Pretty in Pink Boutique Owner Pam Ludwig Talks Lymphedema Awareness Month

From Pretty in Pink Boutique

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Please tell us a little bit about yourself.

Pam Ludwig: I’m Pam Ludwig. I’m the owner of Pretty in Pink Boutique, founded in 2005. We have four locations in the Middle Tennessee area: Franklin, One Hundred Oaks, Hendersonville, and Murfreesboro. We are a combined business. We are a breast cancer boutique providing all necessary post-surgery items after breast cancer and then also a compression garment and lymphedema specialist.

What inspired you to start offering compression garments?

PL: We started as a breast cancer boutique in 2005, if you’ve heard this story before, as a love letter to my mom who did pass away from breast cancer. My mom did not have lymphedema–she did not develop lymphedema after her breast surgery. My mom, unfortunately, only was with us for 10 months after her diagnosis. I don’t know if she didn’t have enough time to develop lymphedema or maybe she just was one of those lucky ones who was not going to get lymphedema.

As I learned as we launched this business, in order to serve all the needs of a mastectomy patient or a breast cancer patient, we did need to start providing upper extremity compression garments. As most of you should be aware, lymphedema can develop after we remove a lymph node under the axilla area, under the underarm, after breast surgery because surgeons take that part of the tissue in order to determine whether or not the breast cancer has spread. The first place breast cancer will spread will be to the lymph nodes, out of the breast and into the lymphatic system. What can happen after that procedure is that some women can develop swelling in their arms or hands or truncal area related to that. We started offering compression sleeves simply, again, to make ourselves a full, well-rounded breast cancer boutique, and what we found very quickly was that there was really not a lot here in the middle Tennessee area for those women who had that swelling issue. We’re actually very, very blessed here in Nashville we have a number, I want to say 18-20, well-qualified lymphedema therapists. These are physical therapists that have specialized training in lymphedema treatment. We’re very lucky to have a number of them in middle Tennessee. Over the years we’ve started to partner with them, develop relationships with them and discovered that we really love lymphedema and we really love serving that population. Over the years, we started lightly providing compression arm sleeves and compression gloves for those mastectomy patients and then we started realizing there was a whole different population out there who also had swelling needs in terms of people with veinous issues, simple obesity, burn patients, a lot of reasons why somebody would need to wear compression so now we see any type of patient who needs compression. We’re not just a boutique for women, we have male patients, we have pediatric patients, anybody who would need a garment for swelling. We partner with those physical therapists who order those garments and the doctors who prescribe those garments and then we provide anything anybody would need for compression.

What is lymphedema?

PL: So, what is lymphedema? Here we are in Lymphedema Awareness month, the month of March every year is Lymphedema Awareness Month. What we want to do is just bring to light what lymphedema is and how it can be avoided and how it can be treated.

Lymphedema is actually a swelling condition that occurs when your lymphatic system, that covers your toes up to your head, is not working optimally. This can occur what we call primary lymphedema, you can be born with it, where maybe part of your lymphatic system isn’t working properly and it causes a swelling condition in one of your limbs, but mostly what we see around here is secondary lymphedema. Secondary lymphedema is caused by something else, not something you’re born with. Around here, secondary lymphedema usually presents after someone has had surgery. Breast cancer surgery of course where they have removed axillary lymph nodes, any type of other oncology surgeries that affect lymph nodes in the groin– we can get a swelling condition in the leg after lymph nodes in the groin have been removed. 

Compromising the lymphatic system does not allow the lymph flow to work optimally. When that happens you get a backup– I like to use the analogy of a traffic jam. When you have a six-lane highway and all of a sudden we make that highway go down to three lanes, we put orange barrels in the other three lanes, then suddenly you’ve got the same amount of traffic trying to get through a smaller space. So what happens? It backs up. That’s exactly what happens to your lymphatic system. So those seven lanes of traffic when those lymph nodes were not compromised or removed, everything’s moving and everything’s working. When we compromise or we take those lymph nodes out or we dissect them, we’ve not made them ineffective to be draining that fluid so now you have three lanes of traffic, the same amount of cars trying to get through, and it’s just backed up. What do we have to do in that situation? We have to work it out, we have to work out that fluid. That comes in the form of seeing a lymphedema therapist and getting complete decongestive therapy and, of course, wearing compression garments after that therapy is complete.

