Pathway Step 4 · Build your kit

🧰 Patient Tools Kit — Pulmonary-Embolism

The everyday tools a Certified Prepared Patient keeps within reach: the rules that decide an emergency, the order to make calls, and the trackers that keep the routine on course. Print the cards, fill in your contacts, and keep this kit where the whole household can find it.

What’s in your kit

Eight tools. The first three are the rules you must know cold — they decide when something is an emergency. The rest keep the daily partnership steady and tell you where your role begins and ends.

1 The Recurrence Rule 2 The Bleeding Risk Rule 3 Other Red Flags 4 The Contact Ladder 5 Anticoagulant 6 PE Meds 7 The ER Go-Bag 8 Speak Up / Trust the Team
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1 · The PE Recurrence Rule

Know this cold

After a PE, the risk of another clot is highest in the first 3-6 months. Anticoagulant prevents recurrence; missing doses or stopping early restarts the risk.

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PE RECURRENCE RULE

Patient card
New shortness of breath
Sudden new breathlessness, chest pain with breathing, rapid pulse — could be recurrent PE. 911.
Leg swelling and pain
New one-leg swelling with calf pain — could be DVT (clot in leg). Often precedes PE. ED today.
Anticoagulant on time
Apixaban, rivaroxaban, warfarin — never skip. Every dose, every day.
Your move as patient: Set up pillbox + phone alarm. Watch for leg symptoms or new breathlessness. Tell every clinician about the anticoagulant.
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2 · The Anticoagulant Bleeding Rule

Know this cold

Anticoagulants prevent recurrent clots but raise bleeding risk. Most bleeding is minor and manageable; severe bleeding is an emergency.

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PE BLEEDING RULE

Patient card
Major bleeding signs
Vomiting blood, black tarry stools, severe nosebleed not stopping, severe head injury, blood in urine.
Minor bleeding signs
Bruising, gum bleeding, prolonged bleeding from small cuts — usually manageable. Tell team but rarely emergency.
NEVER stop alone
Even with minor bleeding, never stop anticoagulant on your own. Call the team — they balance risks.
Your move as patient: Know what counts as major vs minor bleeding. Have direct number for the anticoagulation clinic. Bring bleeding episodes to visits.
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3 · Other Red Flags — Emergencies

Know this cold

Beyond the two red rules above, these situations also mean immediate help. When in doubt, the home care plan handles ordinary days — these are not ordinary.

💨 Sudden severe shortness of breath

Could be recurrent PE. 911.

Call 911 now

❤️ Chest pain (sharp, worse with breath)

Could be recurrent PE. 911.

Call 911 now

🪨 Vomiting blood / black stools

Major GI bleeding on anticoagulant. ED.

ED now

🧠 Severe headache + anticoagulant

Could be intracranial bleed. ED.

ED now
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4 · The Contact Ladder

Fill in & print

When something is wrong, you should not be deciding who to call in the moment — only which rung you are on. Fill in the names and numbers now, while things are calm.

1
Rung 1 · The plan

You's PE recovery plan

Daily anticoagulant, follow-up imaging, duration of therapy.

Action plan kept: ________________________
2
Rung 2 · The specialists

Hematology / pulmonology / anticoagulation clinic

For dose adjustments, lab questions, recurrent symptoms.

Specialty team: ________________________
3
Rung 3 · Everyday care

Primary care provider

For routine care, comorbidities, vaccines.

Primary care: ________________________
4
Rung 4 · Emergency

911 / Emergency Department

For new severe breath, chest pain, major bleeding, head injury.

Preferred ED: ________________________
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5 · Daily Anticoagulant Taken

Tap to log

Tap if the anticoagulant was taken today. Continuous adherence is critical.

Goal 100%. Missed doses raise clot risk — if a dose is missed, follow the team’s missed-dose plan.

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6 · PE Anticoagulant Support

Daily routine

PE treatment is anticoagulation — usually 3 months minimum (provoked PE), often longer or lifelong (unprovoked PE, recurrent PE, certain genetic conditions).

The principle: the anticoagulant works ONLY when taken. Missing doses lets the body think clotting is OK again. Even one missed day raises risk. Bring the medicine to every clinic visit, every procedure, every dental visit.

DOACs vs warfarin

DOACs (apixaban, rivaroxaban, dabigatran, edoxaban) need no INR checks but cost more. Warfarin needs INR checks but is cheaper.

Procedure planning

Before any procedure (dental, colonoscopy, surgery), coordinate hold/restart with the prescriber. Don’t stop on your own.

No NSAIDs

Ibuprofen, naproxen raise bleeding risk on anticoagulants. Use acetaminophen.

Watch for clotting failure

New PE symptoms WHILE on anticoagulant = call team urgently. Some patients need higher doses or different agents.

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7 · The ER Go-Bag

Pack once, check monthly

A crisis is not the time to gather paperwork. Pack a go-bag now and keep it by the door. Tap each item as you add it — your checklist saves on this device.

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8 · Speak Up / Trust the Team Guide

You boundary

The hardest skill in patienting is knowing when to act and when to hold back. A great patient is a reliable backup and a fierce advocate — without taking your own care away from them.

💬 Speak up when…

  • A red-flag rule is met and a clinician is dismissing it — restate the rule and the home plan calmly and clearly.
  • You are in the ED and your home plan is being ignored — ask for it to be looked at, and ask for a senior clinician if needed.
  • You are about to be given a medicine or test that wasn’t in the plan — ask why, and ask about alternatives.
  • Your symptoms are escalating between visits — call before it becomes an ER trip.
  • You feel unheard or rushed — it’s OK to say "I need a minute to ask one more question."

🤝 Trust the team when…

  • They have proposed a guideline-based treatment that fits your plan.
  • You disagree from fear rather than from new information — pause, ask one question, listen.
  • You are on a stable run that’s working — small adjustments often beat big changes.
  • Your care partner’s instinct and the team’s recommendation agree — that’s a strong signal.
  • You’ve done your part of the homework — logs, questions, honest history — and now it’s the team’s turn.
The principle: you trained to the depth your clinicians use so you could be a partner in your own care, not a passenger. Speak up for safety and accuracy; trust the team for guideline-based treatment and steady adjustment. When unsure, ask a clarifying question first: “Can you walk me through your reasoning?”
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