Four and a half years of unexplained leg pain.
Multiple doctors.
Countless misdiagnoses.
And finally, a devastating verdict: amputation and, likely, death within two years.
This was the reality facing 77-year-old Nancy when a vascular surgeon failed to clear blockages in her leg arteries. But thanks to her daughter Rebecca’s refusal to accept this grim prognosis and a timely connection to specialized care, Nancy is now running through department store aisles rather than facing life as an amputee.
“I caught myself running full speed,” Nancy shared during our recent “Save My Piggies” special episode of The Heart of Innovation podcast. “Only a few months earlier, I had been riding a cart throughout that store. I could not walk through that store even once.”
Nancy’s journey highlights a troubling reality in American healthcare: peripheral arterial disease (PAD) remains frequently misdiagnosed, misunderstood, and mistreated, leading to thousands of preventable amputations annually.
Four Years of Misdiagnosis: A Medical Journey Through the Wilderness
Nancy’s story begins with what seemed like simple leg cramps. At 77 (now approaching 78), she expected some signs of aging, but the sudden onset of debilitating pain in her right foot and calf wasn’t normal.
“I kept looking for stuff out on the internet. What do I do? What do I do?” Nancy recalled. Like many PAD patients, she tried everything—increased hydration, potassium supplements, tonic water, pickle juice—without relief.
What followed was a medical odyssey that would last years. A chiropractor with laser therapy. Multiple urgent care visits. Pain medication prescriptions. Referrals to specialists for everything except vascular issues. Her right foot turned bright red, a classic sign of circulation problems, yet the connection to vascular disease wasn’t made.
“All the other doctors, they were referring her to everything except for vascular,” Rebecca explained. “Nobody ever stopped to think vascular.”
The Devastating Diagnosis: “Keep Her Comfortable”
The turning point came when a podiatrist finally ordered an ultrasound, which revealed significant arterial blockage. Nancy was referred to a vascular surgeon who attempted a procedure to clear the blockages but was unsuccessful.
What happened next demonstrates why second opinions are critical in PAD cases. Rebecca described the aftermath: “The nurse explained to me, ‘Yeah, so the procedure failed. He couldn’t unblock her. So you’re basically going to take her home and keep her comfortable. She’s going to lose her leg. And then she’s going to die within two years after that.’”
Most shocking was that this devastating news was delivered by a nurse—the surgeon never returned to speak with them.
The Lifeline: Finding Hope Through Patient Advocacy
Unwilling to accept this fate for her mother, Rebecca began researching alternatives. “I started pulling up websites… I’m out there reading up and I’m like, this just doesn’t make sense. They talk about other things that happened before you go straight to amputation.”
Her persistence led her to a Facebook support group run by the Global PAD Association. After reading posts from others who had faced similar situations, she gathered the courage to post about her mother’s situation.
The response was immediate and unanimous: “Call Kym, call Kym, call Kym.”
That “Kym” was ME, Kym McNicholas, CEO of the Global PAD Association, which operates what patients affectionately call the “leg saver hotline.” This connection proved to be the turning point in Nancy’s story.
The Call That Changed Everything
Rebecca’s call reached me while I was attending an advanced vascular conference in London, surrounded by world-renowned specialists. Understanding the urgency, I immediately connected Rebecca via three-way call with Dr. Kirk Minkus, a vascular specialist known for taking on challenging cases.
“Dr. Minkus is on, listens to like just a few quick things and says, ‘I need to see her now. I need to see her this coming week,’” Rebecca recalled.
When they met with Dr. Minkus, he was astounded by Nancy’s condition—completely blocked arteries from her groin to her toes on the right side—but unlike the previous surgeon, he wasn’t ready to give up.
Advanced Interventions: Beyond the Standard Approach
Dr. Minkus explained the extraordinary measures required in Nancy’s case: “She had a particularly bad situation because she had complete blockage of her artery in her right leg from her hip down to her knee. And then she had kind of sporadic spider type artery vessels going down… her entire leg was living on her profunda artery.”
Over a series of three procedures, Dr. Minkus was able to restore enough blood flow to keep her on her feet, through innovative techniques, including a retrograde approach—accessing arteries from behind the knee and working upward—and navigating through areas other physicians might have deemed impassable.
“She would have lost her legs if somebody didn’t say, ‘You know what, I’m going to make a little bit more of an effort,’” Dr. Minkus explained.
The Missing Prescription: Walking as Medicine
Perhaps most remarkable about this story isn’t just the technical skill that saved Nancy’s leg, but what came after. Unlike the previous medical team that offered no hope or path forward, Dr. Minkus prescribed something surprisingly simple yet transformative: walking.
