Mon April 22, 2013
Learning To Live As An Amputee
Originally published on Wed April 24, 2013 2:43 pm
NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan, in Washington. Too many of those injured in Boston last Monday lost limbs in the explosion and now face a long and difficult recovery. Because the pressure-cooker bombs were in bags placed on the sidewalk, the shrapnel maimed and shredded many people's legs. Their basic challenge, of course, is to walk again. But the physical, mental and emotional process stretches far beyond those first steps.
These new amputees will have to make adjustments and changes they never anticipated, but other amputees have a pretty good idea about what's ahead. So if that's you, call and tell us what we don't know: 800-989-8255. Email us: email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later in the program, a visit to the world's newest country, South Sudan, building itself from scratch. But first, we begin with the story of amputees, and let's start with a caller, and Fidel(ph) is on the line - whoops. Fidel is with us from Denver.
CONAN: Hi. What's your story?
FIDEL: Well, back in '04, my wife treated me with a gift of a motorcycle. I was in the military at the time, and on leave, she presented me with it. Shortly thereafter, I did get into a no-fault wreck. It was a not-very-well-lit road, loose gravel. Long story short, woke up a few days later in the hospital with the doctor down by my leg, and I had a lower right amputation happen.
The military, you know, I still - I stayed in until '07, and I came out. But what I wanted to say about the amputation is, you know, that first year is rough. It's very, very rough. And that support group that they need to get into, if you can find it, do it immediately. Don't go through, you know, the (unintelligible) that you're going to face with the loss of your limb. There's just really great support groups out there right now.
And let's see what else. Well, what else would you like to know?
CONAN: Well, physically, what is it like getting around? Are you - well, you're obviously not the same as you were before.
FIDEL: Well, obviously not, yes. But it gets better. And with the advancements of what prostheses are out there nowadays, it's astounding. I mean, I play softball. I run. I exercise. I live a normal life. It's almost as if I had my regular leg, but obviously, I don't. And it gets easier with time. It really does.
CONAN: But one week afterwards, the people in Boston are going through it. One week after, the world looked pretty dark, I guess.
FIDEL: Yes. Yeah, yeah. And I'll tell you what: Right now, I'm pretty sure emotionally, physically, mentally, they're in a pretty dark place, you know, because it's new. And talk about phantom pain, that's something that even, what, nine years later of my amputation, I still get them from periodic, time to time.
CONAN: The phantom pain is your leg hurts even though it's not there.
FIDEL: Exactly, exactly, and there's medication for that. I mean, I took Neurontin for a long time, and that helped it subside. But, you know, I weaned myself off a little bit - I'm not really going to actually say weaned. With my doctor's help, came off of that medication, because it got to a point where it really wasn't there anymore.
And when I say it comes and goes, that - because I live in Colorado, and day to day, weather can be funky over here, and so cold-to-hot does mess with the pain that comes and goes.
CONAN: Weather has been particularly funky this particular year.
FIDEL: Oh, yeah.
CONAN: I do have to ask, you talked about support groups. In a way, these people can form a support group of their own. Do you think that might help them?
FIDEL: Oh, yeah, for sure. I mean, because there, they've got that common bond of what they were doing together, and that was running the marathon. I mean...
CONAN: Many of them were there as spectators, but yeah.
FIDEL: Yeah, for sure, for sure, but there. I mean, that, having been there, you know, either running or experiencing it or witnessing it, you know, it - they have that. And that is the biggest tie, man. I mean, that would be something that they should get together and talk about it, I mean, because obviously, that's the best medicine that there is, is talking about it.
And then, you know, the physical part about it, they'll have to do that, you know, in the hospital with their physical therapy, and so on and so forth.
CONAN: Well, Fidel, thanks very much, and continued good luck.
FIDEL: Thank you.
CONAN: Let's turn now to Mike LaForgia, himself an amputee, who joins us now from his office in Garden City, New York. And Mike LaForgia, good of you to be with us today.
