My mother was diagnosed with SLE a few days before she passed away (a month of tests and one week in ICU). The doctor even allowed her to go home "for the weekend" despite her poor condition and told us she would live well for 20 to 25 years given she takes cortisoid medicines and follow treatment.
The doctor also made her do bone marrow tests to detect other diseases. Her blood condition was very bad (very low white cells and platelets), a high positive ANA result and so on. She had a small lung infection which was later said to be the cause of her death. She had been treated with 2 types of anti oxidant. Seeing this board, I realise people can live with lupus while having flares etc.
Since the hospital allowed her to go home for the weekend and since she took all her medications, how could she have died in her sleep, while being fine an hour before ? anyone can help me answer these questions. I lost my mother 3 weeks ago and have no answers as to why she died. I blame myself for not having paid more attention to her complaints about joint pains and pale hands (which everyone assumed was due to Chikungunya).
My condolences on the loss of your mother . It is hard to say what could have caused her death with so many medical things going on at the time. Did your family request an autopsy?
Please do not blame yourself, Lupus is sometimes called "The Great Pretender" because the symptoms can be similar to somany other illnesses and, sometimes, resemble just plain old fatigue. It is very hard to diagnose, even for Drs. who see several people with the disease throughout a career. How could you, when you aren't a Dr., and have not seen any other Lupus cases, possibly be expected to know that is what your mom had? The answer is : There is no way you could have known.
What is Chikungunya?
I'm so sorry about your mother. How did it happen? I don't know. I really feel for you and all your unanswered questions. I would react just like you. I would want answers and feel robbed that so many live long lives with Lupus while your mother didn't. I would also question myself, what could I have done to prevent this. The answer is nothing. Some people believe that when it's your time, it's your time and there is nothing you can do about it. You could do an autopsy, you could blame the doctors, and if this puts your mind at ease do it. Your mom is gone, the last thing she would have wanted is for you to blame yourself. I hope you don't mind but I will pray for you to be comforted in your time of grief and for peace of mind. Take care of yourself and I hope you find the answers you seek.
Chikungunya is a viral disease that created an epidemic last year in the Indian ocean. My mother thought she had it since September, as most people in Mauritius had contracted it. It is carried by mosquitoes, has no cures and IS NOT lethal in healthy adults. It shares several symptoms with lupus, if not most (severe joint pains, mouth sores etc). It can go on for a whole year.
That's what I suppose triggered the lupus too (viral fever).
I believed her when she said it was only Chikungunya, until a few days before she passed away, when the doctor confirmed the lupus diagnosis.
How incredibly unfair that all these coincidences should lead to such a tragic outcome. At midnight, an hour before she died, I was in my room checking the symptoms of Chikungunya versus those of Lupus, holding on to the hope that it might be the former....and was looking through the ANA tests once more (a first negative one and a second positive one) to show to the lab guy (coming to our house to take her blood samples) for more tests the next day. She was only 44 and was taken so suddenly.
I did not want to post such a sad news on the Lupus board, but I read enough about Lupus to know now that it is difficult to diagnose, but that it can be treated when diagnosed early. That was not my mothers' case: there is not enough information to educate people about this disease, in my country and elsewhere. I told my cousins and aunts about it in the hope that they can see the signs well before it gets serious.
Here are the more detailed information that I got on the internet: