- According to the Amputee Coalition, there are over two million Americans living with some form of limb loss.

Whether by disease or trauma, an estimated 180,000 amputations are performed each year.

On this episode, we'll focus on prosthetics and their ability to improve the quality of life for those individuals who require artificial limb replacement.

Not only will we talk to a medical expert in this field, but we'll meet a man whose personal journey includes an above the knee amputation and learn how he channeled that experience to help others and build prosthetics.

Welcome to A Su Salud, Cheers to Good Health.

I'm your host, Genesis Ortega.

We're broadcasting from inside the PPL Public Media Center in Bethlehem.

My first guest is Dr Geeta Sathe, a physiatrist from St Luke's University Health Network.

Thank you, Doctor, for being with us today.

- Thanks for having me, Genesis.

- By definition, what's a prosthesis?

- So a prosthesis is defined as an artificial limb device that is built to replace a missing body part.

These are typically made by prosthetists, who are individuals who help measure and build a prosthesis for either an upper or lower limb loss for a patient.

- Now, in very general terms, how does a prosthesis work?

- Great question.

In general, the prosthesis is an extension of the body.

To understand how a prosthesis works, one must first understand basic components of a prosthesis.

These include a socket, which is where a residual limb would fit into, a pylon, which attaches a socket to a distal joint end, and the distal end joint, which is either a prosthetic foot or ankle or a prosthetic wrist or hand.

The important part, or the important aspects, of a prosthesis are really how it's suspended to a residual limb.

Without good suspension, a prosthesis can fall off and we don't want that.

Some of the examples of how suspension can be achieved are through a pin locking mechanism, a suction mechanism or a vacuum mechanism.

And this really helps hold the prosthesis securely to a residual limb.

Then comes, you know, how does a patient use a prosthesis?

And that really requires a team approach.

The team consists of the patient, the prosthetist, the physical and occupational therapist who will provide hands-on therapy and, of course, a physician.

Training and practicing with the prostheses can require weeks to months and may require multiple adjustments along the way, which a patient works on with their prosthetist.

Once it starts working for a patient, it's really a great thing to see.

- Now, a prosthesis, I understand, will be matched with a patient's function level.

So how do you determine that?

- Yeah, so functional level is determined by gathering information, as well as hands-on determination of their physical, functional abilities.

To gather the information, we as physicians gather a good history, a physical examination.

We do require... ..a history of their prior level of functioning, as well as their current level of functioning, both before amputation and after amputation, as well as their functional goals.

The other things we keep in mind are medical comorbidities, such as their heart and lung function, as using a prosthesis does put demand on organs such as the heart and lung.

We also look at their visual abilities, their cognitive or thinking skills, in order to learn how to use a prosthesis, their nutrition.

So these are all important factors in looking at gathering information and gathering a good history for a patient.

Then the physical and occupational therapist will be providing hands-on objective measures to determine the functional abilities of the patient from a physical standpoint.

And using both the information gathered and the objective data, we're able to predict a functional level for a patient with limb loss.

- Now, with all that being said, do patients find it difficult at all to learn how to use a prosthetic?

- Yes.

Limb loss is a life-changing event, and there are many challenges they face in the prosthetic process.

They first have to have their body heal before they can be fitted with a prosthesis, and that can take several weeks in and of itself.

Once they're fitted with the prosthesis, learning how to use it takes a lot of hard work, perseverance, motivation, and it can be a challenging process.

However, it can be very rewarding in the end, once the patient learns how to use it and once the patient is able to meet their functional goals because they're really getting back to the things that they want to do again... - Well, then that brings to my next question here.

Are most patients able to return to their normal activities?

- Yes.

Many patients are able to return back to their normal activities.

Basic activities of daily living and basic mobility are really the initial goals of rehabilitation.

And then based on the patient's functional goals, some of them may be more advanced.

And if they are realistic for the patient, they are able to get back to doing those kinds of activities as well, with training and practice and time.

- Now, are patients recommended to sleep or not sleep with their prosthetic on?

- They are recommended to not sleep with their prosthesis, they are recommended in general to only use their prosthesis when they're out of bed.

- Is there a potential for injury there?

- Yes.

There is potential for skin breakdown, especially when you're sleeping and not conscious of where the prosthesis is in space.

There can be injury to the prosthesis itself additionally, and therefore we don't recommend patients sleep with their prosthesis.

- Now, Doctor, we're running out of time here, but I want to end this interview on this note.

You know, what would you like for people to know, patients and others, know about this field of medicine?

- Yeah, so...

So my field of medicine, I'm a doctor of physical medicine and rehabilitation.

I'm in charge of the rehabilitation and medical management plan for a patient with functional deficits.

I look at the big picture and work with a team of experts to maximize a patient's functional abilities.