MIKE LAFORGIA: Hi, Neal. Thank you very much.
CONAN: Based on your experience, I wonder what advice you might offer to the Boston folks who are just beginning to come to terms with their injuries.
LAFORGIA: Sure, yeah. And by way of intro, or my circumstances, I contracted - the way I became an amputee is I contracted bacterial meningitis, which is a disease that - it impacts about 3,500 people a year in the United States, and it's a very deadly disease. And what - for those that do survive, because of the way it affects you, and it's such a vicious infection, your body goes into septic shock.
And if you're not familiar with septic shock, septic shock has an effect in which the body shoots out blood clots to shut off blood flow to the extremities in an attempt to save your life. And that process ends up causing a frostbite-type effect and results often in amputation.
So although I wasn't expected to survive the night when I first became ill with bacterial meningitis, I did, and I did survive, you know, a 10-day coma and a couple of months in the hospital. That's the good news. I did, however, end up with amputations.
For me, I had bilateral amputations, so I lost the toes on my left foot, and I lost most of my right foot. Initially, my right foot was rebuilt using the - what's called a flap surgery, where they - and some of the folks from Boston, I'm sure, are facing these types of decisions - they rebuilt the foot using the lat muscle of my left back. And that was quote-unquote "functional" for about a year.
And I elected a year later to amputate the leg below the knee to improve mobility and lessen pain and just return to a more active lifestyle.
CONAN: And everybody's story will be different - medically, obviously - even the people injured in the same incident in Boston.
CONAN: But as they come to terms with this, in essence, you decided to go for the greater operation, but you were already severely restricted.
LAFORGIA: That's correct. That's correct. Yeah. And the gentleman that called in earlier said a very - a couple of very accurate things. I mean, right, I mean, the initial impact of this is very shocking, especially for those who don't have the luxury of making a decision like I did or come into it via a traumatic accident like the folks in Boston have been involved in.
And the first year will be very difficult. The things that he mentioned, the fit of the prosthetic socket, will change with weight change, with weather change, with just healing and swelling from surgeries. But after the first year, it does begin to get easier, and they can absolutely - it's hard to look at it now, but down the road, they can look at a time when life will be fairly normal.
For me, in my now seventh year as an amputee, it's really not often on my mind. I can, you know, put my leg on at six in the morning when I go to work and take it off, you know, at midnight when I go to bed, and I can do many of the things that I'd done before. I was an athlete before this occurred. I had done two New York City Marathons and a half-Iron Man before I lost my leg, and I've since returned and done one New York City Marathon since then.
So you really can achieve - you know, with a little more challenge and maybe not as fast as the last time, but you can achieve the same level of activity, just in some cases, in a different way.
CONAN: And when you say put your leg on at 6 o'clock in the morning, you've got more than one leg.
LAFORGIA: I do, yes. I - and because of my activities, I have my walking leg. I have two running legs, which I use because of the partial foot side, I require a running blade. You've seen - you know, you've seen the runners on the marathons...
CONAN: Sure, Oscar Pistorius, yeah.
LAFORGIA: Yes, yes, sometimes not a good guy to bring up these days, but yeah.
CONAN: He's got his own problems, but still.
LAFORGIA: Yes, but a great example of, you know, pushing the limit on what can be achieved. And so yes, I look like - very much like Oscar when I run. And then I have a bike leg, which I utilize, which clips directly into my bike pedal. And I even have an older walking leg, which was converted into a swim leg, which lets me sort of walk into the ocean, as opposed to, you know, a pool or something like that.
So I do, I have quite a bit - and I use those things to stay as active as I can, and it's important to stay fit as an amputee and maintain your weight, because a five-pound weight change can change your fit and cause you to have to go back and see your prosthetist.
CONAN: We want to hear from the amputees in our audience to tell us what we don't know about life without a limb or two. Give us a call: 800-989-8255. Email firstname.lastname@example.org. And - excuse me - I just wanted to get Maryann(ph) on the line. Maryann's on with us from Boise.
