How to Be a Good Patient

Web Development inMotion

Volume 20, Issue 4 July/August 2010 | Download PDF

By Jason T. Kahle, CPO, LPO, and M. Jason Highsmith, DPT, CP, FAAOP
It is important that the prosthetic industry focus on disseminating information that can most benefit the amputee, and it’s understandable why amputees turn to the experts for answers. However, there is much that you can do for yourself to take control in the aftermath of amputation and well into your recovery. It’s important to use your time wisely with your prosthetist to get the most out of your visit. The following advice is meant to enhance your experience with your prosthetist and to help you become as self-reliant as possible.

Choose your attitude wisely

The most successful patients are those who move on despite the speed bumps on the road to rehabilitation. When you become an amputee you have a choice – stay fixated on the fact that you’ve become an amputee or focus on what’s important in your life and recognize that being an amputee doesn’t mean that you can’t achieve what you’ve always wanted to do. Your experience as an amputee is in part determined by which attitude you have.

Set reasonable expectations and goals

It’s important to have an honest conversation with your prosthetist, therapist and physician about reasonable goals. Expecting that your prostheses will make you superhuman like the Six-Million Dollar Man is unrealistic. The human body is amazing, and cannot possibly be replaced, and a prosthesis will not make you more athletic than you were before your amputation. If you weren’t a runner before your amputation, your prosthesis won’t make you a runner now; only you can make a runner out of yourself. You should be able to go back to doing most things you were doing before your amputation. However, the situation may be different now, requiring trial and error, practice, therapy and, above all, patience and initiative. For people who have the desire and ambition, having a prosthesis or amputation is rarely a limiting factor. We have many patients who golf, run, sky dive, bike, rock climb, kayak and more.

The Agency for Healthcare Research and Quality (ahrq.gov/Ad Council) has excellent guidelines for both clinicians and patients. For example, the following questions (modified here to apply to prosthetics) are designed to help patients understand procedures better so they can play an active
role in their care. Consider these and write a list of your own questions and concerns before you visit your healthcare provider.

  • What is the test prosthesis, socket, foot,
    knee, etc. for?
  • How many times have you done this
    procedure?
  • When will I get the results?
  • Why do I need this surgery?
  • Are there any alternatives to surgery
    (prosthetic accommodations, etc.)?
  • What are the possible complications?
  • Which foot, socket, suspension, therapist,
    etc., is best for my needs?
  • How do you spell the name of the
    prosthesis, socket, foot, knee, etc.?
  • Are there any maintenance issues,
    additional costs, time commitments?
  • Will this prosthesis, socket, foot, knee,
    etc., interact with the prosthesis, socket,
    foot, knee, etc., that I’m already using?

Hygiene

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Examples of skin reactions that can result from poor hygiene.

Patients rarely have a reaction to a material that is used in prosthetics; most materials are either medical grade and/or hypoallergenic. While such reactions can happen occasionally, skin problems more commonly occur due to poor hygiene. When perspiration sits on the skin instead of evaporating, the skin can react to the microbes and chemicals in the perspiration or can break down due to chronic exposure to the patient’s own body fluid. It’s also important to your health and the health of the professionals who will
be working with your prosthesis that you clean your entire prosthesis daily. Unless the manufacturer or prosthetist states otherwise, we recommend using a spray bottle with a 50/50 mixture of high-level isopropyl (above 70 percent) and water. Dry the prosthesis with a clean paper towel. Socks that go next to your skin should be washed after one use. Liners should also be hand-washed with soap and water after one use. In short, anything that goes next to your skin should be washed daily. Most socks and liners are washing-machine safe. Ask your prosthetist for advice on cleaning your prosthesis. He or she will be glad you did.

Self-adjustments

Many patients have a basic knowledge of mechanics and a basic tool collection, but this doesn’t qualify them to make self-adjustments. When you change one thing on a prosthesis, it will always have implications and affect something else. Knowledge of biomechanics, anatomy and materials must be a part of the adjustment process. We have several prosthetists and prosthetic technicians who are our patients as well. They don’t make their own adjustments; they call us when they have problems and we work it out together.

Self-diagnosis

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This patient cut the liner to create relief, creating a worse problem.

Different prosthetists may defer more or less to what the patient wants, while others will dictate what they deem best for their patients. Our philosophy is that it is our role to give you the best advice, and your role is to either take that advice or not. Whatever your prosthetist’s philosophy – and your tolerance for that philosophy – remember that he or she sees hundreds, even thousands, of patients and has a wealth of knowledge. Use it to learn as much as possible and to meet your needs. Self-diagnosing may lead you in a direction that could be detrimental to your health.

Timeliness

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Here, a torch was used to create relief, which ruined the interface. The replacement took 4 weeks to make.

It’s important to be on time with your prosthetist. Prosthetists have many patients, and sometimes our schedules are fragile. We may have to go to the hospital on an emergency call, book a special one-day procedure for a patient, or have eight patients scheduled that day. The point is, if we don’t have the allotted time required to complete a task, then someone’s time will be compromised; it might be yours. Walk-in appointments are ill-advised; call ahead and let someone know that you are coming.

Overall health maintenance

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Both rock climbing and kayaking are great alternatives to running for amputees.

The number one thing you can do for yourself as an amputee is to lose weight if you’re overweight or not gain weight if you are not. Fitness is important to overall health – body, mind and soul. If you can’t go for long walks or run, consider one of numerous other exercise routines, such as biking, swimming or even kayaking. Stay on your prescription protocols and let your prosthetist know if they change. Many prescriptions, like blood thinners and diuretics, will affect your volume. If your volume changes, then your fit will change.

Be a patient patient

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Note the malformed hip in this image; this X-ray was invaluable in designing a transfemoral (above-knee) prosthesis for this patient

In a busy year, a prosthetist may fit 200 prostheses. It takes about an hour to fit a prosthesis. There are about 2,000 working hours in a year. So what does the prosthetist do with the other 1,800 hours? Mostly, adjusting those prostheses. Fitting plastic on the human body isn’t easy, and often requires many adjustments to achieve a proper fit. Also, your body changes, and with it, your fit. Be aware of this and understand the process so that you can have the proper amount of patience required for the prosthetist to provide you with a proper fit.

Help prevent medical errors

Know your past and present medical history. Knowledge of your medications, X-rays/images, physical therapy and surgical andprosthetic history provides important insight for efficiently designing the right prosthesis.Be sure to discuss your insurance with the prosthetist’s staff. It’s important, for instance, to understand the difference between Medicare and a Medicare supplement. Let the staff know if your insurance changes; if you’re considering a change, discuss the implications of that change with your prosthetist.

In summary, healthcare is a business – your business. You would never make a business investment or large purchase without being an informed consumer. Being a “good patient” is very similar. You have needs; understand them. A market exists to satisfy your needs; understand the market and its options. Be responsible and self-reliant, and if your prosthetist is not doing his or her part, go somewhere else, knowing that you are a good partner and a good patient.