Surviving blood clots

The killer they almost missed.

My ER sent me home four times. The fourth visit, a CT scan finally found clots in both lungs, my leg, my neck, and my arm. My hematologist said: “Too many to count.”

I wrote this for survivors, newly diagnosed patients, and caregivers who need plain-language advocacy, not panic and not fluff.

If you suspect a blood clot right now, call 911 or go to the ER immediately.

In loving memory of

Christy Muenchau

Sister. Loved. Lost to a blood clot too soon.

This page is for the next person who needs to read it.

Medical disclaimer — read first This page shares Rick Muenchau’s personal experience as a blood clot survivor. It is not medical advice. If you suspect you or someone you love has a blood clot right now, call 911 or go to the nearest ER immediately. Do not use this page as a substitute for emergency care, diagnosis, treatment, medication guidance, or professional medical advice.
Why this page matters

Different people arrive here carrying different fear.

I am Rick Muenchau. I survived blood clots in both lungs, my leg, my neck, and my arm. My hematologist would not give me a number. He said, “Doesn’t matter. Too many to count.”

I wrote this page for three people: the survivor who needs to know they are not alone, the newly diagnosed patient who needs truth without panic, and the caregiver who is watching all of this happen and does not know what to do next.

My sister Christy did not survive a blood clot. I did. This page exists because of that.
The hidden killer

The symptoms ER doctors miss.

The textbook list for blood clot symptoms is familiar: sudden shortness of breath, chest pain that worsens with deep breathing, coughing sometimes with blood, leg swelling, leg pain, and rapid heart rate.

What is not always obvious is how different the lived experience can feel when your body is in danger but your symptoms do not present neatly.

Textbook signs

What they often look for

  • Sudden chest pain or trouble breathing
  • Coughing up blood
  • One-sided leg swelling, pain, warmth, or redness
  • Rapid heartbeat or fainting
  • Recent surgery, immobility, travel, or known clotting risk
My reality

What I actually had

  • Symptoms that looked like an allergic reaction
  • Flushed face, red nose, burning ears
  • Severe stomach pain
  • Rapid weight loss while barely eating
  • Blood pressure of 220/116 — and still sent home

If a survivor says their clots showed up “out of nowhere,” sometimes what they mean is: the symptoms were there, but they did not fit the expected pattern. Or no one looked in the right place soon enough.

Do not use this section to self-diagnose. Use it as a reason to seek urgent medical care if something feels wrong. If multiple warning signs are present, especially chest pain, shortness of breath, fainting, coughing blood, or one-sided leg swelling, get emergency help.

The full survivor account

Read the four-ER-visit story and what it felt like to be inside a pulmonary embolism. Read the survivor account.

PE reality

What a pulmonary embolism felt like.

A pulmonary embolism is a blood clot that travels to the lungs. Mine did not feel like a neat checklist. It felt like my body knew I was in danger before my brain could name what was happening.

It was as if a belt was wrapped around my chest and someone was tightening it one notch at a time. Every hour, another notch. Every day, another notch. There was no relief.

I could not take a full breath. Not once. Every breath was partial. The chest pain came in spikes — the kind that make you stop walking and put a hand on the wall.

The sense of doom people describe is not weakness. It is your body sounding an alarm before the rest of you has caught up.

If you are experiencing chest pain, shortness of breath, fainting, coughing blood, or symptoms that make you think “something is seriously wrong,” stop reading and seek emergency care now.
Silent risk

What a DVT can feel like.

A DVT, or deep vein thrombosis, is a blood clot in a deep vein, often in the leg. A DVT is dangerous because it can break loose and travel to the lungs.

Possible signs

Pay attention to

  • One-sided leg swelling
  • Pain or cramping that does not match an injury
  • Warmth in the affected area
  • Red, blue, pale, or unusual skin color changes
  • A deep pain that feels different from a normal muscle strain
Risk context

Tell the doctor if you have

  • Recent surgery or hospitalization
  • Long travel or prolonged immobility
  • Pregnancy or postpartum status
  • Hormone therapy or hormonal birth control
  • Family history of blood clots
  • Cancer treatment or known clotting condition
If you have clot risk factors and new one-sided leg pain or swelling, do not assume it is just a muscle strain. Get medical evaluation.
In a crisis

What to tell an ER doctor.

