What Is PAD and Why Should You Care?
Before I share the powerful stories from our inaugural PAD Leg Saver Hotline episode, let me explain what we’re fighting against.
Peripheral artery disease (PAD) is a condition where narrowed arteries reduce blood flow to your limbs. While PAD can affect any artery outside the heart, it most commonly affects those in the legs. It’s shockingly prevalent, yet remains in the shadows of public awareness.
Here’s the startling reality: advanced-stage PAD, known as critical limb ischemia (CLI), is more prevalent and deadlier than prostate cancer, colon cancer, and breast cancer combined. Some doctors have aptly called it “cancer of the legs” because of its mortality rate when left untreated.
Common symptoms include:
- Leg pain or cramping during activity (claudication) that subsides with rest
- Numbness or weakness in the legs
- Cold lower leg or foot compared to the other side
- Sores on toes, feet, or legs that won’t heal
- Shiny skin or color changes in your legs
- Hair loss or slower hair growth on legs
- Slower toenail growth
The severity ranges from asymptomatic to critical limb-threatening ischemia, where tissue death can lead to amputation. The latter is what we’re fighting to prevent with our hotline.
It’s worth noting that PAD manifests differently in various populations. Patients with diabetes and/or chronic kidney disease often develop a unique form of PAD where plaque builds up mainly in the small vessels below the knee and in the foot, rather than in the larger vessels from the abdomen to the knee. These patients often don’t experience the traditional early symptoms of claudication in their calf when they walk. Instead, they present with cramping in their toes and the top of the foot, and typically experience numbness and tingling as well.
When we launched our PAD Leg Saver Hotline, Douglas Salisbury and I created more than just a resource—we built a lifeline for patients navigating a healthcare system that too often fails them. Our inaugural episode brought together voices from across the PAD community, each story illuminating critical gaps in care that continue to put limbs—and lives—at risk.
Marina’s story struck me immediately. After approximately ten procedures on her legs within a single year, her doctors delivered a devastating ultimatum: bypass surgery or amputation.
“I was told there was nothing else they can do for my left leg,” Marina shared, her voice breaking. “It’s bypass or amputation. I don’t know enough about this to make that decision. I’m sad. I’m very upset.”
What makes Marina’s case particularly troubling is that despite these drastic recommendations, she doesn’t exhibit the textbook symptoms of critical limb-threatening ischemia (CLI). When asked if she experiences rest pain or pain at night—hallmarks of advanced PAD—she responded: “No, I don’t have pain that wakes me up. And my pain at rest is only after I exercised a lot.”
This revelation raises serious questions about whether her doctors had ever offered conservative therapy first, as required by PAD management guidelines. Like so many patients, Marina was never informed about “walking as medicine” or the body’s remarkable ability to grow collateral vessels around blockages. Only after her doctors suggested amputation did she begin researching alternatives.
“I started reading about the walking,” Marina explained. “I said, I want to try and fix this without the doom and gloom.”
She wished that her original vascular specialist would’ve educated her on this sooner versus jumping straight into a procedure, especially when she exuded symptoms of traditional early to mid-stage PAD, which is intermittent claudication: Leg cramps in the calf when you walk, that ease at rest.
The Guidelines Gap: When Medical Practice Ignores Evidence
Marina’s experience exemplifies a troubling pattern we see every once-in-awhile when patients join our network. PAD management guidelines clearly state that conservative therapy—including supervised exercise, risk factor modification, and medication—should be offered for at least three months before invasive interventions are considered.
In fact, according to the American College of Cardiology/American Heart Association guidelines, supervised exercise therapy should be the first-line treatment for claudication, along with risk factor modification and antiplatelet therapy. Multiple studies have demonstrated that structured exercise programs can improve walking distance by 50-200% in PAD patients.[1]
Yet these guidelines are ignored by a handful of vascular specialists and should always be addressed. Patients need to know to always get a second opinion before any procedure and learn about effective conservative options such as what we discuss later in the show, which include walking as medicine. Marina’s case is one that exemplifies the repercussions of treating too soon invasively, triggering the revolving door of procedures that follow, which may lead to an increased risk of pre-mature amputation.
