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How to Talk to Family About PAD Pain

Sometimes friends and family don't understand. Reading this will help!

· Patient Stories

How do you explain P.A.D. to your family and friends to help them understand?

Imagine the feeling of having a tourniquet tied around your legs 24/7. That’s what it feels like to have Peripheral Artery Disease. More specifically, when I walk, I start feeling a tugging in my calf. The more I walk, the tugging turns to cramping, which I may also feel in my thighs and buttocks if narrowing becomes significant higher up between my knees and abdomen. I push further walking until I feel what I can only liken to the worst “Charlie Horse” I’ve ever experienced.That’s when I need to stop and rest until I get relief.

Doctors tell me walking is the best medicine. I can usually push through some of the cramping because I know with every step, my body responds to increased demand for blood flow by building a network of collateral vessels. The collateral vessels create a ‘natural bypass’ to re-route flow around blockages. Think about a major highway where lanes are blocked due to an obstacle. Vehicles can take the side roads and re-enter the freeway just beyond the obstacle.

For most people with PAD, walking slows and sometimes even stalls the disease as flow is adequately re-routing. For a small percentage, disease progresses over time and to a point where cramping becomes more severe, more often. If left untreated, it could get to a point where increased plaque build-up further restricts flow, and those “Charlie Horses” I used to experience just while walking, start happening at night. Depending on severity, I may have to dangle my legs over the side of the bed to get gravity to help increase flow to my feet or even stand-up and pace until I get relief.

The key is to walk, walk, walk as much as I can. If cramping becomes more severe and frequent to the point it’s debilitating, what physicians consider “lifestyle limiting claudication” warrants a discussion about interventional and surgical options to improve flow. Treatment options vary based on practice, facility, and region. Three practices may treat PAD: Vascular Surgeons, Interventional Radiologists, and Interventional Cardiologists. They might work in traditional hospitals or in office-based labs. Each has varying skillsets and treatment options that are dependent upon training, access to advanced tools, practice guidelines, and facility standard protocols. 

The most advanced techniques today allow for minimally invasive options including balloon angioplasty, plaque removal using what are known as atherectomy devices, and stents (which is more rare nowadays). More traditional invasive bypasses are also an option and in some cases can be most durable. It’s important that we get multiple opinions and sit as a family to discuss them all and decide what’s best for me prior to any procedure. Know that amputation as an option signals failure, not treatment and we must always be ready to find a new doctor who will exhaust efforts to help me keep my limbs.

Here's how you can help me thrive with P.A.D.:

1. Engage in my treatment process. Sit down and discuss all treatment options and assist with finding multiple opinions prior to any treatment. 

2. Attend appointments with me, even by phone. Help me to ask physicians the critical questions about their skillset. Most importantly, if they perform minimally invasive endovascular intervention, do they have the ability to not only enter from the groin and go down the leg, but also enter in at the calf or foot and come up the leg for tougher blockages? Do they use low barometric pressure as a rule, although I recognize high barometric must be used in some cases? Also, how often, when, and where do you use stents? Many physicians rarely use them anymore in legs unless in cases of perforation, dissection, or threat of quick recoil. Also, do they believe in treating below the knee and into the foot to restore flow? How many procedures like mine do they perform each day/week and what percentage are successful? What is their amputate rate? That’s just to name a few. 

3. Walk with me. Encourage me to walk further. Sit with me on the curb if necessary so I’m not embarrassed sitting on the curb alone. 

4. Don’t rush me. Plan for extra time when we go places so I don’t feel bad for holding you up. I will require extra time in some instances to reach our destination. But know, I truly desire to be with you and I do feel bad that I can’t keep up. 5. Ask me out. I may think twice about saying “yes” to outings because I don’t want to be a burden, but don’t let me do that as I will fall into a depression and isolate myself. Isolation is worse for PAD because sitting around alone in the house leads to less walking and less exposure to sunlight, and critical vitamin D, which not only improves mood but also the immune system. 6. Don’t tempt me. I have to eat healthy. I don’t always have the best willpower. It’s easier when those around me are making healthier food choices as well. Having my favorite temptations handy is not helpful. It doesn’t mean you can’t enjoy them, just not in front of me if possible. Help me find scrumptious substitutes for my favorites. You may end up liking them, too. 7. Understand me. Make me smile. Peripheral Artery Disease impacts the peripheral vessels, mainly the legs, but also the arms, and the brain. Small vessels in the bring can be narrowed, limiting oxygen. So not only will my pain and cramping weigh on me at times, simply lack of oxygen to my brain may impact my mood. Please be patient with and understanding of me when I seem down or upset. It likely has nothing to do with you and just inherent of this disease process. 

8. Help me to modify activities. One of the toughest parts of PAD is that I may no longer be able to run a marathon or play for long periods of time in the park with the grandkids, go on a long shopping spree or walk the length of the golf course for a full round whether 9 holes or 18 holes. Not being able to do ‘what I used to do’ can be depressing. Instead of focusing on what I can’t do, help me to find things I can do and even that we can do together. For example, getting a cart for even a 9-hole round of golf or taking shorter shopping sprees, but more often. 

9. Check my Feet. Ask me to take off my shoes and socks each time you see me and check for any color changes or sores that might be developing. 

10. Encourage me, don’t nag me. Know that I do desire to improve my lifestyle and reduce symptoms. I will have good days and bad days. But your love and inspiration will go so much further than berating me and putting me down. Having this disease is hard enough without the added pressure. 

11. Don’t pull away. I know you love me and don’t want to see me suffer. But we will be stronger together. 

12.  Love me. Hugs are healing. The more, the better.

#peripheralarterydisease #howtoexplainperipheralarterydisease 

 

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