getting worried after hospital apt

[loulou]

Hi everyone

I had my hospital apt after liver/upper body scan. I had a scan due to high levels of phosphate in blood test, apparently they have been high for a year, the rhuemy sent me for scan which showed normal, but when i went today he suggested that they need to further investigate and send me to a liver specialist - hinted that they may do a liver biopsy.

the rheumy is concerned that i may have an autoimmune biliary cirrosis, PBC, sent for more blood tests. i am quite worried now, has anyone else going through or been through this. after researching, i am more worried then ever.

If its not the liver, what else can do this?

take care all

loulou

[pudmott]

Loulou

I can imagine you would be a bit worried at this stage. Im sure there are a few people here with PBC that might be able to offer some advice

I think the worst part with all of this is the waiting and not knowing then we reasearch and get all these pictures in our heads and most of them arent good.

Hang in there mate. Hopefully theyu will be able to offer some releif soon


Pud

[loulou]

Hi pud

Thank you for your reply, your right it is worrying when you are waiting. I try to think more positive and take the approach of worry when i need to, but its not easy.

THanks again, take care
loulou

[JJ]

I do understand how hard it is not to worry...here is a funny for ya,

after my daughter called to tell me about the tumor my oldest

daughter gave it some time cause she new Nay was calling to tell me,

then she called to calm me down....she said she figured I would be all

tore up and wanted to calm me...my children are so great...she said

"I'm not just doing this for you, but for Nay, and for myself, cause we

don't need to have to worry about you...lol" The jokes have a way of

taking some of the worry away....harder said than done but don't make

yourself worse by excelerating the stress your already under..Big Hugs!

JJ

[loulou]

Hi jj

Thanks, for the hugs and humour, you have lovely daughters but sorry that your daughter has a tumor, its ridiculious when our youngsters becomes ill. how do you cope with such worry, kinda puts my worry in place a bit.

Thank you

take care
loulou

[JJ]

Loulou,

  I am lucky and unlucky all at the same time....Middle Daughter confirmed SJS and now Tumor,

the oldest daughter has the symptoms but no confermation, the youngest so far no signs of SJS

however she had Meningitis and has had her gallbladder removed before the age of 18

....we support each other by trying to keep our minds off the serious by trying very hard to not

be so serious....my luck is I do have Three daughters who are my very own little support group

the bad luck is that they would have to know and experience what I have for years. I would never

wish this on anyone and as selfish as it is especially my own children. The thing is I worry about all

my SJS family....the prayers work...I know personally because of Nay having her thyroid removed

them finding a second mass and neither were cancerous. Because, T getting a doctor that really listened

and a rock on her hand that not only made her smile but the rest of us as well, because we have

Pooh here keeping us up as well and the fact she got a new crockpot and all the other SJS folks that

care and hope great things for us all. This takes a lot of worry away when your mind is on hearing

the good things from others. Your worry isn't any less significant, so please never think that way..

I just know how toxic worry is to the SJS patient and hope in some little way we all can cut it

back a little. Love and best wishes and Prayers to you,

JJ

[loulou]

jj

Thank you, i pray for the best for you and your girls and the whole of sjogrens family. x

TAke care
loulou

[Patze]

Hi Loulou,

I'll keep my digits crossed for you too my friend, hang in there and hopefully the tests will come back with some answers for you.

Take care -

Patze