I got yet another email from a patient about her experience in a wound center. She’s got many complex medical problems, but she’s a retired nurse and has a good sense of what works to heal her recurrent lower extremity ulcers. She’s wheelchair bound but manages to live independently despite heart failure and other challenges. She wants to partner with her wound care physician to get the treatment that works best for her. Unlike many patients, she is totally committed to wearing compression bandaging and using her lymphedema pump so she should be easy to care for! I am going to name some brand names because it’s the only way to tell the story accurately. I am not trying to push these brands. I am trying to convey why she’s frustrated.
She has responded to Coban-2-layer wraps in the past. She has found them comfortable and they heal her ulcerations. However, this new clinic is using regular, high stretch Coban over gauze instead of 3M’s Coban-2 layer kit that’s designed for compression bandaging. Coban 2-layer is not a high stretch product. I see this issue OFTEN – with hospitals or nursing agencies substituting regular, high stretch Coban for the Coban-2-layer compression wrap that was ordered. The result can be catastrophic. I don’t know if this is done because clinicians or home nursing agencies do not understand that Coban 2-layer and Coban are different products, or because the 2-layer wrap is more expensive and they want to save money. However, this is a big problem for which I don’t have a solution other than recommending the patient ask for an Unna’s boot, since that would be safer than high stretch Coban! Also, the patient loves her Lympha Press pump and uses it faithfully. It’s six years old and has some wear and tear from constant use. She’d like to replace it, but the new wound center will only assist her in obtaining a different brand of pump. She is asking me why the wound center would be married to a particular DME and I don’t know what to say.
Using a high stretch compression instead of a short stretch wrap can certainly injure her, so she’s right to be worried about that substitution. Switching from one pump to another might not be a problem, but why should a clinic insist that only one device is the right one if the patient has a preference? I don’t know what to tell her about these issues.
I hate to complain about doctors. I know what lymphedema pump I want to use but I am being told the [name omitted] pump is better because it is “smaller” and I “should be able to use it.” However, I have used the Lympha Press pump for many years. I am happy with the device and their customer service. My previous center was happy to help me obtain whatever pump worked best for me. Unfortunately, this wound care facility’s rules are different. They only want the patient to use [name omitted] pump. The wound care doctor refuses to do any documentation about lymphedema. Instead, he has a “lymphedema team” who does all the documentation. But his “lymphedema team” will not even consider the Lympha Press pump that I know works for me. What’s up with that?
Now for my issues with the nurses and compression wraps. I requested Coban 2-layer because that’s what I tolerate the best. They use regular Coban. However, when you stretch regular Coban as far as it will stretch to wrap it around the leg, it is too tight – it hurts and I think that is not good for me. I’ve even brought my own Coban 2-layer to the clinic in order to try to talk them into using it. This is all so frustrating! It seems like a place called a wound center ought to be able to partner with me when I am trying to do all the right things to manage my edema.”
Anonymous (but real) patient
Dr. Fife is a world renowned wound care physician dedicated to improving patient outcomes through quality driven care. Please visit my blog at CarolineFifeMD.com and my Youtube channel at https://www.youtube.com/c/carolinefifemd/videos
Hi Dr. Fife,
Thank you for this post and it is an unfortunate, all-to-common scenario. Not for malintent, but lack of knowledge and awareness which negatively affects the patients. This is a good example of the patient knows best what works and what she can do to manage her condition. I suggest she goes directly to LymphaPress and see if they can help her. Like most pump companies for lymphedema, they are geared toward the patient and have the patients best interest in mind. They may be able to help her directly. I always say, it never hurts to ask. This is a prime example showing how far we have come yet how far we have left to go regarding compression, education, lymphedema and wound management. Thanks for all you do and your ongoing advocacy.
Heather Hettrick (Barnhart)
Hello Dr. Fife,
My husband originally got his lymphedema compression system through private insurance, which specified which durable medical equipment (DME) provider he had to use. That provider gave us no choice—my husband was given a less expensive Tactile Medical Flexitouch Plus system. Using it regularly has brought my husband’s lymphedema under control, and he has had much fewer wounds and NO cellulitis hospitalizations since then.
That being said, if we have a choice next time, we will dump the Flexitouch Plus for a LymphaPress system.
A. The Flexitouch body core and 2 leg wraps use Velcro. They each have to be manually fit every time the unit is used. Although my husband can walk by himself, he is not very flexible. He is physically unable to
(1) fit all the Flexitouch wraps to himself and
(2) remove them by himself.
