There’s something magical that happens every Wednesday on our PAD Leg Saver Hotline podcast. It’s not just people calling in to share their experiences with peripheral artery disease—it’s friends checking in on each other, celebrating birthdays, offering advice, and reminding each other that none of us walks this path alone.
The Daily Mountain We All Climb
We started by discussing Dr. Kevin Morgan’s powerful message from our earlier Collateral Nation podcast about the emotional mountain of PAD.
“You need to let go of yesterday,” Douglas reflected. “Whatever you used to be able to do, whatever life was like yesterday, you need to let go of it because if you were doing great, what you thought were greater things yesterday than you’re able to do today, well, that’s not going to help your mindset going forward.”
Douglas continued, “Think about what we all go through on a normal day. And then you add PAD on top of that. What comes with PAD, the rollercoaster ride of emotions that you feel, doctor visits, hospital bills, the pain, and all the things that come with living with a disease.”
This set the tone for our conversation—acknowledging the daily challenges while focusing on how to live fully despite them.
Life Beyond Limitations: Celebrating Imelda’s Birthday
The conversation naturally shifted to Imelda, who had just celebrated her birthday. Rather than dwelling on limitations, she shared how she was still enjoying life’s pleasures.
“I went to the Old Globe Theater in San Diego,” Imelda shared.
“Oh, fantastic. Tell us about that,” I encouraged.
“We had a really goofy play. It was one of Shakespeare’s earliest plays. It’s completely a spoof. It was called Comedy of Errors. It’s about twins who are separated at birth.”
“How fun,” I responded. “I’m going to Into the Woods this weekend, actually, at the Shakespeare Festival in Ashland, Oregon.”
When I mentioned how wonderful it was that she wasn’t letting PAD limit her activities, Imelda was refreshingly honest: “Well, except my husband had to push me in the wheelchair.”
“Which is fine. You’re adapting, right? And that’s what we do every day,” I reminded her.
This is the reality for many of us—finding ways to enjoy life while accommodating our condition. It’s not about pretending PAD doesn’t affect us; it’s about refusing to let it define us.
Thomas’s Journey: The Insurance Battle and Medical Mysteries
Thomas joined us from the studio, and his story highlighted the systemic challenges many PAD patients face. Despite having a world-renowned limb salvage specialist, he’s been fighting an uphill battle with his insurance company.
“They have some random doctor that is hired by the insurance company to deny, deny, deny, who doesn’t know his medical history, doesn’t know that he’s not a surgical candidate,” I explained, frustration evident in my voice. “They’re saying, ‘Nope, we don’t think that wires and balloons are going to work for him. So you just need to cut him open from the shoulder clear to the leg and he’ll be better off.’”
Thomas responded with understandable concern: “So what you’re saying is I may get an insurance adjuster somewhere who’s a gynecologist or ear, nose looking at my thing that goes in for my vascular surgeon and say, ‘Well, no, we don’t need to do that.’”
“Yeah,” I confirmed. “We actually did have a gynecologist first. There was a patient in Texas and I just wrote about this, but there was a gynecologist that did a peer-to-peer review of a case and was denying care for a patient that needed his limb saved.”
Despite these frustrations, Thomas has found ways to maintain his quality of life and mental health.
“When I go to the gym, I switch off to my PAD completely,” he shared. “If I go to the gym and I’m working out, I forget about what I can’t do with my legs. I can’t do the treadmill—I almost went flying across the gym when I did go on it. But I do the calf extensions, 120 pounds, push them with my legs. But when it comes to walking, it’s an absolute nightmare, especially when I walk on grass.”
Thomas then revealed a shocking discovery about his previous bypass surgery that has complicated his care:
“They said they checked all this, they scanned me, see if they’d left anything inside me. Said, nope, there was nothing there. Well, two and a half, three years later, a scan shows they left a clip on my artery.”
“What?” I exclaimed.
“Yeah,” Thomas continued. “Every time I would go, Dr. Raleigh, other surgeons, they say, ‘Look, you don’t have a bypass.’ I say, ‘I do have a bypass.’ Well, CT shows I got a clip on it. So that’s restricting blood flow right where all the blood flow is, really, really slow.”
This revelation led to a broader discussion about medical errors and the importance of follow-up imaging. Thomas’s experience resonated with many in our group who have had to advocate persistently for proper care.