With regards to my patients with limb loss, I do advocate and advise patients in the prosthetic process, as well as their functional goals, in achieving realistic goals, as well as achieving their advanced functional goals that they wish to achieve.

And that's really what I do as a physiatrist.

I work with a team of experts, as I said, which do include the prosthesist as well as the therapists and the patient.

And we work together as a team in order to achieve what goals that the patient has.

- Wonderful.

Thank you so much, Doctor, for being with us today and sharing your insight.

- Sure.

Thank you very much for having me.

Appreciate it.

- I recently had the opportunity to meet with Dan Ignaszewski, the Chief Policy and Programs Officer at the Amputee Coalition.

Let's take a look.

My next guest is Dan Ignaszewski from the Amputee Coalition.

Thanks for joining us today, Dan.

- Absolutely.

Thanks for having me.

- Let's get started here.

Why don't you tell us the mission of the Amputee Coalition?

- Yeah, the Amputee Coalition's mission is to reach out and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and also to promote limb loss prevention.

We serve the 2.1 million Americans living with amputation and those with limb difference, as well as the 20 million more who are at risk for amputation.

- Let's talk about support.

How do you provide support for amputees and their families?

- The Coalition operates the National Limb Loss Resource Center, which is supported by the Administration for Community Living.

Our National Limb Loss Resource Center actually provides not only materials and resources for people in their recovery and readjustment to live well with limb loss, but also a nationally recognized certified peer support program that connects individuals with others who have experienced similar limb loss or limb difference.

And then also make sure that we connect with people in the clinical setting in hospitals, to provide resources, support and education to help people in their recovery and readjustment.

- Now, when it comes to the Hispanic and Latino community, amputees and their families, how has the Coalition addressed any issues that come up with these people?

- It's a great question.

We know that the limb loss disproportionately impacts people of color and disproportionately impacts the Latinx community.

And we have about two and a half times more prevalence in limb loss due to diabetic and vascular complications for people with limb loss, and so what we have worked to do is make sure that we provide a lot of Spanish language resources through our website.

All of our materials are also translated into Spanish.

And then we also make sure that we have Real-Time Translation Services through our National Limb Loss Resource Center.

- Tell me more about your lobbying efforts for fair insurance coverage.

- Yeah, you know, access to prosthetic devices and access to care can be challenging for people who have experienced limb loss and limb difference.

We know that, from some of the data out there, only about a third of people who experience amputation actually receive a prosthetic device.

And so... We don't really know why that is, but we know that accessing that coverage is a challenge, and so we have worked within states to pass insurance fairness legislation that requires certain levels of coverage for prosthetic devices that, if people experience amputation, they're able to get the devices and care that they need.

We've also introduced legislation at the federal level recently, with bipartisan support in the House and the Senate, the Triple A Study Act, and that legislation actually seeks to address and identify some of those challenges and issues that people have in accessing care, so that we can come up with better policy solutions to try to ensure people get access to the care they need when they need it, including specifically prosthetic care.

- How is that legislation moving in Congress?

Have you heard what the timeline is for that to be passed?

- So we've introduced the legislation just this month.

It was introduced in the Senate and in the House earlier this month by Senators Marsha Blackburn and Tammy Duckworth, who herself is a community member, and then in the House by Representatives Butterfield and Guthrie.

And the legislation seeks to ask the Government Accountability Office to study some of the impacts for patients and some of these access challenges.

There's not really a defined timeline for the passage, but we do think that this is bipartisan legislation that really seeks to address a community in need.

And we're confident that we'll be able to advance the legislation and really gain the traction that we need to identify those challenges and find solutions.

- Now, can people at home help you with those lobbying efforts?

Can they call their congressmen?

- Absolutely.

If people are interested, we can have them contact their members of Congress and ask for them to support the Triple A Study Act.

In the Senate, It's Senate Bill 1089.

And in the House, it's HR 2461.

If you call your offices and ask them to support the Triple A Study Act, they'll be able to look that legislation up and ask them to co-sponsor it.

We'd really appreciate that support.

- Tell us more about the Limb Loss Task Force.

Yeah, the Limb Loss Task Force is a convening panel of experts, both community members, researchers and allied health professionals, who try to identify some of the challenges and lack of research and data that exists for the limb loss and limb difference community.

The truth is that, while we represent the 2.1+ million Americans living with limb loss and those 20 million more at risk for limb loss, the data and the research has not been as robust as what you see in some other populations.

And so the Limb Loss Task Force really strives to identify ways that we can improve research, ways that we can improve the care continuum, to enhance access and coverage for patients experiencing limb loss, but also helping to identify ways that we may be able to reduce some of the complications that can lead to limb loss, some of the wound treatments, some of the vascular and diabetic issues and complications that often lead to amputation.

- Tell me more about another program, the Amputee Peer Visitor Program.

