Daily, Weekly, and Monthly Tracking: A Guide for Amyloidosis Patients

Living with amyloidosis requires more than just attending medical appointments. It demands clarity, awareness, and consistent tracking. Since amyloidosis can affect multiple organs, including the heart, kidneys, nerves, liver, and GI system, even small changes can indicate disease progression, treatment response, or complications.

This is why a structured daily, weekly, and monthly tracking system is one of the most useful tools a patient can have. It helps you communicate better with your doctors, spot early warning signs, understand your body, and make informed choices.

This guide is designed to help you create a simple but effective routine to monitor symptoms, lab results, medications, and lifestyle factors. It is written in a patient-friendly way and is fully relevant for AL, ATTR, AA, and hereditary amyloidosis.

Why Tracking Matters for Amyloidosis Patients

Tracking is more than documentation; it is about protecting yourself. Amyloidosis may progress without obvious signs, so consistent monitoring helps you:

Detect early red flags
Understand patterns and triggers
Track treatment response
Provide accurate information to your doctor
Improve overall quality of life
Reduce emergency situations
Minimize confusion during hospital visits
Prevent relapse or complications

Doctors depend on what patients report. Keeping a well-maintained journal makes you an empowered, informed partner in your treatment.

What to Track Daily, Weekly, and Monthly

Monitoring for amyloidosis involves four main categories:

Symptoms
Vitals and measurements
Lifestyle factors
Medical tests and follow-ups

To simplify this process, this guide breaks down what to track each day, week, and month.

DAILY TRACKING FOR AMYLOIDOSIS PATIENTS

Daily monitoring is the most essential part of your journal. Many symptoms of amyloidosis can change from day to day, and these small patterns help doctors assess the disease progression.

Daily Symptom Checklist

Every morning and night, note whether symptoms are present. Key symptoms to monitor include:

Cardiac symptoms

Shortness of breath
Palpitations
Chest pressure
Difficulty lying flat
Sudden rapid heartbeat
Swelling in legs or feet

Kidney symptoms

Foamy urine
Changes in urine color
Frequency of urination
Swelling around the eyes

GI symptoms

Constipation
Diarrhea
Feeling full too quickly
Nausea or vomiting
Weight fluctuations
Difficulty eating

Nervous system symptoms

Numbness
Tingling
Burning sensation
Weakness in hands or legs
Balance issues
Dizziness when standing

General symptoms

Fatigue
Fever/chills
Changes in appetite
Sleep quality
Pain (location and intensity)

Daily Vitals and Measurements

Record these daily:

Blood pressure
Heart rate
Weight
Blood sugar (if diabetic or on steroids)
Oxygen saturation (if there is cardiac involvement)

Even a 0.5–1 kg overnight weight gain can indicate fluid retention, especially in cardiac or renal amyloidosis.

Daily Medication Tracking

Create a checklist for:

Did you take your dose?
Any missed doses?
New side effects noticed?
Any concerns about medication interactions?

This is especially important for:

TTR stabilizers
TTR silencers
Chemotherapy
Anti-arrhythmic drugs
Diuretics
Steroids
Anticoagulants

Daily Nutrition and Hydration Log

Since amyloidosis affects multiple organs, pay attention to your diet.

Track:

Quality of appetite
Water intake
High-salt meals
Digestive reactions
Alcohol or caffeine intake

Sleep and Energy Tracking

Sleep quality can impact symptoms like weakness, mood, blood pressure, and cardiac stability.

Record:

Hours slept
Sleep interruptions
Morning energy level
Afternoon fatigue patterns

Mental Health & Mood

Amyloidosis can feel overwhelming.

Track brief notes on:

Stress level
Mood
Anxiety episodes
Anything that feels emotionally heavy

This helps caregivers and doctors support you better.

WEEKLY TRACKING FOR AMYLOIDOSIS PATIENTS

Weekly tracking allows you to identify patterns that may not be obvious daily. Each week, set aside 15 minutes to update the following sections.

Weekly Symptom Summary

Write a short summary addressing:

Which symptoms worsened?
Which improved?
Did fatigue increase?
Did neuropathy spread?
Any new swelling or changes in breathing?
Did GI symptoms impact your nutrition?

This helps your doctor understand trends.

Weight, BP, and Heart Pattern Summary

Review your daily numbers and note:

Any upward trend in blood pressure
Increased episodes of rapid heart rate
Unusual weight gain or loss

If you notice consistent patterns, it may suggest:

Fluid retention
Side effects of medication
Issues with treatment response

Medication Review

Every weekend, check for:

Any missed doses?
Any side effects this week?
Did any new medications start?
Is there any confusion about dosing?

This helps prevent medication mistakes, especially for older patients.

Activity and Mobility Assessment

Track:

Walking ability
Exercise tolerance
Fatigue after activity
Balance issues
Need for support while walking

Neuropathy and cardiac amyloidosis can gradually worsen. Weekly tracking can catch this early.

Diet Review

Ask yourself:

Did you feel full quickly?
Was your appetite steady?
Did any foods trigger GI issues?
Did constipation or diarrhea affect hydration?

This is useful for adjusting meal plans.

Emotional Health Reflection

Write a brief note:

What caused you stress this week?
What helped you feel better?
Did you feel supported?
Any episodes of fear or anxiety?

This enhances treatment adherence and coping.

Early Red Flags to Check Weekly

Every week, review if you experienced:

New swelling
Increased shortness of breath
New tingling or weakness
Trouble climbing stairs
Sudden weight gain
Fainting or dizziness
Difficulty eating

If so, mark it and communicate with your doctor.

