Hello all, I’m Chris from Brisbane. (But really, I’m an old Kiwi, living in Brisbane since 86). I actually I came to Australia first in 1967. I am now 74 years young.
My confirmed diagnosis with AL amyloidosis was in December 2021.
In 2018 I was confirmed first with MGUS then Multiple Myeloma. My GP was highlighting my abnormal light chains for all that time to my ‘specialist’ both haematologists, and my two cardiologists. None bothered to organise a bone marrow biopsy. I was told by the haematologist at that time it would be a waste of time as they would not show anything.
How wrong that advice turn out to be!
My GP referred me to a Kidney Specialist who basically forced the Haematologist at that time to do both another bone marrow and a kidney biopsy which confirmed what we had already suspected Amyloid.
Fortunately, I then got a referral from my GP to see Dr Peter Mollee the medical director of the Queensland Amyloidosis Centre based at PA Hospital in Brisbane where I’m currently being treated by their brilliant doctors and nurses.
I have Kidney, Heart, GI tract, Bladder and Nerve involvement causing neuropathy across my face in both hands and both legs and feet. I have had minimal or no voice since November 2022 with amyloid in the vocal cords and muscle nerve damage in the throat.
I have had 6 cycles of chemo over 9 months, catching COVID in the middle (unfortunately, that turned into long COVID).
I am on the Cael-101 Trial in the Research Clinic in the PA Hospital; it is the only treatment I’m that I’m currently on.
I’ve just commenced learning Auslan signing just in case my ability to speak deteriorates.