I wish I wasn't here but I am and am probably going to be needing your support. My son has just been discharged from a horrible week in hospital starting on his 18th. He has been diagnosed with SLE after being ill for 2 weeks (swollen joints, coughing, fainting, bursitis, effusions....)Weird to think he was in a bike race 3 weeks ago. He is an athlete and trains for British Cycling foundation programme.
Anyway he had kidney biopsy on Friday and get results Tues then start treatment. On steroids just now. Haemoglobin is 70 with transfusion cut off being 60 but they don't like to "transfuse young people with chronic kidney disease" cos it reduces their chances of finding a suitable donor for transplant in the future. All scary stuff.
It is rare I see to be a young male with SLE.
So at the moment all we want are positive stories. Can't cope with thoughts of a terrible future. He is so positive and always has been. Noone should take that hope away.
He is bothered most at the moment with a horrible cough, weight loss (gone from 56kgs to 52 in two weeks), and obviously intense fatigue.
This is a hideous disease and as a nurse (althiugh mainly Paediatric) I didn't realise how severe it could get.
Thankyou in advance for being there. We live in the north of Scotland x