Educate, Advocate & Change Your Ways: Living with PAD
AT AGE 53, Elizabeth Beard thought she was just seriously out of shape — after all it had been years since she’d exercised, not to mention 35 years of smoking.
Having recently remarried and moved from rural Texas, she was making her first visit to a new primary care doctor. “Knowing the importance of preventative care and remaining compliant on all of my medications, finding a new primary care physician was a priority for me when moving to a new city,” she said. At the end of her new-patient visit, the doctor asked if she had any other concerns. “I told him that I had quit smoking a few months before and was attempting a walking program, but every time I walked, my feet were going numb and my calves were seizing up. I could walk for a few minutes then would have to stop and wait for the pain to ease and then start again.”
He asked her to take off her shoes and listened to her feet with a stethoscope and searched for a pulse with his fingers. He told her he could barely feel a pulse in either foot. “He said he thought that due to my history of smoking and my extensive family history of heart disease that I was probably experiencing intermittent claudication,” she said.
This was the first of several new terms Elizabeth would learn. To be certain that it was intermittent claudication, he sent her for an ankle-brachial index, another new term. “It came back severely abnormal,” she said. Following additional tests and consultations with a surgeon and cardiologist, she learned that her abdominal aorta and both femoral arteries were 80 percent to 90 percent blocked. This is where she learned her diagnosis, another new term, severe peripheral artery disease (PAD). “With such severe blockages, they recommended immediate bi-femoral aortic bypass surgery; otherwise I could lose one or both legs.”
A little anatomy: The aorta is the main artery (about an inch wide) that carries blood away from your heart to the rest of your body. After the blood leaves the heart through the aortic valve, it travels through the aorta, which makes a cane-shaped curve and connects with other major arteries to deliver oxygen-rich blood to the brain, muscles and other cells. In the upper body, it is called the thoracic aorta; below that is the abdominal aorta, which delivers blood to the femoral arteries in each leg.
Of course, the newlyweds were shocked at the diagnosis. Neither had ever heard of any of these maladies before, and the situation was presented as extremely serious. “The surgeon told us that it was a very dangerous operation,” she said. “He asked if we had a will, but we’d only been married four months. It is very hard to discuss end-of-life wishes when you are just beginning a marriage. They wanted to schedule the surgery right away, but I asked for a one-week delay for my oldest son’s wedding.”
Elizabeth has the genes for heart disease. She lost her parents 11 months apart in 2004 and 2005: her father to heart failure and her mother to a hemorrhagic stroke after four years of vascular dementia. Both had undergone open-heart surgery in their younger years, as had her older brother who is now deceased. Her younger brother has undergone two stent operations. One was last year after a near fatal STEMI (heart attack).
Elizabeth had to be tested for coronary artery disease (CAD), which often co-occurs with PAD. If they found CAD, she would have to have a coronary bypass before undergoing the aortobifemoral bypass, which involved both the abdominal aorta and both femoral arteries. Fortunately, she did not have CAD.
“It was a horrendous surgery” she said. “I was cut from my breast bone to my pubic bone plus two incisions at the top of each leg. They literally have to remove your organs and lay them to the side so they can work on your aorta and then place them back. The surgery took approximately seven hours. I have had surgery many times in my life for other conditions, and there is no comparison to the pain of the recovery from this one. If they told me I had to undergo it again, I would more than likely say no or look to other, newer options.”
The vascular surgeon told her and husband, Stephen, that she would be “like new,” but that is not how it turned out. “We assumed I would have no more pain and be able to do what I wanted,” she said. “After the surgery I still had leg pain and then there were additional issues created by the surgery itself due to nerve damage. My cardiologist eventually told me that I would never be much better than before the surgery. The purpose of the surgery, he said, was to save my legs, and quite possibly my life.”
This news devastated her as she contemplated the possibility of living life as an invalid. Her quality of life has been severely affected. She can no longer walk more than short distances nor stand for very long. Stairs are always a challenge. Both heat and cold affect her. “I have had to pass on so many things that before my illness I would have done without thinking,” she said. “I cry many times because it is overwhelming to me. It has taken me a long time to come to grips with the reality of my condition and its limitations.”
