Occupational Therapy Offers Help and Hope for Lymphedema Sufferers

Phelps Health Marketing Director Paige Heitman and Digital Marketing Coordinator Kayla Marsala talk with Kathy Harrison, an occupational therapist with Phelps Health Outpatient Therapy Services, about lymphedema on the Ask the Professionals radio show.

Kayla Marsala: Good morning, everyone, and welcome to the Ask the Professionals radio show with Phelps Health. I am Kayla Marsala, co-hosting with Paige Heitman.

Paige Heitman: Good morning.

Kayla: Today, we are talking with Kathy Harrison, an occupational therapist with Phelps Health. Welcome to our show, Kathy.

Kathy Harrison: Thank you.

Kayla: To start, can you tell us a little bit about why you chose a career in healthcare?

Kathy: I chose a career in healthcare because I really enjoy working with and talking to people. As far as getting into occupational therapy, I didn't even know this profession or physical therapy existed until I was a junior in high school. I had planned to go into nursing. I was introduced to both professions on a field trip from school, and I thought, "Wow, that's right up my alley." [After that field trip,] I sent my letter of intent to Mount Mary University in Milwaukee, and I was accepted. It was the only occupational therapy program in the city of Milwaukee at the time, with just 25 students in the class.

Kayla: Thank you for sharing, Kathy. Phelps Health is lucky to have you. That brings me to my next question. Why did you choose Phelps Health specifically?

Kathy: I am originally from Wisconsin and was looking for a change. I spoke with a recruiter who had called me for references on a former student of mine. He was placing somebody in St. Louis, and I asked him if he did permanent placements, and he [confirmed that he did.] I asked him what was available in Missouri, and then I interviewed at Phelps Health. I [also] interviewed at the University Hospital in Columbia, and had a third interview, but declined it, because I ended up choosing Phelps Health.

Paige: What was different about Phelps Health that made you decide that you wanted to come work here?

Kathy: Well, number one was the salary. And it just seemed like a really good fit because I was coming from a small community hospital in the Milwaukee area. The housing market here was good, and the schools were good, so this [Phelps Health] was my choice.

Kayla: That's awesome.

Kathy: And I've been here for 30 years.

Paige: Wow, that's amazing, and at Phelps Health the entire time?

Kathy: Yes.

Paige: That's incredible. We're lucky to have you.

Kathy: Thank you.

Kayla: Definitely. So, today, we are going to be talking about occupational therapy and lymphedema treatment. Before we get started, though, can we discuss what occupational therapy is?

Kathy: Occupational therapy [or OT] is a program. We do not find people jobs. As long as I’ve been in the profession, we still hear that, and we continue to say, "No, they don't need OT, they don't need to go to work." So, occupation is defined as the “jobs” that we do throughout our lives. Babies have jobs, toddlers have jobs, school children, etc. OT is to learn and do the things you're supposed to do at different ages and stages throughout your life. We help people to become more independent, whether they have a permanent disability such as a stroke, a spinal cord injury, that type of thing. We also help them find adaptive equipment to gain independence in their lifestyle.

Paige: When you say adaptive equipment, what does that mean?

Kathy: It can mean simple things like crutches, canes or dressing aids, such as a device to help you put on your socks without having to bend over. For somebody who is unable to use their hands due to a spinal cord injury, [it could involve] different bracing or adaptations that we can put on their hands so they [patients] can actually hold something, bring it to their mouth and eat their food. Those types of things.

Paige: Amazing. So, what types of services does Phelps Health Outpatient Therapy Services offer to our community?

Kathy: We see all kinds of people in our community. We engage with people throughout the community at different events, like health fairs. [Most importantly, though,] we help patients to be able to get around the community and do what they have done for most of their lives, before their injury or illness.

Kayla: Does occupational therapy take place in patients’ homes, or do patients come to a Phelps Health facility?

Kathy: We do have therapists who go to homes through Phelps Health. I personally do a lot of ergonomic assessments or workstation assessments for people unable to work or [suffering from] pain at their job sites. I assess the job site and make recommendations for new equipment. Mostly, it's changing desks, changing computer placement, keyboards, etc. Chairs are also extremely important for people who are sitting throughout the day.

Kayla: You mentioned earlier where you went to college. What kind of training do occupational therapists need?