Keep in mind, while this scenario is a problem, most amputations still occur, not because of too many procedures, but because of doctors doing nothing at all for a newer type of PAD presentation in patients typically with Diabetes and/or Chronic Kidney Disease, where the plaque builds up mainly in the small vessels below the knee and in the foot versus the larger vessels from the abdomen to the knee. These patients don’t get the traditional early symptoms of claudication in their calf when they walk. They start presenting with cramping in their toes and the top of the foot and typically experience numbness and tingling in their foot as well.
While media attention often focuses on the overuse of procedures by some practitioners, this is the more common and equally dangerous scenario involving doctors doing nothing at all with these types of patients, or jumping straight to amputation without attempting revascularization.
“More than 60% of amputations, according to Dr. Eric Secemsky’s research from Beth Israel and his team, are performed with a doctor doing nothing at all in the year prior, and 90% without even a vascular evaluation at all,” I shared with the group.[2]
This statistic should shock us all—and it’s why education and advocacy are so vital for PAD patients.
Bonnie’s Journey: Five Years Searching for Answers
For Bonnie, who joined us from Minnesota, the journey to diagnosis took five frustrating years of doctor visits and misdiagnoses.
“I’ve been going to doctors for five years to try and get a diagnosis. And every doctor had something different,” she shared. “I started to feel like I was a quack when I’d go into the doctor.”
Bonnie’s experience is distressingly common. A Global PAD Association poll of more than 400 patients in our network revealed that 70% were misdiagnosed upon first presentation of textbook PAD symptoms of leg pain, leg cramps, foot cramps, or neuropathy. The most common misdiagnoses were diabetic neuropathy, back issues, arthritis, and simply “old age”—dismissals that delay critical care and allow the disease to progress unchecked.
Now diagnosed with PAD affecting her iliac arteries, Bonnie struggles with severe pain that limits her mobility. “The pain gets so intense… I can’t go up a hill. I can’t walk around a block.”
Her experience highlights how PAD can dramatically impact quality of life, often long before a proper diagnosis is made. A 2019 study in the Journal of the American Heart Association found that delays in PAD diagnosis are associated with significantly worse outcomes, including higher rates of amputation and mortality.[3]
The Emotional Toll: More Than Just Physical Pain
Beyond the physical challenges, our conversation revealed the profound emotional impact of living with PAD. For Mike and his partner Jordy, adapting to life with PAD has meant redefining their expectations and finding new ways to appreciate life.
Jordy shared wisdom that resonated with everyone: “When you get this kind of diagnosis, yeah, it’s going to bump you back on your butt and it is a kick. But rather than focusing on what you’ve lost, focus on what you can do.”
Douglas echoed this sentiment, noting how PAD has changed but not defined his life: “I have PAD and CAD, but that doesn’t mean I’m dead. And that’s not who I am. I’m also a brother. I’m also a counselor. I’m also this. I’m also that… It makes a difference. It does. It impacts everything I do. But it does not define me today.”
Wanda, who walks only inside her house now due to claudication pain, spoke about the challenges of hiding her condition at work: “I don’t want him to know how bad it is when I do get up and then walk for five or 10 minutes and my calf is cramping like hell. I’m limping back to my desk.”
These stories highlight an often-overlooked aspect of PAD: the psychological and emotional toll that can be just as debilitating as the physical symptoms.
Walking as Medicine: Tools and Techniques
A significant portion of our discussion focused on practical strategies for improving circulation through exercise, particularly for those with severe claudication like Bonnie.
Mike introduced the group to the “PAD 100” exercise developed by Dr. Kevin Morgan, an 82-year-old pathologist and PAD patient who competes in World Ironman Triathlons despite having full blockages throughout his legs.
“Instead of getting straight up in the morning once you wake up, just kind of throw your blanket off and put a pillow down at your feet,” Mike explained. “You’re opening your toes at the same time and then when you grip, every time that two feet go down, that’s classed as one… Once you actually stand up, you can feel a little bit better. It makes it a lot easier just to take that extra step.”
