I visited Bev in hospital yesterday. She has been in hospital for a month now! Things have been touch-and-go. They have carried out all sorts of tests including the kidney biopsy and blood transfusion. She has had a terrible time and has struggled to cope.
While I was there Bev was moved to a new wing of the hospital into the rehab section where she needs to get her body back together and learn to walk again. She will be there for another 3 weeks!
We will be documenting this whole episode when she gets home but initially she said that one of the main insights is that - Sjogren's sufferers need to work with a specialist - NOT a GP. You need to find an Immunologist. While she thought she had good GP's over the last 15 years they have no real idea of how to deal with Sjogren's.
The specialist who has taken over her case (and who is actually taking a day off next week to devote to her case files!) said that if she had not found him she would have been dead within six months. All her organs had gone into shut down.
I'm not absolutely sure of the details but one of the treatments was to put her on a cytotoxic drip (same as chemo!) to shut down her immune system which was attacking her kidneys. This sounds counterintuitive because Sjogren's is partly about not having a functioning immune system.
But apparently she is stable now and hopefully the rehab will bring her back to being functional again. More details later when she gets home. Needless to say all personal assistance from her through TASSA has been suspended for now.
Somehow she continues to smile. These pix are her in the lift on the way to the rehab wing and the other is Bev in the new room - apprehensive but ready for rehabilitation.
Jay.
Update:
Bev finally came home from hospital on the 22nd of June after nearly 3 months. She is still very weak and continuing her rehab at the hospital. As she improves we will be documenting the whole process and put together and share a detailed information sheet with a fresh approach to conventional medicine.
Bev is still going back to hospital 3 times a week for physio/rehab and plus chemo every 2 weeks plus a few local doctor appointments each week. She can only just walk and feels like crap and has to take 14 pills each morning. Her balance is so off Bev can only walk on flat surfaces.
TASSA member consultations are still suspended until further notice.
