What a journey your husband has been through — and what a thoughtful advocate you are for him. These are really important questions.
Regarding definitive testing for protein in the urine, the gold standard is a 24-hour urine collection test. This measures exactly how much protein is being lost through the kidneys over a full Show Full Answer
What a journey your husband has been through — and what a thoughtful advocate you are for him. These are really important questions.
Regarding definitive testing for protein in the urine, the gold standard is a 24-hour urine collection test. This measures exactly how much protein is being lost through the kidneys over a full day, giving the clearest picture of kidney involvement.
For confirming renal amyloidosis specifically, a kidney biopsy is typically the most definitive step — it allows doctors to look directly for amyloid deposits in kidney tissue under a microscope. However, as his nephrologist noted, the decision to biopsy also depends on whether the results would change the treatment plan. Regarding treatment for kidney involvement in amyloidosis, options can include:
- Medications to help support kidney function
- Reducing fluid intake as advised by his doctor
- Eating less salt, cholesterol, and saturated fats
- Regular monitoring of urine protein levels to track any progression
One MyAmyloidosisTeam member shared: *"I'm doing fine, meds are working, shortness of breath has abated, the swelling has gone down, blood pressure is within limits and my energy level is back up."* — showing that symptom management can make a real difference in quality of life. Given his age, his confirmed ATTR diagnosis, and the fact that he's being seen only every two years in the study, it may be worth asking his care team about more frequent monitoring — especially for his kidneys and heart, which are the organs most commonly affected in ATTR amyloidosis.
It would also be worth asking specifically whether any currently available ATTR-targeted treatments might be appropriate for him, as treatment options in this area have been evolving. His study team at Tampa General would be the best people to guide that conversation.
Staying proactive with regular urine protein testing and cardiology check-ins in the meantime is a reasonable and important step.
October 15
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