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"Never Go Straight to Amputation": Real Voices from the PAD Leg Saver Hotline

How one late-night call to the PAD Leg Saver Hotline sparked a powerful conversation about survival, second opinions, and redefining hope for those living with Peripheral Artery Disease.

· Patient Stories

The call came in urgent and desperate.

A man in Florida—forty-something, already missing one leg—was being told by his hospital to prepare for life as a bilateral amputee. "They said he might as well get used to it," his friend explained, her voice shaking.

But here's what made this case different: he still had pulses in his remaining foot. When he asked his doctor if there were other options, the response was chilling: "No, you're going to lose it at some point. You might as well get used to being a bilateral amputee now."

That sinking feeling never gets easier. This is precisely why we built the PAD Leg Saver Hotline at 1-833-PAD-LEGS and padhelp.org—so no one facing Peripheral Artery Disease hears "there's nothing we can do" without exploring every option.

Within hours, we had him scheduled with a different vascular specialist for Friday. His friend, who mentioned her own leg cramps during our call, agreed to get checked too. She also had PAD.

One story saves another. That's how this works.

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This week's PAD Leg Saver Hotline Podcast gathered our growing community of PAD Patient Warriors—people who've fought to keep their legs and reclaim their lives. What emerged wasn't just support, but practical, life-saving knowledge.

Douglas Salisbury, our PAD Patient Warrior Task Force co-lead, was missing—literally wiring electricity for neighbors affected by a fire. "That's what we do," I told the group. "We help each other."

And help each other we did.

Lesson 1: Demand Answers, Not Just Diagnoses

Beth's voice trembled as she shared news of her second stroke in twelve months, but her resolve was steady.

Her care team was finally digging deeper—ordering a 30-day heart monitor to check for atrial fibrillation (AFib), the silent rhythm disorder that throws blood clots without warning. If that doesn't reveal the cause, they'll implant a loop recorder for continuous monitoring.

The takeaway: Beth's experience illustrates a critical principle—if you've had strokes, leg cramps, or unexplained pain, don't accept "that's just how it is." Demand to know why. PAD rarely exists in isolation. It connects to your heart, brain, and entire vascular system.

As Beth put it after months of questioning: "I want to know what's causing these strokes. Why am I having so many? Why is this happening? I want to know."

That insistence on answers—not acceptance—is what advocacy looks like.

Lesson 2: Walking Works—Until It Doesn't

Clay shared encouraging news about his wife's progress. Through walking, diet, and discipline—no stents, no surgeries—she was improving. Her doctor was proud. Conservative management was working.

But Dawn's story revealed the other side of that equation.

"Walking's great," she said, "until your legs won't hold you up."

For years, doctors told her it was her back. Prescribed Flexeril and Naproxen. "My husband found me crying on the shower floor." At the ER, one look at her leg changed everything. Emergency surgery followed. "The surgeon told my husband, First I'll try to save her life, then her leg. I was hours from death."

The takeaway: Walking is powerful medicine for PAD—but if your symptoms worsen despite walking, if the pain becomes debilitating, if something feels wrong, you need immediate re-evaluation. Don't let anyone dismiss escalating symptoms as "just your back" or "not serious yet."

As Dawn emphasized: "Don't ever let a doctor tell you you're fine when your gut says something's wrong."

Lesson 3: Medication Management Can Be the Difference Between Amputation and Survival

We discussed a patient who'd endured ten vascular procedures—ten—yet kept re-clotting. The problem? No one had put him on proper anticoagulant therapy.

When a new doctor saw him scheduled for amputation, he said, "Wait. Let's try a heparin drip first." After stabilizing him with IV blood thinners, the doctor performed minimal intervention—just clearing the clot—then prescribed the right oral anticoagulation protocol.

He's been stable ever since.

The takeaway: Sometimes saving a leg isn't about another stent or bypass. It's about the right medication cocktail. If you're experiencing repeated blockages, ask these questions:

Am I on maximum medical therapy for my condition?

  • Should I be tested for clotting disorders (Factor V Leiden, Protein S deficiency, MTHFR mutation)?
  • Does my antiplatelet medication (like Plavix) actually work for my body? (Some people need sensitivity testing)
  • Do my medications interact poorly with each other?
  • Marie has been waiting two years for a Plavix-sensitivity test. Beth is still on aspirin alone despite repeated strokes. Dawn requires Warfarin for life because her blood "moves around too much" for other anticoagulants to work safely.

Your medication regimen must match your specific situation. If you're clotting despite treatment, something needs to change.

Lesson 4: Ask WHY You Have PAD

When Nancy asked whether she should be tested for clotting disorders—her father had them—the answer was immediate: absolutely.

