If there’s one thing we’ve learned from hosting the PAD Leg Saver Hotline, it’s that behind every diagnosis of Peripheral Artery Disease lies a deeply human story of adaptation, perseverance, and sometimes, profound struggle. Our second episode brought together an extraordinary group of PAD warriors who openly shared their journeys – from the practical challenges of daily movement to the emotional toll of chronic pain.
“This is a place where you never know what you’re going to hear. It’s just about the patient experience,” I explained at the start of our broadcast. And what an experience it was.
The PAD Leg Saver Hotline exists precisely for this reason – to create a space where the lived reality of peripheral artery disease can be discussed honestly. That poor circulation, mainly in the legs, causes leg pain, cramps, and neuropathy that can feel, as I described it, “pretty wretched.”
Douglas Salisbury, our PAD Warrior Task Force Chairman and my co-host, put it perfectly: “Our experiences are all a little bit different, but they’re in some ways the same. We all share some of the same experiences, don’t we? In dealing with doctors, getting second opinions, walking, eating right, not smoking.”
The Disconnect Between Doctors and Patients
One of the most powerful themes that emerged was the disconnect between what doctors understand about PAD and what patients actually experience.
Alan, one of our regular participants, shared a heartbreaking story about being caught between his family doctor and pain clinic, with neither willing to take responsibility for managing his debilitating pain. “When he told me he couldn’t do it, I literally started crying. I was absolutely devastated,” Alan revealed. “I felt like our health system was failing me.”
This sentiment was echoed by Douglas, who asked a question that hung in the air: “How often do doctors think about an amputation and what that would create in a patient’s life?”
Eddie, a newer member to our community, described how physicians had placed stents in his legs but provided minimal guidance on lifestyle changes or follow-up care. “He just told me that I had PAD but never pushed me into anything or tried to help me,” Eddie recalled. “He just gave me a prescription and told me to take this, and I never heard from him again.”
Walking as Medicine: The Science Behind the Steps
Throughout our discussion, we continually returned to the critical importance of walking – not just any walking, but walking in a specific way to stimulate the growth of collateral blood vessels.
I emphasized that while counting steps is good, understanding claudication time is essential: “It’s not about steps throughout the day, although that’s really great. You’ve got to keep moving – move it or lose it. But it’s about how do you maximize collateral vessel growth?”
For those new to PAD management, claudication time refers to the period from when pain begins to when it becomes so intense (level 7-8) that you must stop. The key is pushing through that initial discomfort.
“That claudication time is when our bodies will say, ‘Look, I have a problem here. I have a blockage. I need to create a collateral around this blockage so I can stay alive,’” Douglas explained.
Our community member Dawn’s story serves as a powerful reminder of what’s at stake. “If a doctor had only told me how to walk effectively, I might still have my leg today,” she had told us previously. Her doctor simply advised her to walk at a comfortable pace and stop when claudication began – missing the crucial advice about pushing through that pain to stimulate collateral growth.
Beyond Walking: The PAD Lifestyle Toolkit
Our conversation also highlighted the many other tools PAD patients are using to improve their circulation and overall health.
Kevin Morgan, author of “How to Fight the Crippling Pain of Peripheral Artery Disease,” joins us weekly to share exercise techniques. Douglas laughingly described doing “toe yoga” in his cardiologist’s waiting room: “I’m pretty sure they were thinking I belonged on the sixth floor, the psychiatric unit.”
Imelda shared valuable nutritional insights she’d discovered: “Dr. William Lee, who was a vascular doctor… said there were two things that were absolutely very good for your little tiny arterioles in your toes. One was beets and one was pomegranate juice.”
The discussion also addressed smoking cessation, with Douglas noting the counterproductive effects of smoking for PAD patients: “Every drag I took takes away one of those steps… I walk 500 steps, I feel good about myself. I go back home, light a cigarette. In reality, I’ve only walked 222 steps because every puff took away and added plaque.”
The Emotional Weight of PAD
Perhaps the most poignant moments came when participants opened up about the emotional burden of living with PAD.
“I was having an epic moment,” Douglas shared. “How many of us feel sometimes we’re stuck in the middle somewhere? This is not what we thought life would look like at this time of our life.”
Alan echoed this sentiment with raw honesty when he shared his daughter’s observation: “Dad, you’re not living, you’re just existing.” He revealed he had spent 80% of his time in the last three months in bed, resulting in significant muscle loss in his legs.
Eddie, at 70 years old, spoke about the frustration of limitation: “I almost feel worthless if I can’t get something done. And that’s the part that emotionally hurts me the most.”
Becoming Your Own Advocate
A recurring theme throughout our discussion was the importance of patient advocacy and education.
“Learning to become my best advocate means learning to ask the right questions when I’m in front of the doctor, not while I’m driving home,” Douglas emphasized.
The PAD Leg Saver Hotline (1-833-PAD-LEGS) serves as a crucial resource, connecting patients with the information they need to advocate effectively for themselves. As I mentioned, “We can personalize questions for you if you call our Leg Saver Hotline.”
Even doctors recognize the value of our educational resources. Alan shared that his vascular surgeon actually recommended our platforms: “I asked him, ‘Well, how do I learn about that?’ And he told me to go to Kim’s website and Facebook site.”
The Roller Coaster Ride of PAD
Douglas eloquently described living with PAD as a roller coaster ride – physically and emotionally. “That roller coaster ride that we’re on sometimes between having the good days, the bad days, being able to walk 100 steps one day and three steps the next day.”
This unpredictability affects not just patients but their entire support systems. As Douglas noted, “How does that affect your family, your friends, your yard? Your yard needs to be mowed, but I can’t. I can’t mow it because I can’t get to the end of the driveway now.”
Moving Forward: One Step at a Time
Despite the challenges, our community remains resilient and forward-looking. Douglas’s mantra resonated with everyone: “One extra step. That’s all I asked for. One extra step. And that’s what it takes – that one extra step every day to keep moving forward.”
The importance of community support cannot be overstated. Whether it’s through our weekly meetings, online support groups, or the PAD Leg Saver Hotline, patients find strength in shared experiences.
As we wrapped up our session, I reminded everyone of our ultimate goal: “Help raise awareness for PAD and the lived experience of patients with PAD and help us to create the change that we all want to see, which is improved care across the globe.”
If you or someone you know is struggling with PAD, remember you’re not alone. Call our Leg Saver hotline at 1-833-PAD-LEGS or visit us at PADhelp.org. Join us every Wednesday for our live broadcast where we continue to share experiences, learn from each other, and build a community of support.
For more information on walking effectively with PAD, join our weekly walking meetings and check out our YouTube channel at youtube.com/@thewaytoheartmyheart for instructional videos and additional resources.