Finally Home in my comfort zone : Hello everyone... - LUPUS UK

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Finally Home in my comfort zone

LauraMk30 profile image
8 Replies

Hello everyone. Hope you are all ok x

Nice to be back in my own bed,

So Some of my family came to visit me when I got home on Friday which was nice but draining, they had forgotten to mention they had been suffering with a really bad cold virus!! That spreads like wildfire, they laughed & said I would be fine But due to my current state my immune system is already depleted, it didn't take me long to catch it & now i have laryngitis, its painful & feels like I've swallowed glass, & now a crackling chesty cough nothing is ever simple!

So my pancreatitis- ultrasound clear for gallstones (good)

I managed to see my Gastroenterologist specialist & he's ordered urgent invasive bloods, & a PET scan. He was concerned with my weight loss, & had mentioned a few deficiencies including exocrine pancreatic insufficiency & Copper deficiency- urgent investigation- I'm only eating a few spoonfuls of soup a day. I can't tolerate anything. I have Steatorrhea & even though I'm only consuming liquid he's alarmed I'm going to the toilet 5 times or more & I showed him some pictures that I tried to show my GP & he was shocked!

My Gastroscopy stomach Biopsy was clear & negative for H.Pylori.

It's the pancreas alone.

The blood & stool tests are as follows

Stool: Chemical Pathology

Faecal calprotectin

Faecal Elastase

Bloods

carcinoembryonic antigen (CEA) and CA 19-9 & Serum CA 19-9

A BUN Test

LFTS

Amylase & Lipase

CRP

FBC

Iron & Copper

Immunoglobulins

My specialist showed such empathy, he said as much as he would of liked to of got the tests done ASAP I couldn't afford it privately. So he's put a urgent rush for all of these tests within a week in a bit. Which I thought was wonderful.

He explained to me & my partner that I could have something RARE, a disease that no one has heard of. He really does want to help me. & we both could see & feel how caring he was. So all in all. I've lost 2 stone, my hair is falling out so I've been wearing a cap to bed to try and stop it, my lips are constantly dry & my itching has become unbearable. It's shocking to see myself in the mirror as I've never been this thin. But I thought I would keep you all posted. Your all in my heart x

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LauraMk30 profile image
LauraMk30
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8 Replies
Penguintaz profile image
Penguintaz

Oh dear, I hope that they are able to figure things out and that you'll be okay

LauraMk30 profile image
LauraMk30 in reply toPenguintaz

Penguintaz thank you for your lovely message. Hugs 💖

Ianrussell69 profile image
Ianrussell69

Hope you are feeling better soon I've just come out of hospital myself and my wife will not let anyone in the house with a runny nose or cold ha ha I'll have no friends left at this rate

LauraMk30 profile image
LauraMk30 in reply toIanrussell69

Hi Ianrussell69, glad to hear your out of hospital, & I don't blame your wife. I should have a black cross on my door, "stay the hell a way" I have NO human friends I'm so glad I have some lovely real cyber ones though :) get well soon

Ianrussell69 profile image
Ianrussell69 in reply toLauraMk30

Thanks

ludo profile image
ludo

Glad your home Laura and hope you get your blood tests etc done soon. Can't believe you have to wait! You've been through such a lot already.

Thinking off you x

Wendy39 profile image
Wendy39

Lovely to hear that you are home. I hope all these tests are competed quickly and that your kind doctor can give you some much needed answers, before you move forward. You take care! And no more visitors with germs! Best wishes. x

I need to stop complaining about my hands and feet. You’ve had a time of it. Hoping your symptoms calm down

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