But the bigger question is one too few doctors explore: Why do you have PAD?

Is it high blood sugar? Smoking? Kidney disease? Or is it hereditary—something like MTHFR mutation (the "mother-effer gene"), which prevents your body from properly processing B vitamins, leading to homocysteine buildup that damages artery walls "like nails scraping" them, as I explained to Nancy.

The takeaway: When diagnosed with PAD, don't stop at "you have atherosclerosis." Demand root cause analysis:

Test for genetic clotting disorders if family history suggests it

  • Get advanced lipid panels (not just basic cholesterol), like those from Boston Heart Diagnostics
  • Check inflammatory markers (CRP, LPPLA2)
  • Consider seeing a hematologist if you're a "clotter"
  • Ask about homocysteine levels and MTHFR testing
  • Once my father was diagnosed with MTHFR and started methylated B vitamins and eliminated enriched flour, his artery damage stabilized. Sometimes the fix is surprisingly straightforward—if you know what you're fixing.

Lesson 5: Never Accept "You'll Lose It Eventually" Without a Second Opinion

The Florida man with pulses in his foot. The patient told amputation was inevitable after ten procedures. The person whose CT angiogram showed "nothing" but whose symptoms screamed otherwise—until a doctor used intravascular ultrasound (IVUS) and found a 98% blockage the imaging had missed.

The takeaway: Before any irreversible decision, exhaust every option. As Dr. Nicholas Mouad, our PAD Doctor of the Year, puts it: "Before you make an irreversible decision, make sure you've exhausted all efforts."

If life isn't immediately on the line, you have time to:

Get imaging reviewed by a different specialist

  • Ask about advanced diagnostic tools (IVUS, for example)
  • Explore different treatment approaches (deep vein arterialization, for instance)
  • Ensure you're on optimal medical therapy first
  • Some technologies and techniques are slow to roll out. Your doctor may simply not know about newer options. That doesn't make them a bad doctor—it makes getting a second opinion essential.

Lesson 6: You Know Your Body Better Than Anyone

Alan, Beth, Dawn, Marie, Bonnie—everyone on the call had experienced some version of being dismissed. Told their symptoms weren't serious "yet." Told to wait. Told it was something else.

"99.9% of the time, you're right," Dawn said. "There is something wrong. You know your body. You know how you feel every day. You know it's not normal."

The takeaway: Keep calling. Keep advocating. Don't worry about being a "pain" to your medical team. If you feel something is wrong, persist until someone listens.

As one participant noted: "Don't wait until it is a problem. Take care of it now."

What We Do: Your Second Opinion Before the Second Opinion

By the time Douglas finally dialed in, the chat was buzzing. April asked about her father's gangrene battle. Nancy took notes on methylated supplements. Others swapped doctor recommendations and medication protocols.

"Think of us as your second opinion before the second opinion," Douglas said.

That's exactly what we are. We don't give medical advice—we're not doctors. But we help you:

Formulate the right questions for your appointments

  • Understand your imaging and test results
  • Connect with specialists who have advanced tools and techniques
  • Navigate medication management discussions
  • Prepare a one-page summary of your goals before appointments
  • Know when to push back and when to get another opinion
  • For decades, PAD patients were told amputation was inevitable. Today we know better—and we have the community, the connections, and the knowledge to prove it.

Before You Accept the Irreversible

If you're reading this and facing difficult decisions about your vascular health, remember:

Never go straight to amputation unless your life is on the line. If you have wet gangrene (a medical emergency), if pain is completely uncontrolled despite all interventions, if infection is spreading—yes, amputation may be necessary.

But if the doctor says "you'll lose it eventually" or "might as well get used to it now"—and you still have pulses, you're not septic, life isn't immediately threatened—make one call first:

📞 1-833-PAD-LEGSor visit padhelp.org

Someone will answer. We'll help you ask the right questions. We'll connect you with specialists who have different tools. We'll make sure you've explored every option before making a decision you can't reverse.

Because as Dawn reminds us: "Life with no leg is definitely not as stinky dory as they think it is. So if you can keep those legs, keep them legs."

Join the Movement

Living with Peripheral Artery Disease? You don't have to navigate it alone.

Join our community of PAD Patient Warriors in our Facebook group: Peripheral Arterial Disease Support (https://www.facebook.com/groups/peripheralarterialdisease). Share your journey, ask questions, and learn from people who've been where you are.

Subscribe to the PAD Leg Saver Hotline Podcast on your favorite platform and never miss stories of survival, advocacy, and actionable medical information.

Together, we save lives—and legs.