)

2 likes
Reply
Faithfull

You ain't rambling on don't wrorry I'm the worste but we all need help and I ain't got answers on me own liver well it's cirrhosis then 5 times I've been told is it ain't i know it so hard with you kids no matter what age me daughters ill as well so it's hard but there's loads on here so supportive x

1 like
Reply
Worriedmamabear

thank you :)

1 like
Reply
Faithfull

I get so state I reply to me self on here and out loud in public

Reply
Hidden
Hidden

Hi

Just to let you know I'm thinking of you both. It is hard when your children are ill, my son had Crohn's disease and it's awful when he has a flare up. Fingers crossed, he's ok at the moment, final few months at uni!! Take care. Love and hugs Lynne xxxx

2 likes
Reply
Worriedmamabear
Worriedmamabear
in reply to Hidden

thank you :)

2 likes
Reply
Hidden
Hidden

You are very welcome xxxx

1 like
Reply
Jillymo

Worry about a loved one in your case a beloved son you entitled to ramble. I hope you get some answer's soon 15 months is a long time of wondering and worrying. I also suffer with ascites symptoms and shall be seen at the liver department next month.......I look like a telly tubby at present.

It's hard to find words of comfort at times like this......big hugs.

Reply

You may also like...