AOSD - Read what it did to my wife

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.

9 Replies
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I'm not sure what AIDD is, please forgive my ignorance.

However, I just wanted to acknowledge the hell your wife, all of you have been through; terrifying, and to wish you all the very very best going forward.

Marie

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Adult onset still's disease?

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That's a scary disease. So sorry of the emotional pain you and your kids went through last year.

Glad your wife & young family can have a wonderful future together.

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I don't know what AOSD is and will research it after this response, but I wanted to acknowledge your struggle immediately!

I am thankful that your wife is coming back to you and your children. Even though the road has been long and bumpy, you continue on the journey together! Many prayers and blessings are coming your way! Hug your wife, gently, for me! Thank you for sharing your experience, you will find a lot of emotional support here!

Mandy

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Thank you for your kind words. Dr's called me in three times to ITU to say goodbye, how wrong they were and how strong my wife is.

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My your wife travelled a rough road. Thank goodness she's turned a corner & still there to be a wife & mother. It does seem she presented quite unusually, differently to others with AOSD I've heard about, this is just one nras.org.uk/my-experience-w... We do have regular member I know of who has had AOSD a long time, maybe she'll be along if she sees your post.

I'm sure you'll make it the best Christmas ever for you both & your young family, you deserve it.

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So sorry you had to go through this, but very thankful your wife is on the road to recovery. Lots of hugs and positive thoughts coming your way. xo

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WOW what a journey you and your darling wife has been on. I know she is the one suffering,but you have suffered with her. I am glad she is on her way back to relatively normal health(whatever normal health is these days) I have a chest infection and this is at least two this year than i can remember so it is of particular interest to me. Give your wife my love for to get brighter and big hugs to you both and your children.xxxxx

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Prayers!

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