Lymphedema is usually not curable. It is a chronic condition, but don’t let that deter you because it is completely manageable. I know lots of people who embrace their lymphedema, their need to wear compression garments. As you can see, they come in lots of fun, cute patterns now. People just wear them as they would any sock and it’s not even noticeable as being any type of medical garment. You need to follow the program to get that fluid worked out and then you’ll see that you can live a happy life with that.

What have you noticed in changes to how lymphedema has been treated over the year? What’s better? What’s the same?

PL: I think that lymphedema treatment over the years has certainly– I would say the treatment itself, there’s a gold standard of treatment, what we call complete decongestive therapy, which is manual lymphatic drainage massage by a certified lymphedema therapist along with self-massage techniques that they’re taught at home to help manage their own care along with the dispensing of compression garments. Those items, that process of treating lymphedema has not changed. That’s still the gold standard of how we want to treat a patient with lymphedema and swelling.

What has changed is the products on the market, for sure. There’s just a gambit of amazing products out there that have made lives easier for the patient and also for the therapist treating that patient. Also, we’re seeing many, many more physical therapists go to get trained for lymphedema therapy because that’s not something that they’re trained on as part of their doctorate in physical therapy, it’s actually a separate certification. They can come out of physical therapy school, be a physical therapist, and be certified and trained to treat lots of conditions but lymphedema is not one of them. It is a separate certification. They have to go through that and I’ve seen more and more of those people show up to the space here. Also, there’s now surgical techniques that are being utilized in a lot of the larger cities. There’s still a lot of school of thought about that, a lot of research being done about that.

It’s just becoming more and more talked about. I think the main thing I’m seeing the difference in lymphedema, we’re now talking about it more whereas before I could say to someone, “Well we provide lymphedema garments,” and everybody says, “What’s lymphedema?” and they call it all kinds of other things. I think the fact that we’re talking about it– lymphedema has not become more widespread. It’s always been there, but recognizing it, naming it, diagnosing it, and treating it has become more prevalent, for sure, over the last 8-10 years we’ve really seen a big change in that.

What is a piece of advice you would give to someone going through treatment right now?

PL: Well, the first piece of advice I would say is get treatment. A lot of times, especially women after breast cancer, might have a little bit of swelling and think it’s no big deal or think it’s gonna go away but that can really creep up on you. The arm is tricky because it doesn’t necessarily affect the fit of your clothes until it’s kind of well-progressed, unlike your leg swells and your pants don’t fit right, your pant leg doesn’t go on your leg properly. That’s harder to detect in a woman so I always tell somebody that if you feel tightness or heaviness in your arm, in the extremity where you had the breast surgery, then certainly let your oncologist know immediately, any doctor but certainly your oncologist, they’re gonna be the most qualified to refer you out to a lymphedema therapist.

Also, a big myth is that people come in here thinking I have swelling therefore I need a garment. Compression garments, elastic compression garments do not treat swelling, they just help maintain the limb where it is. You need treatment first. When we get somebody who comes in with a swollen arm and say I need an arm sleeve, we refer them back out to treatment to get that swelling reduced. If they’re going through treatment what I would recommend first and foremost is complete the treatment. Go through the whole process. It may seem like in the beginning it’s not making a big difference but all of a sudden you’ll see every time you go it builds upon itself. It will get better and better and you’ll start to notice your arm swelling has gone down or you can see your ankles again. It makes a huge difference if you just stick with the program because, again, the program is well-developed. It’s an old program, it’s an old protocol, it’s well-developed, and we know it works.

Stick with the program. Certainly go find yourself a certified lymphedema therapist, that’s very important. They usually have extra letters past their name but you can always ask, “Do you have a certified lymphedema therapist on staff?” Of course, you can always come to us. We have a whole list of those people and can find somebody close to where you live. You want to complete the program, you want to make sure you go with a physical therapist that actually knows how to treat lymphedema, and then you absolutely want to go and get your garments.

As soon as you are decongested, as soon as that swelling has gone down, you want to make sure you come straight to us to get your garments right away. Sometimes that can be a process when we have to order things for you, maybe if you’re custom we have to wait 10 or 14 days to get those items in and we don’t want you to swell back up in that process. As soon as your physical therapist says you’re ready to be fit for garments, we need you to contact us so we can get you on your way.

Can you tell us a little bit about the Lymphedema Treatment Act?