This simple morning routine helps wake up the calf muscles and improve circulation before you even get out of bed. For many PAD patients, it can make the difference between a painful morning and a manageable one.
Douglas also emphasized the importance of proper footwear, referencing videos from Dr. David Alper in our support group: “I never thought about my toes spreading out a little more or buying shoes that were too tight on my toes causing circulation issues.”
The Importance of Asking the Right Questions
Through our conversations with Marina, Bonnie, and others, several critical questions emerged that every PAD patient should ask their doctor:
- What is the purpose of this procedure? (Remember: procedures should be for pain relief and healing wounds, not just to open arteries)
- What’s the contingency plan if this procedure doesn’t work or fails later?
- Have I tried all conservative therapy options first?
- For those with iliac artery issues: Will you be using intravascular ultrasound (IVUS) to properly size my vessels?
- What does my outflow look like? (Understanding the “plumbing” below where they’re working)
Douglas emphasized that before any procedure, “You always want to know what is the contingency plan. What is the contingency plan when this fails?” This type of forward-thinking can be lifesaving.
Resources for Your PAD Journey
Throughout our conversation, we highlighted the many resources available through the Global PAD Association:
- Our PAD Leg Saver Hotline: 1-833-PAD-LEGS (1-833-723-5347)
- The PAD Support Group: padsupportgroup.org
- Our Walking Support Group: walkingsupportgroup.com
- Weekly “Collateral Nation” podcast featuring Dr. Kevin Morgan every Wednesday
- Smoking cessation group meetings every Monday
For physicians, we emphasized the importance of using all available imaging tools, particularly intravascular ultrasound (IVUS) for iliac artery procedures. As I explained from a case I observed: “The IVUS showed a 98% blockage… It was like that 2% of blood flow was the angle that went right across the top that’s what the scanner caught.”
A Call to Action
If you’re experiencing symptoms of PAD or have been diagnosed and feel your treatment plan isn’t working, please call our Leg Saver Hotline at 1-833-PAD-LEGS. Our team is ready to:
- Help you understand PAD management guidelines and what treatments you should consider discussing with your doctor
- Connect you with specialists experienced in guideline-based PAD care
- Provide resources for structured exercise programs in your area
- Offer emotional support through our network of PAD warriors
- Help you navigate insurance coverage for treatments
No one should lose a limb because of inadequate PAD care or failure to follow established guidelines. Every call to our hotline is a step toward changing the narrative around this disease.
As Douglas reminded us, “We all make a difference. It’s one making a difference for another one makes a difference for another, but it takes all of us together to do that.”
References
- McDermott MM, et al. (2017). Effect of Granulocyte-Macrophage Colony-Stimulating Factor With or Without Supervised Exercise on Walking Performance in Patients With Peripheral Artery Disease: The PROPEL Randomized Clinical Trial. JAMA, 318(21), 2089-2098.
- Secemsky E, et al. (2022). Gaps in Peripheral Artery Disease Care and Outcomes: Analysis of Medicare Claims Data. Circulation: Cardiovascular Quality and Outcomes, 15(1), e007558.
- Berger JS, et al. (2019). Mortality and Cardiovascular Events in Patients With and Without Peripheral Artery Disease: A Nationwide Cohort Study. Journal of the American Heart Association, 8(16), e012289.
- American Heart Association/American College of Cardiology. (2016). Guideline on the Management of Patients With Lower Extremity Peripheral Artery Disease. Circulation, 135(12), e726-e779.
- Conte MS, et al. (2019). Global Vascular Guidelines for Patients with Chronic Limb-Threatening Ischemia. Journal of Vascular Surgery, 69(6S), 3S-125S.
The PAD Leg Saver Hotline is a service of the Global PAD Association. All advice provided is for informational purposes only and should be discussed with your healthcare provider before implementation. Always consult with your physician before beginning any exercise program or making changes to your treatment plan.