Age and sex at dx
Interval from symptoms to dx
How long did it take to type it
Initial symptoms
What bx was diagnostic, how many?
What was your life after the dx
What message would you like to convey to the pathologists
72 M
5 years
Immediate
SOB, fatigue, back pain, weight/strength loss, food tasting bad
Kidney bx
N/A
Had gallbladder removed and told my back pain was arthritis. Why no one was checking?
50s M
Several years
3 months
Edema, blood clots
Kidney bx
Returned to a less active normal life, foot amputated
Nephrologists should be more aware, advise regarding biopsy options
40s F
2 months
Immediate
N/A
Bone marrow, fat, kidney bx
Shock, disbelief, depression
Diagnosis should be explained
60 M
>Year
10 weeks
Heart
N/A
More awareness
50s M
Delay—insurance issues
6 months
Foamy frothy urine, and edema
Kidney (+), bone marrow × 2 (−)
Bedridden/wheelchair for the first 5 months
Early treatment is best, best treatment options at specialized centers
70s M
Years
2 months
SOB, fatigue, weakness, edema
Bone marrow, heart bx
I was told there was no treatment
The pathologist’s analysis of the biopsy was accurate
50s M
3 years
Months
SOB, proteinuria, hypogammaglobulinemia
Kidney biopsy
ASCT, chemotherapy with full response
The pathologist found my amyloidosis on the first try
50s M
1.5 years
Immediate at referral center
Back pain, proteinuria, edema
Kidney, fat pad, bone marrow
Had ASCT
Do Congo red stains more often
50s M
2 months
Patient unsure
Stomach pains, diarrhea, inability to eat or drink
Heart, kidney, adrenals
Did not tolerate chemotherapy well
More awareness
60s M
1 month
2 months
Edema, Irregular heartbeat
Kidney, bone marrow bx
ASCT, chemotherapy × 2
More Congo red stains, routinely on certain organs
50s F
1 month
2 weeks
Slight edema
Kidney and bone marrow bx
Steroids are difficult and feel overwhelmed
My nephrologist knew nothing, the pathologist found it
50s M
1.5 years
Month
Proteinuria, hoarseness, ED, dizzy standing, fatigue, weight loss, PN
Kidney and bone marrow bx
Trying to cope
If someone has multiple organ or system complaints, do a Congo red stain!
50s F
10 months
Immediately
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