Patient perspective: Peripheral artery disease

INTRODUCTION — This topic was written by an individual patient diagnosed with peripheral artery disease. It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Overview of lower extremity peripheral artery disease".)

●(See "Clinical features and diagnosis of lower extremity peripheral artery disease".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5^th to 6^th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10^th to 12^th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

●(See "Patient education: Peripheral artery disease and claudication (The Basics)".)

●(See "Patient education: Peripheral artery disease and claudication (Beyond the Basics)".)

BACKGROUND — I am a health and physical education teacher as well as an athletic director and coach. I have been active all my life and enjoy hiking and taking pictures of the places I go. So, it was distressing for me to learn I had a condition that could limit my ability to do the things I enjoyed when I was diagnosed with peripheral artery disease (PAD) in December 2009. PAD is the narrowing of the arteries due to atherosclerosis. Atherosclerosis is the same condition that causes heart attacks and strokes.

Clinical signs and symptoms — The most common symptom of PAD is discomfort in the legs with exertion, which is resolved by resting the legs. This is called intermittent claudication.

I first noticed pain when hiking. The pain was located in my right calf, but I just assumed it was soreness from the exercise. I would rest, and after 10 to 15 minutes, the pain went away. I could then get going again. I did notice that the distance I could walk before calf pain occurred was getting to be a little less over several years, and hiking up hills was getting more difficult.

It wasn't until my daughter noticed that the bottom of the pinky toe on my right foot was purple that I realized something more was wrong. I've had type I diabetes since I was 18, so I know how important it is to take care of my feet and to wear good shoes. However, I wouldn't routinely look at my feet, and it would be hard for me to see the bottoms anyway. As far as I knew, I didn't have any neuropathy at the time, but maybe I was starting to, because I didn't feel any pain.

I went to see my primary care doctor, who looked at my foot and said I had a vascular problem. My doctor didn't say anything else. Because of the appearance of my foot, my primary care doctor said I should see a vascular surgeon. So, I did a search on the internet and found someone at a nearby major medical center.

DIAGNOSIS AND TREATMENT — The vascular surgeon examined me and did some vascular tests. One of the tests used blood pressure cuffs and a Doppler device to measure the pressure along the length of both legs. The other test was an ultrasound that looked at my blood vessels. The tests found a blockage in the arteries of my right leg.

It was then that I was diagnosed with PAD, which was scary because I had never heard of this disease before. I tried to gain understanding, but there wasn't a lot of time for conversation because they said I needed to have an emergency procedure to get the blood flowing again, or I was going to lose my toe.

While the procedure was explained to me, it was not done so in a way that I could understand. I called my brother, who is a medical professional, and he described the procedure in a way I could comprehend. I felt rushed without a full understanding of PAD or what the vascular surgeon was going to do.

My first procedure — In that first procedure done in 2009, they put a stent in the main vessel of my right thigh, the superficial femoral artery (SFA), to open a high-grade narrowing or stenosis. The procedure was a success, and I regained 100 percent blood flow in my right leg. My toe regained color and didn't need any other treatment.

The health care team did not provide any other options for my treatment. After the procedure, they did not take the time to ensure I comprehended my diagnosis, what was done during the procedure, or how I could keep my condition from getting worse.

However, after the procedure, they put me on some medications (antiplatelet therapy), and I saw my vascular surgeon every six months. Occasionally, I would have a repeat ultrasound.

Bypass surgery — About six years after my first procedure, I started having pain again, so my doctors ordered vascular tests, which showed that the stent that was put in my right leg was blocked off.

After considering all the options, which now included a bypass procedure, I had a right femoral to above knee popliteal artery bypass using a graft material called polytetrafluoroethylene (PTFE).

The graft has been working fine ever since. I'm still taking antiplatelet medications.