Finding Meaning: Dawn’s Perspective on Living with PAD
Thomas’s story about staying active despite PAD naturally led to Dawn sharing her own philosophy about finding purpose beyond her diagnosis. When others assume her children are her primary motivation for staying strong, she sees something deeper:
“Everybody says to me, ‘The difference between you is why you’re so strong is because you have kids,’” Dawn explained. “And I came to realize the other day, I really don’t think it’s because of my kids. Yes, they’re one reason why I keep going, of course.”
“But the other day, I was driving down the street by myself, and I looked outside, and the sun was setting. And it was just gorgeous. It was bright, bright, bright red. And all the colors around it were just beautiful. It looked like a picture. And I was just so appreciative to even just be able to wake up every day, to be able to see that. I think that’s what keeps me going.”
Her words touched everyone on the call. Douglas responded with genuine admiration: “I follow Dawn. And every time I see her pop up, it’s like my first thought is, ‘Oh, Lord, where is she today? What is she doing today?’ And I’m jealous. She’s everywhere. Where is she today now? Holy cow, why can’t I go all these wonderful places?”
Dawn laughed at this, and the moment highlighted how our community celebrates each other’s joys and adventures. While Thomas finds solace in the gym and Dawn in nature’s beauty, each person discovers their own way to transcend the limitations of PAD.
When Complications Multiply: Beth’s Cardiac Journey
The conversation then turned to Beth, who reminded us how PAD rarely travels alone. Many patients manage multiple serious conditions simultaneously, and Beth shared her recent cardiac emergency:
“I had to see cardiology today,” she began. “On the 19th, I had an episode. And they had to jumpstart my heart.”
“Oh, no,” several of us responded with concern.
“I have tachycardia. And I had an episode where my heart went up to 191 beats a minute in the ambulance here at the house. It was 181 beats,” Beth continued. “They gave me this medication through an IV in the ambulance. And he says, ‘Beth, I’m going to give you this medication. And when I give it to you, it’s going to feel like somebody literally punched you in the chest.’ He wasn’t kidding.”
Beth described the experience vividly: “I was kind of leaned back on the cart and I just literally come up—excuse my language but I’m like, ‘Son of a bitch.’ Exactly what I said.”
“It was like a shock to my heart is what they did was shocked my heart back into rhythm,” she explained.
Beth’s story sparked a concerned discussion about her treatment plan, including wearing a heart monitor for two weeks and possibly needing a cardiac ablation. Thomas and Dawn both asked questions and offered support, showing how our community rallies around each other during health crises.
“Now I go to the cardiologist today and they I’m on a heart monitor now and I have to wear it for two weeks,” Beth continued. “If I have any more episodes they’re going to have to put me in for an ablation.”
This led to a broader conversation about managing multiple health conditions—something nearly everyone in our group faces.
The Misdiagnosis Crisis We’re Fighting
Beth’s cardiac issues naturally led to her sharing her PAD diagnosis story, highlighting a problem we see repeatedly:
“I was diagnosed in November of 2021 and I had symptoms for four plus years before the PAD was actually found because they were treating me for peripheral neuropathy beforehand,” she revealed.
This struck a chord with Douglas, who added: “I had a full-blown heart attack. Stents put in on two occasions and nobody ever told me, let’s check your legs. Never. My cramps were because I was not drinking enough water, so I was dehydrated, and my cold feet was because I was anemic.”
“Three in five people who suffer a heart attack have PAD,” I emphasized. “That’s the first thing I tell anybody. You ever had a heart attack, have your legs checked. You have bad legs, check your heart because they go hand in hand.”
This statistic resonated with everyone. Through our hotline, we’ve found that 35% of patients were initially told they needed amputations solely because of diabetes. When we helped them get proper vascular exams, every single one was confirmed to have PAD—and in most cases, we saved their leg.
Learning from Experience: Douglas’s Story
Douglas’s mention of his heart attack led him to share his own journey with a failed axillary bifemoral bypass—a procedure he now believes might have been unnecessary if he’d found the right doctor earlier.
“Right above my right chest, down the middle of my stomach, into both legs, I want you to take a garden hose and pinch it off at the top. Pinch it off at the bottom and fill it with water and stick it inside of you. Right underneath the skin. That is what mine is,” he described.