Fortunately, I can do all that for him.
However, it sounds like the retired nurse would have the same difficulties using Flexitouch wraps by herself. However, the one LymphaPress garment automatically compresses itself to the patient’s body. She can easily zip herself in and out of it without a caregiver.
B. The Flexitouch system has 7 different large, awkward hoses running from the 3 compression garments. They have to be individually snapped into the pump.
Setup for my husband’s compression session takes almost 15 minutes.
Does the patient have original Medicare with a Medigap plan? That should give her the flexibility to get the LymphaPress. Per https://lymphapress.com/health-plans/:
“Lympha Press proudly partners with many health plans, including Medicare, Medicaid, private health plans, and Veterans Affairs.”
Unfortunately, if the retired nurse has Medicare Advantage, she MUST use the DME provider specified by her insurance company. Her wound care specialist would have no choice in the matter. To get coverage for the more expensive LymphaPress unit, she would have to switch back to original Medicare with a Medigap plan at the next open enrollment opportunity, which will be for the 2024 coverage year.
If the patient has original Medicare with a Medigap Plan, she should write a protest letter to her provider, his boss, AND the owner of the wound care clinic. The letter should contain the comparison between the two compression systems, showing clearly why she shouldn’t get anything but LymphaPress.
Good luck and God bless!
Thank you for sharing this information and thanks to Annette and Heather for their comments.
I can understand, even if I don’t agree with the rationale, how a HHC or WCC get’s pressured into using less expensive products. That being said this should not come at the expense of the efficacy or safety; such as in Coban vs Coban 2 situation stated above.
Regarding the patient’s comments about her Lymphedema pump. It’s unclear to me why a provider would discourage a patient from using the product that the she prefers. Free choice is a patient’s right and one that needs to be protected. That being said, we (Lympha Press) are happy to help her obtain a new device if her current one is no longer working for her.
Eric Ansart – Lympha Press President
Hi Dr. Fife,
Sadly, it is not only the wound care centers that do not listen to patients, it is “highly respected” surgeons!
I was very active when I was young and into my career playing tennis, water skiing, show skiing, running 8 miles a day, hiking and windsurfing. This activity took its tole on my knees and at the age of 50, I needed a Total Knee Replacement (left) due to a hiking injury I suffered when I was 17 years old.
I consulted my Orthopedic Surgeon here in Los Angeles and because of my worsening Lymphedema, he felt that he did not have the skill needed to do my surgery. I totally respected him for letting me know this because I know it takes skill and a bit of luck for a lymphedema patient to heal.
I then asked for a recommendation from my Lymphedema Doctors at Stanford University and he gave me the name of a surgeon at Stanford who had successfully replaced a few knees in his lymphedema patients. I made an appointment for this surgeon and surgery was scheduled after the initial examination.
During the initial examination, we talked about CDT and that I would need to go through this just before the surgery. He would not give me the prescription for this physical therapy so I got the prescription from my Endocrinologist at Cedars Sinai. I then requested a prescription for Lymphedema treatment post-op along with PT for the TKR because I knew my legs would swell significantly and because of the swelling, I would not be able to get the range of motion needed to have a successful total knee replacement. His response was to ask his PA for this prescription.
I called, asked his PA for the prescription, and she said that she would give me the RX for PT during the pre-op appointment. I let her know that the Lymphedema Therapists in Los Angeles were booked 3 months out and because of this, it would be virtually impossible for me to control my swelling myself post-op. I pleaded with her to give me the prescription and she would not because that was not the way the Orthopedic Surgeon did business. I informed her that it took me 3 months to get my CDT appointments pre-op so that my legs were at their smallest for surgery. This did not change her decision and she would not give me the prescription until the pre-op appointments. I was mad. Ok, I’ll run with it. what could go wrong except a huge infection, amputation and death.
My point here is that a Lymphedema Patient should not have to beg for a prescription for CDT especially after a major surgery in the affected limb. The surgeon cancelled the surgery 1 day before surgery because he felt the risk was too great. No duh! The risk was too great because he would not give me the needed non-narcotic prescription to make this a successful surgery.
When I go to Germany to have my reduction surgery, maybe I can also have my knees replaced at the same time. I have lost respect for the Lymphedema Specialist at Stanford for recommending this surgeon and having me jump through all of the hoops just to have the surgery cancelled 1 day prior. Yes, I had to fly to the appointments and get a hotel room for each night I was in Palo Alto for those appointments. Hotel rooms were $250-$300 per night. Stanford did not pay for the out of pocket costs that I incurred.