The single most useful tool I have ever carried is a script. In triage, details matter: symptoms, timing, risk factors, family history, medication history, and what changed from your baseline.

Save this on your phone. Print it. Hand it to the front desk if you cannot say it clearly.

Patient advocacy script

“I am concerned I may have a blood clot. My symptoms are [list symptoms and when they started]. My risk factors include [family history, recent surgery, travel, immobility, medication, clotting disorder, pregnancy/postpartum, cancer treatment, or other risk]. My baseline blood pressure is [your number]. My current blood pressure is [your number]. I would like to be evaluated for DVT or pulmonary embolism.”

If they tell you it is anxiety, indigestion, or muscle strain and you still believe something is wrong, ask for the reason to be clearly documented in your chart. Stay respectful. Stay clear. But do not disappear inside your own fear.

“Can you please document in my chart why blood clot evaluation is not being pursued despite my symptoms and risk factors?”

Free patient advocacy document

Get the printable version of this script plus other survivor resources in The Rebuild Library.

Daily reality

Life on blood thinners.

This is the part nobody fully explains until you are already living it. Blood thinners can be lifesaving, but they also change the way you move through the world.

First tried

Eliquis

A newer direct oral anticoagulant. It works for many patients. In my case, I clotted through it — which is part of why my care had to change.

Long-term management

Warfarin

An older anticoagulant with a different mechanism. For me, it meant INR testing, food consistency, interaction checks, and a new relationship with risk.

INR testing

INR testing became part of my life. My doctor sets the target range and adjusts dose based on results. That number affects bleeding risk, procedure planning, falls, bruising, and what we do next.

Food and medication awareness

Warfarin interacts with vitamin K and with many medications and supplements. I do not treat food like the enemy. I treat consistency like the strategy. Every new prescription means a conversation with my care team or pharmacist.

Bleeding awareness

A cut, a nosebleed, a fall, or a hard bump matters differently now. I do not take risks I used to take. That does not mean life is over. It means the rules changed.

The recovery map

The first 90 days after diagnosis.

The first 90 days after a clot diagnosis can feel medically urgent, emotionally disorienting, and deeply lonely. This is the survival map I wish I had been handed on day one.

Phase 1 — Acute stabilization

01

Take medication exactly as prescribed

Set alarms. Use a pill box. Ask questions before changing anything. In the early window, consistency matters.

02

Know when to return for help

New chest pain, shortness of breath, fainting, severe headache, new swelling, or concerning bleeding should be taken seriously.

03

Keep records close

Save discharge papers, imaging reports, medication lists, allergies, specialist names, and appointment dates in one place.

Phase 2 — Build your care team

04

Establish care with a hematologist

A specialist helps manage anticoagulation, risk factors, family history, testing questions, and long-term treatment planning.

05

Use a pharmacist like part of your team

Pharmacists often catch medication interactions before anyone else. Build that relationship.

06

Talk to your family

If clots may run in your family, relatives need to know. Their risk conversations with doctors may change because of your story.

Phase 3 — Rebuild body and mind

07

Start doctor-approved movement

When your doctor clears it, walking is often the first rebuilding step. Start slow. Build over weeks, not days.

08

Address the mental side

Anxiety, fear, grief, and PTSD-like symptoms are common after a near-fatal diagnosis. That is not weakness.

09

Stop chasing the old version

The goal is not to pretend nothing happened. The goal is to build the next version with honesty.

Know your risk

Family history and genetic risk.

Family history matters. If a parent, sibling, child, or close relative has had a clot — especially at a younger age or without a clear trigger — tell your doctor.

Ask about

Inherited clotting conditions

Examples can include Factor V Leiden, prothrombin gene mutation, protein C or S deficiency, antithrombin deficiency, and other thrombophilias. Your doctor can decide whether testing is appropriate.