Kathy: There are two types of occupational therapists, just as there are two types of physical therapists. We have our certified assistant program. That is usually a 2-year program, plus clinical rotations where students go into various facilities and act as a therapist under the supervision of another certified assistant or an occupational therapist. The occupational therapist is now a master's degree program, and there are even some PhD programs.

Kayla: Do patients need a referral to be seen by an occupational therapist, or can they just walk in and decide they want to make an appointment with you?

Kathy: Usually, we request that they get a referral from a physician.

Kayla: OK. Now that we know a little bit about what occupational therapy is and its role in patient care, we're going to explore our next topic, which is lymphedema. Kathy, can you first tell us what lymphedema is?

Kathy: Lymphedema is a disability that involves the lymphatic system. It's usually characterized by swelling, sometimes severe, that does not go away by itself. There are two types of lymphedema. The first one is primary lymphedema, where you're born with an inadequate or incomplete lymphatic system, and it's characterized by swelling in a limb or another area of the body. Secondary lymphedema is caused by conditions like breast cancer, colon cancer, those types of things where you've had a surgery, and lymph nodes have been removed. Many of our cancer patients also end up having radiation treatment. Radiation also injures the tissue around the surgical area because it burns, and when an area is disturbed through surgery or through radiation, your lymphatic system is not complete in that area. Lymph nodes are like mini-factories that process the fluid that flows through the body.

I was discussing what lymphedema was with one of my patients several years ago. He told me, "Oh, my doctor said it's the body's trash collector." Basically, that's true because the lymphatic system will pick up cell debris and all kinds of stuff that's sloughed off into the body. It also picks up bacteria that enters our body, say through a wasp sting, a scratch from a cat, a bite, those types of things. You can get bacteria from anything. Once it gets in the body, it can grow. So, the lymphatic system picks it up, takes it to the lymph nodes where it's processed, and most of the time, it eventually exits through the body.

Paige: Kathy, does everybody have the same lymphatic system, or do genetics determine whether or not I have a healthier or less healthy lymphatic system? What does that look like?

Kathy: Everybody has the same lymphatic system, except in cases with patients who have primary lymphedema and have a missing component. Sometimes it's a leg; sometimes it's an arm that just swells for no reason. Many years ago, I had a [primary lymphedema] patient who worked at Fort Leonard Wood and was getting married. She always had one foot and leg that were bigger than the others. She went through the program and for the first time, was able to buy a pair of shoes that were both the same size.

Paige: Wow.

Kathy: I took advanced training in 2006, and one of our patients who we treated at the time was a 6-month-old with primary lymphedema in both legs.

Paige: So, what does the treatment look like for babies?

Kathy: It's actually the same treatment that we do for the adults. It is mostly massage. It's a light massage; we want to just stimulate the lymphatic system. It basically starts right below their skin. I always use the analogy of when it rains, water washes down the roof and goes into the rain gutters and eventually into the downspouts. Our lymphatic system is built like that. It's first a watershed, then it starts to form vessels so it can direct the fluid. Eventually, it forms actual vessels that carry the lymphatic fluid, and their first target is the lymph nodes. We have several lymph nodes in the neck, under the arms, in the front of the shoulder, in the groin, behind the knee, at the side of the elbow and the ankle, and both the front and back of the ankle. Those are the areas that we target. We stimulate those areas through massage, and then we start bringing the fluid up toward the closest lymph nodes.

Paige: Kathy, can we talk about compression socks? I see a lot of people wearing compression socks or sleeves on their arms and am guessing they have lymphedema. What's the value in that, and why is it helpful for them?

Kathy: It's helpful because it provides light compression. With lymphedema, we don’t increase the pressure beyond more than 20-30 milligrams of mercury. All packages are rated, whether you're buying a stocking, a sleeve or a glove for your hand. They are rated from 10-15, 15-20, 20-30, 30-40, 40-50 milligrams. So, the higher the number, the more pressure on the limb. When we took the initial [lymphedema] program, it was strongly advised that we don't go over 20-30 milligrams of compression, even in the legs. A lot of people want to get the stronger ones [thinking] it will do more, but actually it doesn't. It puts too much compression [on the area] and squashes those initial lymphatics. [Several years ago,] occupational therapists were taught swelling massage, where we would start at the end of the limb and move up toward the shoulder to get rid of the fluid. All we were doing, however, was inundating that whole area with too much fluid that could not be processed at one time. Now, we always start closest to the lymph nodes and work our way up. We're always working up the arm, up the leg, up the trunk.