But in the four years since her diagnosis and surgery, Elizabeth’s attitude toward her health has completely changed. Though she works from home as before, she makes a point of not being sedentary, and she has continued not to smoke. She bought an activity tracker and every hour gets up from her desk and walks in place for 250 steps — “one song on the playlist.” Her goal is to walk 1.5 hours at least three times a week — broken up into 15- or 30-minute segments. “I purchased my own treadmill after my diagnosis, knowing walking was my treatment. I try to walk 30 minutes before work, 30 minutes at lunch and 30 minutes after work. There are days when I am unable to walk at all because of the pain, but this is my goal. It took me four years to build to that,” she said.
In addition to incorporating activity into her life, Elizabeth has also changed her diet. “That has been a gradual process,” she said. “Little by little I gave up sugar. I rarely eat red meat anymore. Mostly chicken, fish and turkey, low sodium, and lots of vegetables and fruits. We rarely eat out anymore because we made cooking fun. We put on our favorite music; drink some red wine and slice and dice! We’ve learned how to use spices and herbs just by trial and error.” And the results are great: for the first time in 15 years, her cholesterol and blood pressure are normal. “I feel my lifestyle healing me.”
“The biggest lesson I’ve learned is that you have to find what works for you. For instance, portion control was my biggest challenge, so we now only use nine-inch plates,” she said. “I am still overweight, but I try not to stress about it. I didn’t get this way overnight, and I won’t lose it overnight. It’s the effort to change that matters.”
Elizabeth has gotten serious about tracing her heart-disease genealogy. On her father’s side, she has gone back five generations. “With the help of a cousin and using ancestry.com, I found that all of my paternal grandparents died of cardiovascular disease in one form or another,” she said. “I have not started my mom’s yet — but it probably looks similar.”
She cautions that it is not enough to just know your family history. “I knew my family had heart problems but never once related it to my own life. People have to be educated on what that means for their life and I think that education should start early,” she said. She sees that in how her daughter-in-law is raising her grandson. “She parents completely opposite of what I did with my two sons. She breastfeeds him and is introducing him to fresh vegetables and fruits. She’s very into a healthy lifestyle from the start because she knows the history of our family and her own.”
Lifestyle change requires an attitude shift as much as behavior change. “There is no easy fix. You have to decide first that you want to live. It is a slow and never-ending process if you do it right. There is no magic pill to make weight come off,” she said. “When it gets down to it, you have to develop mental grit. You have to quit making excuses and feeling sorry for yourself. The rewards will come, and then it is so worth it. I could not walk to my mailbox and back four years ago — now I can walk 10,000 steps a day. I still walk in pain, but it is easier. In my case, walking is the only treatment for PAD that works.”
Her advice to others with a new PAD diagnosis? “Educate yourself and your doctors on your disease. Advocate for yourself, because many physicians do not even have PAD on their radar,” she said. “Most of all, you must make the lifestyle changes like quitting smoking and beginning a walking program. You will never get better if you don’t. The one thing that keeps me going is knowing that if I had not been diagnosed, I would have more than likely faced amputation of one or both legs. I would say to weigh your treatment options carefully because there are so many new things they are doing now in vascular surgery. It really is exciting.”
Elizabeth has been volunteering with the American Heart Association since 2015. She says it fills a need in her to help. She has joined Go Red For Women and has found a niche for reaching out to others through her PAD blog on the Support Network. “The #GoRedGetFit group is awesome for motivation and support. I highly recommend anyone that is a survivor or has a family history of cardiovascular disease to join that group,” she said.
“When I had my bypass surgery a gentleman from the American Heart Association came to see me and left me some literature. He was so funny and let me know that no matter what, there was life after bypass surgery. I told him that I used to laugh when I was a smoker and say that I wasn’t going to quit because we were all going to die of something anyway. He said, ‘Yes, but some of us don’t die, we have bypass surgery and are left to live with the pain.’ I have never forgotten that, and it has motivated me to educate people about PAD.”