PL: So, here we are in Lymphedema Awareness Month, which is very fitting to talk about the Lymphedema Treatment Act. This is a bill that has been in Congress for years. There’s been a  grassroots mobilization started by a mom in North Carolina whose child was born with primary lymphedema. When he needed compression garments as a toddler, she had a difficult time getting her insurance to cover that. She actually has mobilized a national grassroots movement to get an act passed where lymphedema garments are mandated to be covered by insurance. That actually just passed as part of a larger bill in Congress but it did just pass US Senate and Congress and is now going to become a bill.

What does that mean for you who has medicare or maybe an insurance company that doesn’t cover compression garments right now? What that means for you is starting in, I believe, January of 2024 when the law actually goes into effect, because as most of you know when a law is passed it doesn’t become in effect immediately, they have to set an effective date. So in the meantime, between now and January 2024, there is going to be a whole group of people, lobbyists if you will, who are communicating with the Center for Medicare and Medicaid Services to discuss what the pricing reimbursement will be for those garments, talking about how important it is that quality compression garments are provided over some junk you could find on the internet. All of those things have to be discussed. They have to sit around a table and figure out what all of those reimbursements are going to be. Once they figure that out we want to make sure we can still be able to provide those quality compression garments to people that we’ll still get covered by insurance. When that happens, hopefully January of 24, then our medicare patients will be able to get their garments billed to insurance. It’s a very exciting time in the lymphedema world and again, a great testament to what literally grassroots, a small group of people that became larger, can make such a difference in making a positive impact on the world. Don’t overlook that for sure. 

How can you find compression garments?

PL: How can you find compression garments online? Well, here’s the number one thing I want people to understand. Compression garments do not have a regulatory body (FDA, USDA, anything like that). There’s nothing out there that is making sure a compression garment is actually the compression that it states that it is. I could tell you right now my shirt sleeve is 30-40 millimeters of compression, we measure compression garments in millimeters of mercury. So I can tell you right now this is a 30-40 arm sleeve simply because I said it is. There’s nobody out there to dispute that. There’s no regulatory body to tell me you can’t say that. That’s very concerning.

Actually, if you Google compression sock, or put it in Amazon. If you want to buy compression socks, put in the Amazon search bar ‘compression sock’ and you’re going to get over 20,000 hits. If you put in the search bar ‘medical grade compression socks’ you’re going to get over 2,000 hits. You want to be very, very careful that you’re always partnering with someone who knows what they’re talking about–a lymphedema therapist, any certified fitter at Pretty in Pink Boutique–to make sure you’re getting quality medical-grade compression. We’re a preferred Juzo dealer, that’s our main compression line that we offer. We do offer a few others but that’s our main product line because Juzo is an over 100-year-old company. It was been producing quality medical-grade compression for over 100 years. You really want to make sure you’re getting the right thing.

If you lay two socks out next to each other, you can see immediately what’s quality and what’s not. You just need to be very careful because if you get the wrong type of garment or a garment that doesn’t do what it says it’s going to do or it doesn’t have graduated compression like a medical-grade compression garment would–meaning that the compression’s tighter here and it’s a little less, a little less, a little less as you go up the limb, same with the leg, tighter at the ankle and a little less as you go up the thigh– if you find a garment that doesn’t actually have graduated compression, because like I mentioned nobody’s checking if it does, you could actually harm somebody. You could have a garment that’s too tight at the upper leg and looser at the ankle, which is the exact opposite of what we want in order to get that fluid to move.

I always really caution people. They’ll say things like, “I found some compression socks online. They’re much cheaper.” Yeah. Because they’re not quality medical-grade compression garments. The patients that we see here are patients that need medical-grade compression garments. If you simply just want socks to boost your veinous system or maybe you’re a nurse and you work on your feet all day, sure there are some lesser quality products that might suffice for you but any patient that we’re going to see at Pretty in Pink Boutique need quality medical-grade compression garments.

Do all compression garments require a prescription?

PL: All compression garments, all medical-grade compression garments do require a prescription Here at Pretty in Pink Boutique we require a prescription for all compression garments. That’s because we could harm you, if we put the wrong thing on you, if we put something on you the doctor didn’t order, you might have underlying medical conditions that we’re not aware of. We do have to have a prescription to make sure we don’t harm you. You could have kidney disease or arterial disease and all those things could potentially be exacerbated if we put you in compression garments when you shouldn’t be. For sure, you want a prescription. Also, a prescription is what makes it billable to insurance. Medicare, unfortunately, does not cover compression garments. The Lymphedema Treatment Act did pass and we talked more about that. Right now, commercial insurances do cover compression garments so a prescription would allow that to be billed.

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