Peripheral artery disease, peripheral artery disease support
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Save My Piggies | Ep. 3 | Walking As Medicine

"Steve" was facing a potential bypass procedure when a second opinion led him to a successful conservative approach.

· Save My Piggies,Patient Stories

In Episode 3 of "Save My Piggies." Dr. Phillips talks to Steve, who has been dealing with peripheral arterial disease for quite some time, about the cornerstone of treatment, which is a walking program that's led him to avoid any surgical treatment for more than a decade.

Dr. John Phillips: When did your PAD journey begin?

Steve: My PAD story really started about 10 years ago. I was having severe pain in my lower calves, especially in airports when I was pulling a bag around, and walking. I really would start having pain after just walking a couple of blocks in my lower calves. And so I got a referral into a vascular surgeon, in this case, at Kaiser, where my wife works. And we did an ankle-brachial test.

So you knew that this was a vascular issue? How did you know that?

I really didn't. I got referred by my primary care physician. And I was experiencing pain at night, too, in my lower calf and foot, you know, that would wake me up. So I was having leg pain at night, too. And that's really what eventually prompted me to try to figure out what was going on. So, the doctor performed a CT angiogram of my lower extremities. And my wife actually was a CT tech as well as had managed x-ray departments. And so she had what she felt was the best doctor review my situation. They conferred with the vascular surgeon there, and we had a session with him. My wife was attending.

And he suggested, "I could do a bypass to alleviate the pain essentially."

To which I responded, "Well, you know, how long will this last? If I do this, how long will this last?"

And he said, "Well, anywhere from three to five years."

I didn't really like that answer, and I asked, "What happens after that?

And he said, "Well, you'll probably have to have another surgery."

Since it was invasive, I also had some other medical friends, doctors who got me a referral into Cedars-Sinai for a second opinion, where I met a doctor, Willis Wagner, who headed up the Vascular department over there at that time. And he took a look at, all my tests and x-rays and he shared it with the rest of the surgeons there in his group.

After review, he said, "You know, Steve, I really can't improve the quality of life if we do a bypass for you. I really can't improve what's going on because your right artery in your leg is totally occluded." And he said, "What you can do is start walking and increase your walking distance. And that will hopefully form collaterals that will bring the blood flow back to both of your legs over time."

And so I started starting doing that and learned to walk through the pain. Fast forward 10 years later, I'm still doing that.

You bring up an interesting point. You got a second opinion pretty quickly. There are many patients out there who take what their physician tells them as gospel, not knowing other options might be available. What kind of advice would you give patients that aren't as aggressive as you were, that are afraid to ask for a second opinion? It's okay to get a second opinion.

Right. I think when you're dealing with your body, you only have one body. So, it's probably the most important thing you have. So I have discussions with doctors a long time ago that are friends of mine.

They all have suggested to me, "You want to do everything you can not to have any form of surgery if you can avoid it."

If it's something that you have to have surgery for, you do. My advice to anybody diagnosed with PAD, before any form of surgery is recommended to be done, is that they need to seek a second opinion. The doctor's visit cost is not that great. And once they've gotten their tests, they have their test in hand, and they're able to transfer those and show those to whoever they're getting their second opinion from. I strongly support a second opinion. And, you know, unfortunately, I belong to some of the support groups on Facebook, and the stories there can be terrible.

You bring up a great point. We know that when we pivot from that conservative treatment plan to the formal angiogram, looking at the blood vessels with the catheter, and possibly an intervention that starts a clock, meaning, yes, I can put a stent in, we can do a bypass. But it's unlikely that this is going to last you the rest of your life. So you're going to probably need another procedure. And then the time between the first and second procedure and the second and third is going to be shorter. And, you know, sometimes we make folks worse.

So you're right on. You have to be very cautious of a physician that's recommending right out-of-the-gate surgery or stents and not trying a conservative program, which most insurance companies reimburse. And just like cardiac rehab, you can do PAD rehab.

So tell me a little bit about how you tackled the notion of, "Okay, I'm going to walk." I imagine you didn't go out walking multiple miles a day. It took time to build up. And how'd you gone about doing that? And what'd you say to yourself when you felt like quitting? Because I imagine there were probably days where you just were like, "This isn't working."

Well, I'll admit to you, I also had a partner in my walks. I still do my dogs. But, you know, I was also fortunate because I'm a tennis player. And so I was already physically active. Yes, I was in pain on the courts, but I still got out there -- and still do. I'm not what I used to be on the court, but I've seen improvement from the start of this PAD journey and conservative treatment program thanks to the additional walking. Even today, I still do a walk and stop, walk and stop and walk again. I'm not doing the distance I built up to maybe six years ago in one walk, but I do two walks on days that I don't play tennis for about 40 minutes each and I keep walking through the pain.

What do you say to those who are reading this who say, "I can't walk." Because all patients with claudication, which is what you're describing, that pain when you walk in the calves and the thighs that gets better when you rest, we recommend a walking program and then medications to help. Pletal (cilostazol) is one of them. Obviously, we recommend making sure that they're on potentially aspirin, medicine for cholesterol, etc. But I get some that try, and they say, "I just can't do it." As Americans and those in Western civilization, we want that quick fix, so to speak. But you knew that that quick fix was not going to be a long-term fix.

I guess what I recommend to them is to join one of Kym's groups on Facebook and see, how this disease can progress. And, that to me is really the eye-opener. And so contra to that, understand that, of course, one never knows when I might start having more severe pain at night. I still wake up some nights with pain in my lower foot. If it wakes me up, and I have to get up, and I walk, to the restroom, and then come back to bed, and it goes away.