MARYANN: Hi, this is Maryann.
CONAN: Yeah. Go ahead, please.
MARYANN: Hi. I'm a double amputee. I lost my legs in a similar situation. It was a landmine blast while I was working in Africa. And I woke up in a hospital not knowing how I got there and realized I had no legs below the knees. So it was a very, very similar situation.
CONAN: And what is it that we don't understand about it, those of us who are not in your situation?
MARYANN: Well, all the things that the previous folks have mentioned about fit and the ongoing pain and discomfort, but as a woman, and the appearance being very important to me, I think it's really important that if any of these are women, that they need to really advocate for something that they can live with so that they're not relegated to have to walk around in long pants and long skirts and that sort of thing for the rest of their lives.
And also, another point I wanted to bring up is the problem of insurance, that unfortunately, a lot of the insurance that Americans have does not fully cover prosthetics, and some, it's not covered at all. And so this may become an issue because one prosthetic limb is, we're talking $10,000 and up. And you're going to need more than one in your lifetime, for sure.
And so this is something that people are going to have to learn to advocate for themselves and really be assertive about.
CONAN: Well, we're told that there's been a lot of donations to a fund in Boston that's going to be administered by Kenneth Feinberg, the distribution of those monies. So perhaps - we don't know how that's going to be divvied up, but perhaps there will be some help for these people with their prosthetics. But obviously, that does not - that only covers the people there in Boston from this particular incident, and not the many people around the country who have to live with this, like you, Maryann.
But thanks very much for the phone call. We appreciate it. If you've lost a limb, call, tell us: What don't we know about living as an amputee? 800-989-8255. Send us an email: email@example.com. More in just a moment. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. According to the National Limb Loss Information Center, about 1.7 million Americans live without at least one of their limbs. The bombings at the Boston Marathon added several new amputees to that number. Their ranks have also swelled with veterans in the past decade who have lost limbs in the wars in Iraq and Afghanistan.
Many of those injured soldiers pass through the Center for the Intrepid at Brooke Army Medical Center in San Antonio. The chief of prosthetics there will join us in a minute. First, if you're an amputee, call and tell us what don't we understand about living without a limb, 800-989-8255. Email us, firstname.lastname@example.org.
Our guest, Mike LaForgia, who became a double amputee in 2006. And let's see if we can get another caller on the line. Let's go to Kevin(ph), and Kevin's with us from Phoenix.
KEVIN: Yeah, hi there.
CONAN: Hi, go ahead please.
KEVIN: Yeah, I was talking with your - the guy briefing me, and one of the - a couple of things I mentioned to her was, you know, the importance of getting a really good prosthetic guy because, you know, that's - I mean just those guys really - you can't - the first guys I got were just terrible, and a lot of people had problems with them.
But another thing I brought up with her is a lot of amputees I've run into with have a lot of trouble with sleep, a lot of sleep issues. And so a lot of them end up taking medication just for that. And I think that's also contributed to some of the people I know that end up with, you know, problems with pain medication, taking it for too long and some other things like that. Hello?
LAFORGIA: Hi Neal, did we lose you?
KEVIN: No, this is...
CONAN: Ah, hello, my mic went dead momentarily.
CONAN: This is a new studio I'm having to get used to. Mike LaForgia, do you have problems sleeping?
LAFORGIA: I don't, I don't. I did want to comment, though, on the first thing that the gentleman mentioned there, which is the importance of a good prosthetist. You know, we have a slogan in our amputee world which is there's no such thing as bad prosthetics but only bad prosthetists.
It's a very unique medical field. It's a combination of, you know, mechanics and really artwork in terms of the fit of the socket to the leg. So you do want to - you don't want to waste a long time working with a prosthetist that's not working for you. So, you know, avoid the small storefront-type of prosthetists. Look to, you know, the hangers.