MONTHLY TRACKING FOR AMYLOIDOSIS PATIENTS

Monthly tracking includes deeper assessments, medical tests, and treatment-related reviews.

Monthly Medical Tests to Consider

Depending on your type of amyloidosis, doctors may schedule the following tests every month:

For AL Amyloidosis:

Serum free light chain ratio
NT-proBNP
Creatinine & GFR
Liver function
24-hour urine protein (if advised)

For ATTR Amyloidosis:

Cardiac biomarkers
Liver tests (especially when on TTR silencers)
Neuropathy scoring
Weight trends
ECG / ECHO as scheduled

For AA Amyloidosis:

CRP
SAA protein levels
Kidney tests
Inflammation markers

Record your test dates and results in your journal.

Monthly Doctor Visit Preparation

Before your appointment:

Summarize daily and weekly trends
Note any new symptoms
List questions for your doctor
Bring your medication list
Report any red flags
Note any emotional or mental health concerns

Your monthly journal summary will save time and improve care quality.

Monthly Organ Function Review

Each month, write a brief summary focusing on each organ:

Heart:

Changes in shortness of breath
Fluid retention
Palpitations
Blood pressure stability

Kidneys:

Changes in urine
Swelling
Trends in creatinine/eGFR

Nerves:

New numbness
Balance issues
Grip strength

Liver:

Changes in appetite
Weight loss
Changes in lab results

GI system:

Changes in appetite
Reflux
Bowel patterns

Monthly Lifestyle Review

Assess:

Quality of diet
Level of physical activity
Consistency of sleep
Sources of stress
Emotional balance
Family or caregiver support

This helps you adjust your routine for better control.

Monthly Emergency Red Flag Review

Ask yourself:

Did I feel close to fainting?
Did I experience sudden swelling?
Did chest pressure or breathlessness increase?
Did neuropathy worsen suddenly?
Did my digestion or appetite drop sharply?
Did my mood decline?

If so, document it and report it immediately to your doctor.

CREATING YOUR PERSONAL TRACKING SYSTEM

Every patient has different needs. Here are simple ways to personalize your journal.

Choose Your Format

Options include:

Notebook
Printed sheets
Excel or Google Sheets
Mobile notes app
Digital health tracking apps

Select the format you will consistently use.

Make Four Fixed Sections

Divide your journal into:

Daily Log
Weekly Review
Monthly Summary
Emergency Red Flags

This keeps your journal clear and organized.

Use Color Coding (Optional)

Red for urgent changes
Yellow for mild changes
Green for stable

This makes it easier for doctors to read your journal.

Keep Copies of All Medical Reports

Create a file or folder for:

Blood tests
Imaging reports
ECG/ECHO reports
Neuropathy assessments
Medication lists

Your journal and reports provide complete clarity for your doctor.

RED FLAGS YOU MUST TRACK AT ALL TIMES

Some symptoms should never be ignored, regardless of your tracking schedule.

Immediate Emergency Red Flags

Seek urgent help if you experience:

Sudden difficulty breathing
Chest pain or pressure
New severe swelling
Fainting
Rapid weight gain in 24–48 hours
Severe vomiting or abdominal pain
New inability to walk
Sudden leg weakness
Irregular heartbeats
Extreme fatigue that prevents daily activity

These may indicate cardiac failure, renal crisis, complications from neuropathy, infection, or treatment toxicity.

When to Call Your Doctor Within 24 Hours

New numbness or tingling
Worsening GI symptoms
Increased swelling
New palpitations
Poor appetite lasting over two days
Unusual bleeding or bruising
Fever
Persistent dizziness

What Caregivers Should Watch For

Caregivers should observe for:

Confusion
Slowed speech
Sudden mood changes
Difficulty eating
Unexpected falls
Restlessness during sleep
Missed medications

HOW TRACKING IMPROVES DOCTOR DECISIONS

Your journal assists doctors in:

Adjusting medication doses
Detecting organ stress early
Identifying a relapse before it worsens
Measuring treatment response
Avoiding unnecessary hospital stays
Creating personalized treatment plans

You become an active partner in your care team, which every specialist values.

USING YOUR JOURNAL DURING TREATMENT

Depending on your therapy, journaling is even more crucial.

Tracking During Chemotherapy (AL Amyloidosis)

Watch for:

Nausea
Signs of infection
Weight loss
Neuropathy
Extreme fatigue
Fluctuations in blood pressure

Tracking During TTR Silencer or Stabilizer Therapy (ATTR Amyloidosis)

Record:

Reactions to injections or infusions
Symptoms of liver function issues
Progression of neuropathy
Bruising
Appetite levels

Tracking During Steroid-Based Treatments

Note:

Mood swings
Blood sugar levels
Sleep issues
Fluid retention

BUILDING A ROUTINE THAT WORKS FOR YOU

Tracking should not overwhelm you. Keep it simple:

The 5-Minute Daily Formula

Symptoms: 1 minute
Vitals: 1 minute
Meals and hydration: 1 minute
Mood: 30 seconds
Medications: 1 minute
Notes: 30 seconds

Five minutes to help protect your health.

Weekly 15-Minute Review

Summarize symptoms
Review numbers
Reflect on emotional health
Note any red flags

Monthly 30-Minute Summary

Prepare for appointments
Review organ health
Check test results
Assess overall progress

FINAL THOUGHTS

Amyloidosis is a complex disease, but your journal can bring order to that complexity. With daily, weekly, and monthly tracking, you will become more aware, prepared, and protected.

A well-kept health journal enhances:

Treatment success
Organ stability
Emergency prevention
Communication with doctors
Your overall quality of life

Your journey may be challenging, but you are not alone. With structured tracking and clear guidance, you can take back control—one day, week, and month at a time.

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