Why it matters

Risk planning changes decisions

Known clot history can affect surgery planning, travel precautions, pregnancy or postpartum conversations, hormone medication decisions, and prevention strategy.

If blood clots run in your family, do not treat that information as background noise. Bring it into the room with every doctor who needs to know.
For the caregiver

For the caregiver watching all of this.

If you are the spouse, parent, child, or friend of someone who just had a blood clot, this section is for you.

The hardest part of my recovery was not only on my body. It was on Corrine’s. She advocated through ER visits, listened when I could barely speak for myself, and carried the weight that did not show on any chart.

Caregivers carry a weight that does not show on any chart.
Permission

You are allowed to be human

  • You are allowed to be scared.
  • You are allowed to be angry that this is happening.
  • You are allowed to need help yourself.
  • You are not weak because you are exhausted.
Practical moves

What helps in real life

  • Keep a medication list available.
  • Know baseline blood pressure and allergies.
  • Track specialists and appointment dates.
  • Bring a witness to major appointments.
  • Trust your gut when something feels wrong.

From the other side

Read Corrine’s caregiver story. If you are caregiving for a blood clot survivor right now, you are not the first one to walk this road.

Survivor’s truth

Surviving when someone you love did not.

A blood clot killed my younger sister Christy. Blood clots almost killed me.

I often wonder why I am still alive and she is not. If you survived something that someone you love did not, you may know that kind of question too.

You do not have to know why you survived. You just have to decide what you are going to do with the survival.

Survivor’s guilt is real. Mourning while still in your own treatment is real. Being grateful and heartbroken in the same breath is real.

I have decided that the Lord has a bigger purpose for me. That is the answer I hold onto when the days get dark. Yours may sound different. But hold onto something.

I do not like to lose.
The comeback

Rebuilding a career after a PE.

A pulmonary embolism does not just damage your lungs. It damages your relationship with your own body. After mine, I could not return to work the way I had before.

I had been the number one timeshare closer in Branson, Missouri. That work required full physical presence, energy, and a body I could trust. I no longer had those things.

I chose to build the system.

What I learned is what I now teach inside the Rebuild Movement: if your work depends entirely on your body showing up perfectly, a medical crisis can expose how fragile the whole structure is.

Help and resources

Resources and patient advocacy.

The right information at the right moment can save a life. Start with emergency care if you are in immediate danger, then use trusted patient education resources to understand what questions to ask next.

Patient advocacy

National Blood Clot Alliance

Education, survivor support, and awareness resources from Stop the Clot.

Visit Stop the Clot →
Federal resource

CDC Blood Clot Information

Official public-health information about blood clots, risk factors, diagnosis, treatment, and prevention.

Visit CDC →
Medical education

Mayo Clinic

Clinical overview of pulmonary embolism symptoms, causes, risk factors, and treatment.

Visit Mayo Clinic →
Rebuild resource

The Rebuild Library

Free patient advocacy documents, ER scripts, and survivor resources from the Rebuild Movement.

Open the Library →

Share this page. It could save a life.

Most people do not think about blood clots until they have to. Share this with the person who has risk factors, the family with a clot history, the caregiver who needs language, or the survivor who needs to know they are not alone.

Rock bottom is a foundation, not a grave.

Truth is the weapon.

Build or die.

Step 01

Read the full survivor story

The minute-by-minute account of four ER visits, the heparin moment, and what “too many to count” meant. Read here →

Step 02

Start with free resources

Open the Rebuild Library for survivor resources, advocacy language, and printable support tools. Open the Library →

Step 03

Build with us

Join the deeper Rebuild Movement path for people rebuilding on hard mode. Join free →

Medical disclaimer — repeated This page shares Rick Muenchau’s personal experience as a blood clot survivor. It is not medical advice. If you suspect you or someone you love has a blood clot, call 911 or go to the nearest ER immediately. The content on this page should not be used as a substitute for professional medical care, diagnosis, or treatment. Medications, testing, dosing, and management approaches discussed here are specific to Rick’s experience and should not be used as a guide for your own treatment without consulting your physician.