There's A Step Ahead in New York, which is, you know, certainly in the top three in the nation, I would say. Look for those. It's worth even flying, you know, multiple states to receive the right care. There's too many stories of people who have gone 10, 15 years unable to walk right, and they happen to see the right prosthetist, and, you know, it's night and day. So don't waste a lot of time on the wrong guy. That's a key point.
CONAN: Kevin, thanks very much for the call and for the advice.
CONAN: Joining us now is John Fergason, chief of prosthetics at the Center for the Intrepid Rehabilitation Facility at Brooke Army Medical Center in San Antonio. Nice of you to join us today.
JOHN FERGASON: Thank you for having me, and a pleasure to be involved today.
CONAN: And we keep hearing how much prosthetics have improved. Can you give us an idea of how much?
FERGASON: Well, I think there's been drastic improvement, certainly over the last two decades, and a large march forward in even the last decade. You know, your last caller discussed the importance of the interaction with a good prosthetist and finding a good prosthetist. I really couldn't echo that more, where really as important, or many times more important than the technology, is the human factor and the interaction that the individual has with the person they're really depending upon to get them ambulating again.
So I will often say that it's not the technology that moves you forward so quickly, it's the rehabilitation process, it's the other professionals you interact with, and certainly the largest key to, I think, a successful outcome is going to be the individual drive of that person who has suffered this life-altering event.
CONAN: And the importance of these technology, yes you have to have the right person, but the technology has improved tremendously.
FERGASON: No question, no question about it. So if you for instance have an amputation that's above the knee, there is a much larger opportunity to progress farther than you would have several years ago. The advancements in microprocessor technology, where a knee can actually control a certain amount of your pace, it can control and allow you for safe descent down a hill or a ramp, even step over step going up stairs, which several years ago was really pretty unheard of.
You can even go from a walk to a run with the right component to help you do that.
CONAN: Mike LaForgia, I just wanted to ask you: In your experience, in your time as an amputee, have things improved?
LAFORGIA: Sorry, you know, it's interesting. I do agree. I've seen tremendous strides in the innovation but not much below the knee. It's very true, the above-the-knee innovation has excelled. I tend to think that even greater than the innovation, the change in expectation has been even greater.
I think what's - what an amputee can expect today has never been better. There is a willingness, you know, for - or almost normal for a prosthetist to begin working on a running leg for a patient that he would never have considered, you know, five, six, seven years ago.
We have soldiers leaving, you know, Walter Reed Hospital with a running leg, you know, as normal commission. That's the practice. They leave with their walking leg and their running. You can't do a race these days without seeing an amputee in a 5K or 10K in your local neighborhood. So there's - the bar has been raised on what amputees can expect when working with their prosthetist, and we're all pushing the envelopes on, you know, not being willing to just accept being able to walk to work every day.
We want to run. We want to ride our bikes. We want to be able to coach our kids' soccer and baseball, and people are doing it. So, you know, innovation has been great, but I think the expectations of what you can do is even greater.
CONAN: And it's interesting, John Fergason, that expectation, once people get over the shock, well, they expect to be able to do a lot of things. I assume that helps.
FERGASON: Yes, it is a tremendous driver for us on the provision side of prosthetics to where when someone comes to me with very lofty expectations, my job is not to shoot that down. My job is to say OK, let me come along beside you, and let's figure out how we're going to do this.
Now there are a lot of factors that can influence that. But certainly if someone comes to me with very low expectations, those are easily met, right. But a lot of it is oftentimes to individual circumstances. So I can't really compare possibilities for someone with maybe a partial foot amputation or a long below-the-knee amputation to someone with a high above-the-knee amputation or someone even with double amputations.
So you have to kind of temper it a little bit about the possibilities, but I - really I'm certainly never one to say no, you can't do that. I'll never say that to somebody. I'll say we will try and do everything possible to do that. You decide what you want to pursue, and I will help you get there.
CONAN: Here's an email from Edward(ph) in Holland, Michigan: I'm a double amputee, both legs below the knee, lost because of infections. It has changed my world. I wish I could say that things are getting better, if ever, ever so slowly. I think we all go through the Kubler-Ross stages of grief. I'm still at the anger stage. I would recommend a support group.