But you have all your piggies. You've got all 10?

I have everything. Everything is there. I get a red foot in the mornings. And my right foot is red when I get into the shower. But after I'm on it for a while, it whitens up. So, I can say that to anybody that has been diagnosed and is not in tremendous pain all the time including at rest and I'm not saying somebody that has got diabetic ulcers and all the other things that can happen and the severities. Still, if somebody has been diagnosed with it, even if one of the arteries is completely occluded, you can implement a walking regimen and stick with it and persevere. And, I'm proof of that. Now, I've also learned that genetically, not all people can grow collaterals. I learned that along the way from a vascular surgeon that I respect that told me that.

Some can grow more than others. And that's an important discussion each patient should have with their own healthcare provider -- what is my ability to grow collaterals? Anything hindering my ability? Still, as you discussed, walking is so important for all if they can. And you are a patient advocate through another nonprofit, and you share your walking program, including right down to the right socks and the right shoes. Can you share a little bit of that with us?

I've found that there are certain shoes that I couldn't walk in. I mean, I really couldn't get any distance at all. So I was fortunate enough to while I was up in Sausalito, and I was in an athletic shoe store. And I met the owner there, and I told him, I was having problems with the shoes that I was wearing. And they were running shoes. He told me, "Well, you've got the wrong shoe. You need to be wearing Asics for the support, and you probably should have orthotics, too." I also knew, from playing tennis, my Thurlos tennis socks had a tremendous amount of cushion. I also learned that a half sock was better than a full sock because it blocked my circulation to my feet. So I started wearing the half socks. The combination of the cushioning of the shock, the orthotics, and then the Asics Gel-Kayano's...When you put all of that together, I've got a tremendously cushioned shoe. It makes all the difference in the world.

So it's a matter of, to some degree, trying a different shoe, trying a different sock, as opposed to, "Hey, I've had these tennis shoes for the last 15 years. I'm trying to walk, and I can't walk." I mean, that's quite simple.

Yeah, it is. And I think too it's, again, just like I was fortunate enough to find the right vascular surgeon, I was fortunate enough to find an expert in shoes in an athletic shoe store that really recommended not from an income point of view of what the shoe costs but the right shoe for me to be wearing. And I'm actually right now, as Kym with The Way To My Heart patient advocacy nonprofit Facebook Group. I'm conversing with somebody in England taking them through this exercise to see how she does with the sock, the shoe, so maybe I'll start to have a couple more test cases and then start recommending it because it truly worked for me.

If you could go back to maybe before you even had the PAD, your younger self, would you change anything concerning how you got to where you were? I mean, did you have any bad habits that you want that you probably shouldn't have done that maybe led to the PAD?

No. Unfortunately, I was a smoker. And I started smoking when I was about 18. I got hooked. And I tried very hard to quit because of the nicotine addiction and, of course, the psychology of it. I did end up quitting in my 30's So, it was possibly some of that caused my PAD, but also some of it may be hereditary, I think, as my dad had trouble walking at my age.

How often do you get evaluated for progression of the PAD?

I was being evaluated every year. But my physician has now said, "Come back if you're having pain." He's not doing the annual tests right now because I think he knows that I'm managing it. For example, the pain that I am experiencing every once in a while in my foot, if that starts to become a regular thing every night, then we have to look at it again.

I'm fortunate enough to continue my routine. I'm also fortunate enough that I've had a physical trainer who's unbelievable for the last six years. And he comes to the house for a half-hour, three days a week, the days that I don't play tennis. A lot of that is stretching and balance as well as core work. But I think the stretching also definitely helps with this... It's very painful, it can be very painful, but I think it also helps circulation.

We're obviously stuck in this pandemic. And hopefully, we're going to be out of it soon. But the home gyms that are out there and there's stuff online that people can find for stretching, core work, or minimal, you know, aerobic activity within the house. But we do personally recommend, you know, walking at least for 20 to 30 minutes, 4 to 5 times a week, just enough to... And I tell my patients the same thing, "You walk until it hurts, and then you stop." And I often tell them, too, to keep a log about how long, you know, their distance. So they see that they're improving, and that helps motivate them as well. What do you do to motivate yourself?

I see my steps. I have steps on my iPhone. And also I think that really the motivation for me is... My wife is always telling me she's not going to be pushing me around in a wheelchair. Also, the motivation for me is to avoid having to have surgery for as long as I'm able.

What do you say to that patient who thinks they may have peripheral arterial disease or is avoiding seeking medical attention? What do you tell them to go in and find somebody to get them evaluated, get them screened, get them tested?

As a patient advocate for Vascular Cures, I think one of the things the more and more I've become informed in PAD and this disease, the more important I believe, the earlier screening, the better. And I believe so much in Kym with The Way To My Heart lately as she has been quoted as saying that every primary care physician should be checking, as part of the annual checkup, the pulse in your lower extremities.

Somebody had asked me, what do you tell a heart disease patient about their peripheral arterial disease? Because there's a lotta overlap. And about 15% of people have both. And the same thing, I said, "Make sure whoever is examining you check your pulses."

Yes, I think early screening is important. I think the earliest that you can screen for it, the better off you are. And the only testament to that again is joining one of Kym's PAD Facebook groups and understanding how this disease can progress if it's unchecked, it's so eye-opening.