“Since we saved your leg, you need to walk and you need to use this leg and you need to keep the blood pressure going and keep it going through the foot,” he told Nancy.
Mother and daughter took this advice to heart, establishing a rigorous walking regimen. “We both have basic treadmills,” Rebecca shared. “We broke up the 10,000 steps a day into four or five segments and we were doing it on our respective treadmills, but over FaceTime together.”
This dedication to supervised exercise therapy—the first-line treatment recommended by cardiovascular societies worldwide—has been transformative. Nancy also made significant lifestyle changes, eliminating her six-cans-a-day soda habit and improving her diet.
The Crisis of PAD Awareness in American Healthcare
Nancy’s story illustrates a troubling reality: peripheral arterial disease remains dramatically underdiagnosed and undertreated in the United States. As Dr. John Phillips, interventional cardiologist and co-host of our podcast noted, “It just speaks to the lack of awareness that not only patients have, but also clinicians who are treating patients. It’s sad, frankly.”
The statistics are sobering. Every four minutes, someone in America undergoes an amputation due to PAD and diabetes. Yet according to research published in the Journal of the American Heart Association, up to 85% of these amputations are potentially preventable with early intervention and appropriate care.
Even more concerning is that amputation is not an equal-opportunity outcome. Studies show significant disparities in amputation rates based on race, geography, and socioeconomic status. A 2020 study in the Journal of Vascular Surgery found Black Americans are up to four times more likely to undergo amputation than white Americans with the same disease severity.
Empowering Patients: Resources That Save Limbs and Lives
The statistics above along with Nancy’s journey demonstrate the critical importance of patient advocacy and accessing specialized care. For anyone facing PAD symptoms or an amputation recommendation, these resources can be lifesaving:
Always seek a second opinion from a PAD specialist before accepting an amputation recommendation. Use the Global PAD Association’s doctor finder at TheWayToMyHeart.org/find-a-doctor to locate experienced specialists in your area.
Call the Leg Saver Hotline at 1-833-PAD-LEGS if you’re facing an amputation recommendation or struggling to get proper diagnosis and treatment for symptoms like leg pain, non-healing wounds, or discoloration.
Join support communities where you can learn from others facing similar challenges. The main PAD support group is accessible at padsupportgroup.org, and the walking support group at walkingsupportgroup.com.
Participate in structured walking programs designed specifically for PAD patients. The Global PAD Association offers a free walking program you can join by clicking on this link.
For smokers with PAD, cessation is critical. Rebecca now runs a smoking cessation program alongside PAD Warrior Task Force Chairman Douglas Salisbury every Monday night. Sign up by emailing info@padhelp.org.
The Path Forward: From Patient to Advocate
Today, Nancy isn’t just surviving—she’s thriving. No longer dependent on mobility aids, she’s active and independent. And Rebecca has transformed her family’s harrowing experience into purpose, helping others navigate the complex world of PAD treatment through the Global PAD Association’s Network at PADsupportgroup.org and by volunteering to speak alongside her daughter Becca at industry educational events such as with medical device company BD.
Their story reminds us that medical opinions, even delivered with certainty, aren’t always final. As Dr. Minkus emphasized, “We want to make sure that everyone knows about what we’re doing so they can come to us first and we can give it the best possible chance… before we take them to the ultimate end, which is losing part of their limb.”
For Nancy, the journey from near-amputation to running down store aisles represents more than personal triumph—it stands as testimony to what’s possible when patients refuse to accept limb loss as inevitable and connect with specialists dedicated to limb preservation.
As she puts it simply: “I just went to one of the big department stores. And I actually ran down the aisles… I caught myself running full speed.”
Disclaimer: Individual results may vary. Always consult with your healthcare team before acting on any advice offered here. Do not make medical decisions without your physician’s guidance.
References:
Creager, M. A., & Loscalzo, J. (2021). Vascular Medicine: A Companion to Braunwald’s Heart Disease. Elsevier Health Sciences.
Krishnan, S., et al. (2019). “Racial Disparities in the Incidence of Primary Total Knee Arthroplasty: A State-Level Analysis of the National Inpatient Sample.” Journal of Bone and Joint Surgery, 101(14), 1265-1272.
Suckow, B. D., et al. (2016). “Predicting functional status following amputation after lower extremity bypass.” Annals of Vascular Surgery, 31, 46-53.
Gerhard-Herman, M. D., et al. (2017). “2016 AHA/ACC Guideline on the Management of Patients With Lower Extremity Peripheral Artery Disease.” Journal of the American College of Cardiology, 69(11), e71-e126.
McDermott, M. M., et al. (2021). “Home-Based Walking Exercise Intervention in Peripheral Artery Disease: A Randomized Clinical Trial.” JAMA, 325(13), 1266-1276.
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