And let's see if we can get another caller on the line. This is Ryan(ph), and Ryan's with us from Midland, Texas.
RYAN: Yes, sir, hello.
CONAN: Hi, go ahead, please.
RYAN: I lost my left leg about a month and a half ago. There was a guy outside stealing stuff from our yard, a (unintelligible) charger and wood. I got a gun and went out there, a 12-guage shotgun, chased him off, dropped it to my side, walked inside to dial 911 on my phone, hit 911 boom, and took it off.
I woke up and long, long, long story short, woke up in the hospital, and my foot was on a cookie sheet, my leg was on a cookie sheet, and I was in a big mess(ph). And listening to everyone call in and speak and tell about their own story and about what's going on have all hit the nail on the head.
First of all, there's going to be phantom pain. It's going to hurt, and it's tragic. There are few things, fewer in life, harder than dealing with something that's been there for 26 years in my case, to the today, (unintelligible) my birthday, 26 years, and then having to acclimate with the pain and the learning to walk again, the stigma, the - you've got to reorganize your entire life.
And a couple - a guy that called a couple callers ahead of me, hit the nail on the head. He said a lot of people get addicted to Oxycontin or Darvocet or whatever. It's been six months, writhing in the bed going oh my leg, my leg, what am I going to do, it's never going to be the same. And it's horrible to do that. It's self-defeating to do that.
This happened to me a month and a half ago, and a week out of the hospital, I was driving my car, working, and I had a smile on my face because if you look at it as I lost my leg, it'll never be the same, this is awful, this ruined me, it will. It will stop you in your tracks, and you will never leave your bed again. You're going to be all high on painkillers playing "Halo: Reach" for the rest of your life.
Whereas if you just get out there and acknowledge this happened - and boy, if this happens, and I can laugh it off, and I can crack puns about not having a foot to stand on or really shoot myself in the foot on that one and even joke about that, you can do anything.
It's ridiculous. And I think that having a good support group, knowing the right people, talking to - whatever it takes to keep you together, if you can keep it together for yourself - you've got to realize that everyone that talks to you is almost speaking out of fear, just out of the unknown, just out of the oh my God, how did it happen? What's it like? Because I have no idea, and there's no way to explain it to them.
But what you can explain to them is that, look, this happened to me. Ryan Jerke(ph), this little idiot, shot himself. If I can make it through and I'm laughing about it and joking about it and making puns about it on Facebook, then there's not a whole lot that can stop you. The worst is over. You've got - you survived the blast, the shot, the infection (unintelligible), anything.
You've got a new lease on life. I think it's important for a lot of amputees to remember that, that, yeah, it's gone, but you're still here. And that sounds so cheesy and so chicken noodle soup for the soul I can't even put it into the right vocabulary, but it's true. You've got to keep your head up during this kind of thing.
CONAN: Well, Ryan, I wish everybody could have that attitude. I wanted to turn back to Mike LaForgia. And that sort of approach, it seems to me, will lead to positive results.
LAFORGIA: Yeah. So well said. I really commend the gentleman there that shared that view. You know, I want to jump in there, too, with - we've mentioned a number of times now joint support group and the importance of that. We should at least get one out there. The Amputee Coalition of America, let me just put that out. People can Google on that. I'm not sure if they're national. I think they pre - or close to national.
They're a great organization. One of the things they will provide is a, of course, a support group where you can go for weekly meetings and meet others that are going through the same situation, but they also provide mentors. So I can tell you the - I provide the service to new amputees, and I can't tell you the effect I can have on a new patient walking into the hospital room and to see someone who's an amputee walking with ease, you know, into the room sort of changes your whole outlook as a new patient. So definitely recommend the Amputee Coalition of America.
CONAN: And would you echo Ryan's statement about the dependence on painkillers and sleeping medication and I assume also then self-medication, even things like alcohol?
