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.

Dr Fife,

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

Thoughts, anyone?