Kayla: You had touched earlier on primary and secondary lymphedema. I understand that primary is something you are born with, but can you talk a little more on secondary lymphedema and what causes it?

Kathy: A lot of our patients [with secondary lymphedema] are post-cancer patients. We do get some who are still being treated [for cancer] because sometimes lymphedema is extremely aggressive, and you get a lot of swelling initially. Sometimes it's from treatment, such as radiation therapy. We also see a large number of vascular patients, people with lower extremity swelling, where their legs are purple or brown, big and swollen. That is also secondary lymphedema. The lymphatic system flows pretty closely to the vascular (circular) system, the veins that bring the blood around the body. Sometimes, either from aging, obesity or other problems, the blood doesn’t flow up the leg properly. The discoloration in the lower legs, then, is basically dead blood cells that have passed into the tissues.

Paige: This might be kind of self-explanatory, but is it painful?

Kathy: It can be. A lot of people have significant pain with it, especially the bigger you get. Your arm is heavy. Your leg is heavy. You can’t lift it to get on the bed. You can’t lift it to put your clothes on or get things out of the closet. So, by reducing the size of the limb, patients have less discomfort, and they have more mobility and independence.

Kayla: When you say reducing the size, that's when you're massaging a limb, right?

Kathy: Yes.

Kayla: So, whenever you massage it, where is the fluid going?

Kathy: The fluid is going back through the body, through the lymphatic system. The fluid is then processed by the liver and kidney and eventually exits the body.

Kayla: So, you're helping the body do its natural process by massaging it?

Kathy: Yes, we're stimulating the lymphatic system.

Kayla: OK, that makes sense.

Kathy: We also use compression pumps with our patients. In patients who have severe lymphedema or prolonged lymphedema, who need an extra boost at home, they can use a compression pump once a day. Compression pumps have been around a long time. Before the lymphedema program was around, doctors used to order the patient a pump and tell them to get a sleeve. That will work temporarily. If you're just squashing and moving the fluid, it's going to bring the limb down for a little bit, but it'll come back.

With the lymphedema program, [our goal] is to move fluid through our massage. There are also a few guidelines. We call them our 10 commandments, or so, but there are actually 13 points. They have to do with diet, watching what you eat. You don't want your weight to fluctuate all the time, so avoiding salt helps to decrease swelling. Avoiding sweets all the time can also help taper weight gain. Once you’re into a compression garment, if your weight keeps fluctuating, the garment isn't going to fit right. Or you may have to keep buying them, and they're not cheap. You will want to avoid being scratched, scraped or bitten by animals. You also want to avoid being burned, because that's another access point for bacteria to get into your skin, as burning can break the skin's surface.

Paige: What about flying? Do people with lymphedema experience more swelling whenever they fly? Should they wear their compression socks on flights?

Kathy: Yes, they should definitely wear their compression garments. It's been proven that a lot of lymphedema patients first developed lymphedema after an airline flight. It has to do with the change in air pressure.

Paige: So, is that where secondary lymphedema often comes from? If I have a job where I am traveling frequently and am constantly on flights, does that put me at risk for lymphedema?

Kathy: It can. People fly all the time post-surgery, post-cancer treatment, and they don't get lymphedema. There's really no rhyme or reason as to who's going to get it, and who's not going to get it. We just know that if you've had lymph node removal or if you've had radiation therapy, you're going to be at a higher risk.

Kayla: We’ve discussed what lymphedema is and what can cause it, but how do you diagnose it? How do you know if somebody has lymphedema?

Paige: Or swelling to the point where it's concerning?

Kathy: The basic rule is if you have swelling more than 2 centimeters greater in your affected arm versus your other arm, that is a point for lymphedema. So, when our doctors or nurse practitioners see a patient, and they notice swelling or the patient complains of swelling in an area, oftentimes they will refer the patient [to us.] When the [lymphedema] program first started back in 1996, we saw a huge portion of patients with excessive swelling, to the point where they didn't have natural arm creases; they had actual fissures.

