anuj srivastava - Amyloidosis

Hello again, I was wondering if you could help me now with a human (as opposed to a cat!).

I ask only now because my mother is stubborn and not open to alternative therapies but now as things are deteriorating I am hoping she will change her mind.

My mother has amyloidosis - abnormal protein cells being produced in high quantities and in her case, "sticking" like glue to her kidneys and slowing down their function. The treatment is chemotherapy.

She first was diagnosed with this in 2013. She spent almost a year in hospital, had huge drops in blood pressure during chemotherapy that sent her to intensive care where they would pump her body full of fluids and burden her kidneys even more. At one point liquid was coming out of her skin.

They told her that her only hope was dialysis but she refused and also refused other treatment (chemo, steroids etc). They sent her to a hospice because they said her kidney function would continue to get worse. She was unable to get out of bed because of the issues with low blood pressure. And her kidney function was very poor.

While she was there, things actually began to improve. He kidney function improved and one day a doctor who had some sense looked at her and said he thought she should try to walk. And she took a few steps. From there, she gained confidence and strength and kidney function got better. Eventually she was doing rehabilitative exercises and was able to go home. She never returned to her healthy prior condition but she was having a good quality of life (could have been better if it were not for her stubborness).

She has had almost 2 years of being in a fairly good condition.

A few months ago she noticed swelling again in her ankles. This was the first sign of her illness the first time. Doctor said the amyloid was attacking her kidneys again. So once again, she underwent chemo therapy - 4 days chemo - 3 weeks off. She has done about 4 rounds of this.

She began after chemo to have a lot of edema that moved from feet to her abdomen.They gaver her diuretics (another burden to the kidneys) but it did very little.

Today she saw a kidney specialist who says her kidneys are functioning at 30% and that her creatinine levels are higher now (not good) than they were when she was at her worst time 2 years ago. I tell her that she needs to go off the chemo and give her kidneys a break and to do things to strengthen her kidneys. But she wants to listen only to her doctors.

You told me all details are important so I will give you some more details about my mother.

She is 75 years old
She does not know how to deal with her emotions
She supresses anger and fear
Episodes of sexual abuse as a child
Clinical depression in her late 30's
Hysterectomy after my birth
Heavy periods as a young women - issues with fibroids
Very demanding - wants things done her way
Gives impression of strength but really a fearful young girl inside
Unhealthy realtionship with my father - imbalance of control - poor communication - much resentment
Back issues from her 30's - sciatica - had surgery
Very sensitive to smells, sounds, chemicals
Claustrophobia, vertigo
Does not know who she is despite presenting the opposite to the world
High pain threshhold


If there is anything else you need to know please let me know - happy yo give any information that may help.

Thank you very much!