“It goes right above my right boobie, down my stomach, across the top of my groin, into both legs. And it is a solid piece of tube that is 100% blocked and it’s like a water hose that’s got full of water in it. I can’t wear blue jeans. I can’t wear certain things because it pokes me. I can’t drive long distances because when I sit down, it pokes me. I feel it every day, all day long, 24 hours a day.”
Despite this constant physical reminder, Douglas has adapted: “I’ve learned kind of how to live with it now and work around it. And I wear a lot of cover overalls now in the right pair of pants that doesn’t bind it or pitch it.”
His experience with unnecessary surgery resonated with Thomas’s current insurance battle, creating a moment of connection between their stories. “If I knew now what I knew then, I would have said, time out. Hold on. Let me get another opinion,” Douglas reflected. “That doctor did not believe in doing anything else. That’s only what he knew.”
After connecting with Dr. Walker through our network, Douglas found there were alternatives his original doctor never considered. “The doctor was able to bypass those bypasses. He was able to go in and restore blood flow in the regular artery.”
Becoming Your Own Advocate: Strategies That Work
These stories of misdiagnosis and inappropriate treatments led naturally to a discussion about patient advocacy—how to speak up effectively in medical settings.
“Do you ever feel nervous about asking your doctor things?” I asked the group. “I feel sometimes nervous and embarrassed about asking my doctor questions. And you know what? I think we all do. Even I do.”
“I think we all do,” Dawn agreed, and Beth nodded.
I shared my strategy: “My suggestion is I always have an advocate with me. I always have someone else that is going to my appointments with me, even if it’s just via phone. We sit before I go in and go over what I want to cover, because when you get there, your mind goes blank from stress.”
Dawn’s approach complemented mine: “I make a list now if things come up. Usually I try to bring a list now because when you get in there, you’re like, ‘All right, I got to ask him this, this, this, and this.’ Well, then the doctor comes in. ‘Hi, how you doing? Blah, blah, blah.’ And then it goes off on a tangent because he’s in a hurry and it blows your mind what you needed to ask. I break out my list and I tell them, ‘Hey, wait a minute, we got to slow down for a minute and we need to go over these things.’”
Heinz, who joined us later, reinforced this approach: “I always write down my questions, as Dawn stated earlier, and my cardiologist answers all of them. And I ask tough ones, too.”
Imelda raised an excellent question that many patients with multiple conditions face: “If you have several diagnoses, how do you know which doctor to ask which questions?”
“The answer is to go to your primary care doctor and say, I have X, Y, and Z diagnosis. Which doctor am I supposed to ask about which diagnosis,” I advised. “Your primary care doctor is supposed to be the gatekeeper. They’re supposed to hold the fort together and help you manage everything.”
The Power of Community
What struck me most throughout our conversation was how each person’s story connected to the others, creating a tapestry of shared experience. Thomas’s gym routine inspired Dawn to share her perspective. Beth’s cardiac challenges led to a discussion of misdiagnosis that resonated with Douglas’s experience. Each story built upon the last, creating a sense of collective wisdom.
“Look at where we are right now in this little group,” Douglas observed. “We got one side of the country to the other side of the country to the great state of Texas. Look how easy this is for us to get together and share and laugh and tell stories and share our experiences.”
As our conversation wound down, we had wandered from PAD to Shakespeare plays, from heart conditions to Amish cooking, from insurance battles to shoe-fly pie. This natural flow from medical concerns to everyday joys is what makes our community so special—we’re not just patients discussing a disease; we’re friends sharing our lives.
This is why I founded the Global PAD Association—because living with PAD can be isolating, and no one should face this journey alone. Through our hotline, we’ve saved over 1,000 limbs, but perhaps more importantly, we’ve created a community where people understand each other without explanation.
If you’re struggling with PAD, call our Leg Saver Hotline at 1-833-PAD-LEGS (1-833-723-5353). Join our Wednesday conversations. You don’t have to walk this path alone.
DISCLAIMER: The patient journeys and experiences shared in this article are their own and not necessarily representative of all patients with PAD. Medical experiences vary widely among individuals. Always consult with your healthcare provider regarding your specific situation and treatment options. The Global PAD Association does not provide medical advice, diagnosis, or treatment.