Newbie !

[Gemeg]

Hello

New to this site, really glad i was guided towards it.

Is anyone from the UK and have an experience of secondary HLH?

[Sepsur]

No but I have a lymphoma & leukaemia

[Green08]

Hi! I’ve just joined & this is what I had. It’s so hard to find much information about it.

I was initially in hospital for 3 weeks with pneumonia & empyema & had to have a chest drain. I kept getting really high fevers so tried lots of different IV antibiotics. My fever finally settled & I was discharged but a week later I spiked a fever again so had to go back in. My blood pressure became dangerously low so I spent 6 days in ICU for blood pressure support & then 10 days on a medical ward. They’ve diagnosed HLH & are still trying to find an underlying cause but it may well have just been due to the infection.

It’s been such a scary time & I think I’m just starting to process it now & try to understand it. I’m 37 & was previously fit & healthy so came as such a shock.

I hope you’re doing ok now.