LAFORGIA: Yeah, I absolutely would. I've been lucky in the, you know, in the area of phantom pain. There have been studies that show the percentage of patients with phantom pain are higher than those that are impacted with traumatic type of injuries as opposed to, in my case, where it was an elective surgery.
So - but I - having used pain medication in the past when I had my foot surgery and the flap surgery, so I was on pain medication for a year myself. It absolutely affects all aspects of your life, and it's hard to have that positive attitude that Ryan shared when you're impacted or, you know, in a - dealing with daily medications.
CONAN: Ryan, you're going to have interesting birthdays from now on.
RYAN: You can say that again, man. You can say that again, and I'm going to have the most badass Halloween costume of anybody I know.
CONAN: Thanks very much for the phone call.
CONAN: We're talking about, well, after so many people were injured in Boston, the life of amputees. You're listening to TALK OF THE NATION from NPR News.
John Ferguson, I wanted to get back to you. How soon after surgery can prosthetics be fitted, and how do you make sure that they're fitted properly?
FERGASON: Well, the time of fitting varies greatly on what the cause of amputation was. So we're not going to begin prosthetic fittings until the skin is well healed, the wounds are closed and generally until the level of pain is under control to where pressure and manipulation of that limb can be tolerated. So that can be anywhere from several weeks to, you know, maybe three or four or five weeks, even, depending on what the healing processes are.
If you have an elective amputation and it's - everything is well controlled and the skin is in good condition, it's going to go much faster than that. If you have a trauma, especially a blast type of injury like the tragedy last week, that's going to be a good bit longer because there may be a lot of surgeries that are going to have to happen in the meantime before that limb is really even fitable, especially if the blast contained contaminants and things that can cause infection over the long term of the limb. So it can really be anywhere from a few weeks to really several months, depending on the healing capacity of their limbs.
CONAN: Here's an email we have from Russ(ph) in Punta Gorda, Florida: How in the world do people afford six legs, much less one, if they've not been in the military and/or don't have insurance?
And, Mike LaForgia, what's your situation?
LAFORGIA: Yeah. It - that is a challenge. We - you know, the insurance coverage differs. I know the woman spoke to that earlier. There are insurance plans out there that offer just a single, you know, leg in a lifetime, which is ridiculous. So there are folks out there that are fighting legislation and trying to improve it.
The - you know, running legs and walking legs are very expensive. You know, a good running leg can run $30,000. So it is something you're not going to be able to afford on your own without a strong insurance plan. So it is something we're looking to improve over time. Some of the better prosthetic companies will help you fight insurance claims and help make the case for new equipment. So, again, that's another reason to find the right prosthetic company.
CONAN: Let's see if we can get one more caller in. Edward's(ph) on the line with us from Johnson City in Tennessee. Edward, we just have about a minute left.
EDWARD: Yes, sir. My name is Ed. I just want to say this, in Boston, the amputees have just (unintelligible). Mine was a - I had to get it done for me for family history of my amputee. But what I'm saying is that the support is a big shocker. The support of your family, support of my co-workers, my friends is helping me. I'm 50 days into it, and their support is the major thing you need because you can get depressed. And like he was talking about with the painkillers and stuff like that. You can, you know, you can get overwhelmed with that and stuff and go into a deep depression whereas I have support from my family and from friends and co-workers.
And the people in Boston is now, you know, realizing, oh, God - you know, I don't have this no more. I can't, you know, and things running through their minds. Same thing happened to me. It's just - you got to just think positive because if you don't think positive, you will not move on and that's the major thing. It's got to be that way because, you know, I know my life right now is so different but I do have that support. I mean, you know, call a friend up or something say, you know, I'm down on this. Yeah. I got to do. How can I go through this? You know, he talks to me. He says, you know, I've been there. Military retired. I've seen usually what happens and things of that nature. And that's why I'm saying you have to have that.
CONAN: Edward, thank you very much for the advice, and our thanks as well to Mike LaForgia and John Ferguson. This is TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.