Hi everyone - I'm new here this evening and am desperate for help... Am quickly losing faith in my mums medical team and am not sure where to turn!
My mum was diagnosed with systemic sclerosis in 2006. Unfortunately, due to a lack of blood tests (by her consultants own admittance!) she went into chronic renal failure in 2007. She had a live kidney transplant in 2008 which failed within six weeks and she has been on dialysis ever since. She has terrible problems with calcinosis and has very limited use of her hands and lots of painful open sores. It's starting to affect her legs now to and X-rays have shown the presence of calcium build up in some of her organs.
We were told that there is usually only one 'crisis' with scleroderma and that only one organ is usually affected (in this case her kidneys) however, last weekend she was rushed into hospital and ended up having emergency surgery to remove part of her bowel! The pathologist has advised that it was the scleroderma which caused a blockage resulting in a perforation.
Understandably my mum is becoming more and more depressed with the situation and I feel like all her doctors have run out of ideas on what to do next and that they are giving up on her! I really don't know what to do now!
Sorry for the long post... Thank you in advance for any advice!