Steve Hamburger from Westlake Village, California, first noticed the initial signs of trouble as he experienced pain in his legs when trying to sleep. He later found out that he suffers from peripheral arterial vascular disease (pAVK).
Fortunately, his family was already aware of PAD – and what it would mean for them.
„I am fortunate to have a family with a medical/sports background,“ says Hamburger. „My wife spent her career in the medical field as head of radiology, and my eldest son worked as an EMT for several years.“ „When I was first diagnosed, my wife understood how pAVK could eventually lead to me being in a wheelchair, if my pAVK worsened to the point of requiring an amputation.“ He considers the support of his wife as a crucial factor in changing his lifestyle to assist in his pAVK treatment.
However, if you do not have this kind of support, it is important to help your loved ones understand the condition and its impacts. Here’s how.
Although it is common, many people have never heard of pAVK, which can make it difficult for affected individuals to explain the disease.
PAD is best likened to a „heart attack of the legs,“ says Kym McNicholas, founder of the non-profit PAD group The Way To My Heart in California. McNichols, who does not have PAD, says it feels like having a tourniquet around the legs every day.
PAD affects the circulation in the lower legs as plaque accumulates to a point where the blood flow is restricted or interrupted. Symptoms may include leg pain, cramps, and numbness. You may also develop ulcers on your feet or toes due to the lack of circulation providing essential nutrients, including oxygen that nourishes the tissue.
When walking, one feels a pulling in the calf, according to McNicholas. „The more you walk, the pulling turns into cramps, and you might also feel it in your thighs and buttocks,“ says McNicholas. Continuing to walk, you may eventually feel it is the worst pain you’ve ever experienced.
Pain from pAVK can be severe. It can also affect your mood. A chronic illness can be mentally and emotionally taxing.
McNicholas recommends telling your loved ones the following: „Please be patient and understanding with me when I am feeling down or upset. It likely has nothing to do with you and is simply part of this illness process.“
Having individuals who support you and understand the illness and its treatment can make a big difference in the quality of life for someone with pAVK.
It can be helpful to communicate to people what you think about certain issues and activities – what you like to talk about or what you can or cannot do.
„Patients have the right to decide what they want to share about their condition and with whom they want to share it,“ says psychotherapist Samuel Jones, LCSW from Georgia. „Furthermore, it’s important to be aware of your limits and prioritize how to allocate your energy and time to build a satisfying life despite a chronic illness.“
Setting boundaries can help you emotionally and also show people what you can physically handle and what you can’t. Take walking, for example. It significantly improves leg circulation and helps alleviate pain from pAVK. But you may not be able to walk as far as someone without PAD. Therefore, it is important for loved ones to understand these limitations, says Ohio cardiologist John Phillips, MD, creator of the Save My Piggies podcast aimed at people with pAVK. („Save My Piggies“ refers to avoiding amputation.)
„At family gatherings or outings, patients may need more time to find a seat, slowing down the group,“ says Phillips. „Having a walking partner can ensure that the patient walks regularly, and I have found that a loved one makes an excellent walking partner for these individuals.“
Family members and friends of people with pAVK play a crucial role as caregivers. The key to supporting your loved one in living with pAVK is monitoring the person and noticing any changes in their activity level. Phillips recommends paying attention to changes in movement, walking habits, and mood.
„Patients whose pAVK worsens often become less active and in some cases, immobile. This can ultimately lead to wounds that don’t heal, increased obesity, and… depression,“ says Phillips. „Family members and friends need to pay attention to significant changes in activity levels and check in on their PAD relatives weekly.“
For those diagnosed with pAVK, showing support is of great importance. Going to doctor appointments and being involved in the treatment process are simple ways to show your love and support.
„Instead of focusing on what I can’t do, help me find things I can do and even things we can do together,“ says McNicholas.
Hamburger was able to lead a healthy life despite pAVK. By creating a balanced exercise plan and taking the right medications to avoid surgery, he is content with his lifestyle.
„Loved ones can help intensify an exercise program and eat properly,“ says Hamburger. „And if the pAVK worsens, make sure you are in good vascular medical hands, and avoid amputation by all means physical and medical.“