If lymphedema is left untreated, and the swelling keeps getting bigger and bigger, it’s no longer soft. It’s like if you sprain an ankle, and you push down on it a little, it'll leave a little mark from your finger. That's called pitting edema, and it changes if the fluid keeps coming in the area. It becomes more fibrotic (stiffer), more like scar tissue. The outside skin surface looks pitted. It doesn't look natural; it's hard because the fluid duct sits on the tissue. Lymphatic fluid is rich in proteins, and if the fluid sits in one area for a while, the proteins will attract more fluid and water, and that area will get bigger and bigger. If the fluid sits there long enough, that liquid portion goes away, and it actually becomes increasingly tough, much like scar tissue.

Kayla: It sounds like lymphedema isn't something that you can help treat on your own; you definitely need to see a professional.

Kathy: You need to go to a professional, because we're getting referrals early on in the lymphedema diagnosis. We teach them what to do on their own and what to look for. We also teach them the commandments so that they can prevent exacerbations or worsening of their condition.

Kayla: So, what do other treatments look like? I know we've talked a lot about massaging. Are there other treatments, other ways that you help lymphedema?

Kathy: Basically, education is the biggest one, but also using the compression pump. If I have a patient with both legs affected, we really don't have time in one treatment session to fully massage both legs. [In this case,] we will work on one leg, put the other leg in a sequential compression pump and then use compression bandaging. [This bandaging] is a light foam wrap, and that's followed by a non-stretch bandaging up the limb. It helps to decrease the amount of fluid that can build up over a period of time. It also prevents the swelling following the treatment, after you're up and down walking or doing your activities during the day. [The bandaging] can help keep some of the fluid at bay, because muscle contractions help to move the fluid. If you lay down in your bed all night, that fluid is going to seek the lowest part in your body or that affected limb, and it will swell overnight. That's really common for most people. They get up in the morning with really stiff hands, because of this swelling. So, by using compression garments and bandaging during the treatment, it helps decrease the fluid and soften the tissues. By the time the patient is done with their treatment, they're better able to take care of the issue on their own.

Kayla: Is lymphedema curable? If someone goes through the program and the lymphedema goes away for a period of time, is it going to come back?

Kathy: It can, but I’m not saying it's going to. It depends on how consistent that person is. I tell my patients that it's like having arthritis. Once you have it, you always have it, but you can control it.

Kayla: So, I'm going to back up a little bit. Earlier, you had mentioned diet, and that cutting out extra salt and sweets could help lymphedema. Are there any specific diets that you recommend for patients to follow?

Kathy: No, we don't have a specific diet program. It just depends on your lifestyle, but you do want to be conscious of constantly flipping your weight up and down.

Paige: And that's because of the compression bandages, right?

Kathy: Yes.

Paige: So, if somebody has lymphedema in one extremity, and they start wearing compression bandages for it, would there be any circumstance where that lymphedema would move into a different extremity? Does that happen, and what does that look like?

Kathy: It depends on where the injury or the problem occurred, but yes, it can be common for that fluid to start showing up in the opposite extremity. Once we start stimulating an area, say the right leg, we take measurements every time the patient comes in, and there are several measuring points on the legs and the arms, and we compare them. So, if a patient shows up with a right leg problem, and we also notice a little swelling in the left, by working on one leg, it's actually going to stimulate the entire lymphatic system throughout the body. We will notice changes, even on the “good extremity.”

Paige: Positive changes, I'm assuming?

Kathy: Yes. So, we're not pushing the fluid from one area into the other. When we're working on one specific area, it does affect the entire body.

Paige: And you’re helping the body process what it can't naturally process, correct?

Kathy: Yes.

Kayla: To contact Phelps Health Outpatient Therapy Services, please call (573) 458-7140. Again, do patients need a referral from their primary care provider to see an occupational therapist?

Kathy: Yes, they do. But we also get several referrals from oncology; from ear, nose and throat doctors; and from podiatrists in the area. Basically, anytime you’re seeing a provider for anything and notice swelling, [we encourage you to] ask about it.

Kayla: This morning we have been speaking with Kathy Harrison, an occupational therapist with Phelps Health. Thank you so much for being here, Kathy. We’ve learned a lot from your lymphedema expertise.

Kathy: Thank you.

Kayla: If you missed part of the show or would like to listen to it again, please visit phelpshealth.org.