UNDERSTANDING PAD — I had to take the initiative and do my own research to fully understand PAD. I don't know why the vascular team who diagnosed me and performed my surgery couldn't help me more in this regard. The words they used were all so new to me, like a whole new language. In my early communications at the time of my diagnosis, I relied on my brother to help me understand what was being said.

Educating myself — Later, I got online and found Vascular Cures, which was instrumental in my understanding of the disease and how to manage it. Vascular Cures is an organization founded by vascular surgeons to help patients and other doctors understand vascular diseases.

PAD risk and progression — There are several things I wish I knew before I was diagnosed with PAD. In general, I wish that I knew what PAD and its risk factors were prior to my diagnosis so I could have taken steps to prevent it. I wish I had known about the effects of smoking on circulation. I have smoked since I was a teenager. Of course, I knew that smoking can cause problems like lung cancer, but I did not know how smoking can contribute to PAD.

I also have high blood pressure, which is treated with medications, and as I mentioned above, I have type I diabetes. I use an insulin pump to regulate my sugar. I know now that these are risk factors for PAD, and the combination of these makes my risk even higher.

While I self-identify as a Black woman, I am Native American, a fact that I only learned later in life with genetic testing that showed I belonged to the Pamunkey tribe. I also learned that PAD can be more severe in Native Americans.

Even though it was my right leg that was originally the problem, now that the blood flow is better on that side, I've noticed that I get pain in my left calf after exertion. I was told that the blood flow to my left leg is 70 percent of normal (corresponds to ankle-brachial index of 0.7). So, I am motivated to keep that from getting any worse.

A couple of years after my leg bypass, I had pain in my chest. There were blockages in the arteries to my heart, called coronary artery disease (CAD), which often occurs in patients with PAD because each disease is caused by atherosclerosis. The cardiologist who took care of me put in four stents. After that, I stopped smoking for good. In addition, I've tried to keep my blood pressure and blood sugar under good control. I stay as active as I can, though it's getting harder.

Misconceptions about PAD — I do not seem to fit the typical profile of a person with PAD. I learned that PAD is mostly seen in much older females. I was diagnosed with PAD when I was 50 years old. The earlier occurrence in me is likely a combination of diabetes and other risk factors like smoking and high blood pressure. I also learned, though, that PAD may be more common in females in Native American populations [1].

When I learned more about PAD risk factors, I discovered that maybe it should have been more obvious to my doctors that I was at risk. The subject of vascular disease was not brought up at my routine medical or podiatry visits even though these risk factors are present in me personally and among other members of my family.

LIVING WITH PAD

Monitoring my condition — Now that I am educated about PAD, I understand how to communicate better with my vascular team, which has also helped me to better coordinate my care.

One of the ways I monitor my condition is by paying attention to pain levels when performing daily tasks. If I am experiencing increased pain, I can email or call my doctors, and they will perform a noninvasive vascular test to measure blood flow and pressure in my legs. It allows us to monitor the disease and catch limited blood flow before it becomes an emergency.

Impact on my life — The impact PAD and coronary artery disease (CAD) have had on my life has been difficult to accept. I am unable to hike now, which is something I enjoyed and miss a lot. Also, I can no longer demonstrate all the activities for my students in the physical education class. My health care team has not provided guidance on how to increase my mobility, but I have found walking sticks to be the most helpful. I do not use them daily, but they are useful when I need an aide.

I am constantly pushing my mind to be positive and to keep moving forward.

The financial impact is another negative effect PAD and CAD have had on my life. I wish the doctors had talked to me about my insurance coverage and how much my procedures would cost. I have not communicated the financial strain to my providers or to my insurance company.

Support — Support organizations such as Vascular Cures and others (eg, Society for Vascular Surgery, American Heart Association) have been impactful. There, I have support that is encouraging and positive. In a perfect world, I would get this compassion and encouragement from my doctors. Advice I would give to those who are newly diagnosed with PAD is to stay active, be encouraged, eat well, and seek resource groups if you are not satisfied with your level of understanding.