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Diagnosed with AL Amyloidosis. What can I expect?
Blood Cancers & Disorders | Last Active: Mar 28 1:00pm | Replies (44)Comment receiving replies
@bob100,
Thanks for sharing what you have learned through your own research. You are correct in advocating for patients to educate ourselves about our conditions. And searching the internet can be a wonderful source of information - as long as we go to reputable and respected sources, and are aware of outdated information.
I also encourage patients to take a loved one or a responsible individual withi them to appointments as an extra set of ears, and an additional voice.
Does xwife continue on dialysis? Does the AL diagnosis require any extra dialysis concerns/complications?
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Thank you! Sherry was forgotten by the vascular doctor and as a result will not have the graft put in until the 27th of this month. It will take an additional 2 weeks to heal before they can use. Her kidney function is around 10% now and we have an appointment with her kidney doctor this Wednesday to find out what too do. It’s my understanding 10% is the bottom and dialysis is required. There are so many doctors involved with this disease that it’s hard to stay on top of them.