- Yeah, the Amputee Coalition Peer Visitor Program really is a flagship of the Amputee Coalition, and it's operated through the National Limb Loss Resource Center.

The goal is to meet people where they are.

And in this setting, especially with Covid and the restrictions from physically being able to get in touch with people, we've offered both in-person peer visitation as well as virtual visitation through our Peer Support Act, and people are able to connect with one another.

We actually help to match people based on level of limb loss, cause of limb loss, age, sex, ethnicity, trying to make sure that we connect people to people who have already experienced amputation who can help people navigate what their experience may be and what they can prepare for in their recovery readjustment.

Those certified peer visitors are trained through the Amputee Coalition.

That's a nationally recognized program and it is really central to being able to provide support that people need when they're looking to recover and readjust after amputation.

- Now, when we're talking about this topic, an important part of this community are veterans and active duty servicemen and women.

What does your organization do to support them?

- It's a great question.

- The Amputee Coalition has strategic partnerships with both the Department of Defense and the Veterans Administration.

Those partnerships actually provide the same resources and materials that civilians would receive in their recovery and readjustment to all of the clinical settings within the Department of Defense and in the VA system of care.

So if you have experienced amputation and you're a veteran or if you're an active duty combat military member that experiences amputation, the focus is that you get the same materials from the Amputee Coalition, through the National Resource Limb Loss Center, that civilians would.

And you are also connected to a specialized certified peer visitor program specifically designed for our military veterans and Wounded Warriors.

- Great.

Now, let's talk about resources for a second.

What resources are available for amputees?

- You know, there are a lot of different resources out there.

The Amputee Coalition has a number of different publications and resources that are based on level of limb loss, cause of limb loss and how to adapt to limb loss more broadly.

We also have a lot of different resources that are available through the National Limb Loss Resource Center, including fact sheets, including materials and supports that can connect people to Amputee Coalition resources, as well as resources that may be available within their communities and in their local setting.

- Dan, talk to us about any upcoming events that you have.

- Yeah, you know, April is Limb Loss Awareness Month and Limb Difference Awareness Month, and so the Amputee Coalition has been celebrating that throughout the month of April.

We also have our youth camp, which is for children between the ages of ten and 17.

That youth camp will be virtual this year because of the Covid-19 pandemic.

But then we're also hosting our national conference later this fall.

It'll be in the end of September.

And we're looking to do that as a hybrid, both in person and virtual event.

- Great.

Thank you so much, Dan, for being with us today.

- Thank you very much.

Appreciate it.

- My next guest is Matt Graham, a man who builds and designs prosthetics for others, but he's not here just to discuss how he makes his living.

He's also here to tell us his story.

Matt is an amputee as well.

Thanks for joining us today, Matt.

- Absolutely.

Thank you for having me.

- Matt.

Let's start here.

Can you share your story with us?

- Absolutely.

So when I was four years old, I had an accident in my backyard.

I was actually was run over by a lawn mower and was taken to our local hospital and then flown to Children's Hospital, where I spent the next seven weeks.

I had 21 surgeries over those next seven weeks, which resulted in me being an above the knee amputee.

And basically, I've grown up with a prosthetic limb since the age of four.

And when I was in college, I was unsure of what I was going to do for a career.

And it just made a ton of sense to get into the field of prosthetics.

I've always enjoyed working with my hands, being involved in working on cars, being active outdoors, building, stuff like that, and so this gave me the opportunity to work in the medical industry as well as being able to work with my hands as well.

So it was a great opportunity for me to apply some of the hand skills that I really like using, but also the relatability with patients of understanding exactly what they're living with and going through.

- And you know what?

I find it inspirational as well.

You took something terrible that happened to you and are channeling it to help other people.

I also understand that you're involved with some organizations that help people with disabilities participate in sports.

Can you tell us more about that?

- Absolutely.

So we do a lot of work here at MedEast in order to help people not only get back to living everyday life and doing the things that they want to be able to do, but sometimes doing more than that.

Some patients that I work with want to get into running.

And I'll ask, "How much have you run "before you had your amputation surgery?"

And they say, "Well, not very much.

"Played sports when I was young.

"But I want to get back to it now.

"I feel like I have the ability to go back to that."

And so we work with several organizations that provide grants for sports-specific prosthetic limbs.

Insurance companies don't cover anything outside of a prosthetic device that's needed for everyday living.

And so a sports-specific prosthetic limb, or a prosthetic limb that can actually be submerged in water, they're devices that they don't look at and think are necessary for the amputee population to have.

And so we started working with several nonprofit organizations in order to be able to get our patients those devices because they are costly.

Just this year, we found that the need is still lacking, even with the organizations that are available out there, and so we actually started our own 501(c)(3) nonprofit organization, which... We're basically looking at, "What are the needs of the amputee population "that aren't going to be met by, one, the insurance company "and, two, the financial responsibility to a patient?"

