LUPUS UK
21,654 members17,165 posts

Finally Home in my comfort zone

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

8 Replies
oldestnewest

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

1 like
Reply

Penguintaz thank you for your lovely message. Hugs 💖

1 like
Reply

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

3 likes
Reply

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

1 like
Reply

Thanks

Reply

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

1 like
Reply

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

1 like
Reply

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

Reply

You may also like...