Hi, where do I start. My wife for a long time has had recurrent Lung Infections, Pneumonia, Pleurisy etc.
In 2013 she was unable to work for 6 months due to Pleurisy and that is where this story begins.
Investigations began as to how a young woman (39 at the time) kept getting chest infections. My wife underwent an MRI scan, bronchoscopy where biopsies were taken of her lung and was completed by a Lafarge. All the results came back negative. If she had not recovered she would have been followed up by immunology. How I wish this would have happened and her condition discovered earlier.
My wife had suffered over the years with repeat Chest Infections, Heavy Painful Periods, Cold Sweats, Rashes and a miscarriage.
My wife was admitted to Hospital in September 2016 with Pneumonia, no air was passing on her left lung at all. 4 Days later my wife suffered multiple strokes. A couple of days after that she was whisked off to ITU as she could no longer support her oxygen levels that were now down to 70 percent. My wife was put in an induced coma and ventilated. My wife then either already had by that stage or developed Sepsis. My wife’s organs failed one by one. When the kidneys and liver failed she was put onto dialysis. The medical staff were fighting a losing battle my wife’s toes then developed gangrene. So many drugs to support every aspect of her existence. Drugs for heart rate, drugs for blood pressure the list goes on. The next attempt by the doctors to save my wife was to go through approximately 8 rounds of plasma exchange. My wife also developed a phumnathorax (hole her left lung), yes you guessed it a chest drain was required. During this time my wife had several skin biopsy’s, lumber puncture, bone marrow biopsy, kidney biopsy, liver biopsy and gene sequencing all searching for the holy grail the answer i.e. her under lying condition. All tests were negative. It was only when all tests had been completed over a three-month period (two months in a coma) she was diagnosed with AOSD. My wife was immediately put on Anakinra otherwise known as Kineret which is an IR1 blockade.
The next part of the story can only be described as a miracle. Within 72 hours her rash had gone and her whole body peeled its skin like a snake. Even a life time of hard skin on her heels just lifted off in chunks. It was a long road but my wife was given a tracheotomy and brought around for sedation. Some of the strokes were no longer visible on new MRI scans.
July this year 9 months after the original strokes she took her first Tonic Clonic seizure and is now on AED’s for that also.
We are now a year on September 2017, my wife has had to learn to walk again, talk again and is currently under Rheumatology, Neurology, Neuro Psychology, Immunology, Pleural Team. She receives Speech and Language Therapy at home and also attends Headway.
However, the AOSD is now managed and we are looking forward. Looking forward to xmas this year as a family as we have to small children who nearly lost their Mum last year.
I just wanted to write and let people know how dangerous AOSD can be unmanaged.