And so our nonprofit, the Legendary Foundation, is actually being utilized to help cover...

If the insurance company only covers a portion of what an out-of-pocket expense would be, we have funds that we're able to help that population get into just an everyday prosthesis.

But we also have the ability to do sports-specific prosthetics, whether it's year round.

So whether we're looking for a prosthesis for snowboarding or wakeboarding in the summertime, or mountain biking, any type of activity like that, we want to be able to provide the patients with those resources.

We have a couple of mottos that we really live by.

And the first that we really live by is "Getting you back too," which...

It's important for us and our clinicians to understand that the prosthetic limb that we're fitting to a person is individualized.

And what they want to get back to is not going to be the same for each individual person.

So we have to come up with the correct fit of a prosthesis, but also the correct componentry to allow them to do that.

And so we believe in that.

And we've built our business around the practice of "We take care of a person, not a limb loss."

And so our holistic approach at MedEast, we've started to incorporate in diet and nutrition counseling for our patients.

55% of diabetic dysvascular patients that have an amputation lose their other leg within the first three years.

And we look at the research and these kind of numbers, and it's jaw-dropping to see.

And we want to change that.

How do we lower that number?

And so we have diet and nutrition counseling for our patients.

We have mental health counseling for patients that are feeling depression or just feeling lost, don't know what to do.

We have those counselors that are able to help.

And we partner with several organizations so that we treat an entire person, not just a limb loss.

- Well, let me ask you this.

What are the most common types of prosthetics that are available on the market?

- So there are a myriad of prosthetics that are available.

The most common are for the lower extremity, where the amputation level is what you'll hear called below the knee amputation or above the knee amputation, which is just describing "What is the actual level "that the amputation surgery was done at?"

The use of computer-controlled hydraulics for knees, and now foot and ankle systems, uses of carbon fiber and fiberglass that have really...

They've changed prosthetic design, so that we have lighter weight prosthetics that actually have more energy returned, so patients are able to move and move easier.

And it's an exciting time to be working in this industry because we're starting to get outside of what is called normal human locomotion.

As an industry, we always try to mimic the normal human leg.

And a lot of the manufacturers out there and a lot of the prosthetics companies out there are saying, "Why are we limited to normal human locomotion?

"Why can't we be better than normal?

And the goal of our industry right now is, "How do we make someone who's had an amputation "better than what that normal human can be?"

- Now, you also detailed for us some steps that patients will go through in obtaining a prosthetic.

But let me ask you this overall.

Is it a painful process for the patient?

- So post-amputation surgery, there can definitely be pain involved.

An amputation surgery is a major surgery to the body.

There's a healing process.

And once that limb is healed, there shouldn't necessarily be pain from a standpoint of wearing a prosthetic limb.

Phantom limb pain is a major issue in amputation surgery.

The best way I had it explained to me was that the nerves in our leg, they had a job to do for a very long time and they did that job.

And once that amputation surgery happens, that nerve doesn't know that it doesn't have that job to do.

So it can create a lot of pain for patients, a lot of sensations that their missing limb is still there.

And there are medications that can help with reducing that.

And wearing a prosthetic limb and being active on a prosthesis can actually reduce the severity of that, as well as how... And eventually, the body learns, those nerves learn that they have the new job to do, and wearing a prosthetic limb and actually being active, that helps to reduce the severity and the amount of phantom limb pain and the sensation that occur.

- What piece of advice do you find yourself giving to patients more frequently when they come in to see your organization?

- So there's two major things that I think are extremely important.

One is staying active, keeping the range of motion in the joints in our body, maintaining a healthy lifestyle.

It's essential.

And that's not even just for prosthetic patients.

That's for everybody.

Maintaining a healthy lifestyle will absolutely allow ambulation with the prosthesis to happen easier.

And like I said, that range of motion in the joints, making sure that the information we get from our therapist after surgery, to keep stretching out our knees, our hips, all that kind of stuff, it's extremely important for a successful prosthetic outcome.

- Wonderful.

Thank you so much, Matt Graham, for being with us today.

- Thank you.

I appreciate it.

I want to thank our St. Luke's University Health Network expert, Dr Geeta Sathe, the Amputee Coalition representative Dan Ignaszewski and amputee and prosthetic fabricator Matt Graham for joining us today.

And thank you for tuning in.

We look forward to seeing you again soon.

If there's a medical subject you'd like for us to cover, send me a message on social media.

You can find me on Facebook and Instagram.

Plus, you can tune in to hear more of my reporting on 91.3 FM, WLVR News, your local NPR News source all day, every day.

I'm Genesis Ortega, and from all of us here at Lehigh Valley Public Media, stay safe, be healthy and cheers to your health.