Lymphedema-Marlene Stories-Sleeve
Marlene's Lymphedema Sleeve

Marlene and her daughter Cecelia (lives with Marlene on the reservation) are at the tribal clinic. Marlene is getting a gentle massage to help drain the extra fluids trapped in her arm. Patty, the Nurse Practitioner (NP) at the clinic who has worked with a lot of breast cancer patients has asked Sharon (Marlene's daughter who is a nurse at the clinic) to meet with her briefly.

Sharon: Thank you for helping my mom and our family.

Patty: I'm glad to help. She is such an amazing woman.

Sharon (smiling): Yes, she is. Now, what is this I am supposed to do about an elastic sleeve for mom?

Patty: There are several organizations that made these sleeves for patients who have lymphedema. You are probably going to need to get two of them. That way, if one needs to be washed, she still has one she can wear.

Sharon: Does she have to wear it every single day? Nighttime too?

Patty: Probably not. But any time it is swollen, she needs to keep it on. She also needs to wear it even when it is not swollen, if she is going to be using her arm to lift or carry anything. Or, in her diabetes exercise class. Wearing the sleeve before using the arm in those types of activities helps reduce the likelihood of her having another episode. But she still has to be very careful. She cannot overdo activities. The sleeve helps but it does not protect against everything.

Sharon: How often is she likely to have this problem?

Patty: No one knows. Once it happens, it can keep happening for little or no reason that we know of. Or it may never happen again. The best way to handle lymphedema is to protect the arm as much as possible and try to prevent it from happening. But it can just happen for no reason at all. Maybe she sleeps on top of it without realizing it and awakens with a swollen arm. There is a lot to still learn about this disease.

Sharon: You call it a disease. Can it cause her serious illness? Does it cause death?

Patty: Almost never. Only in very severe cases. That is another reason why you need to help keep it from happening if possible or to manage it as soon as the symptoms begin. Come to the clinic any time you need help. Or you can call us from home. Does your mom's phone service include the clinic?

Sharon: Yes. The clinic is a local call so that is not a problem. Do we need to tell her cancer doctors about this?

Patty: Definitely. Tell the cancer nurses and any other providers you deal with from the Cancer Center too. That way they can avoid doing any procedures on that arm and accidentally setting off another episode.

Sharon: Thanks. This is all very helpful. I appreciate you making time in your schedule for all of us.

Patty: This problem was a higher priority than the other health problems of the patients waiting to see me this morning. You cannot wait too long to begin to manage the disease, okay?

Sharon: Yes, thank you again.

Patty: Wait, you're not done. I'm going to see my other patients, but I want you to go online and learn more about the different sleeves. Since your mom is 80, Medicare will pay for the sleeves.

Sharon: Ah, but my mom has never applied for Medicare.

Patty: What? Well, go to Martha Jane's office, you know, the social worker, and she will help you fill out the Medicare paperwork. In the meanwhile, when you find the sleeve that seems like it will work best for your mom, let me know and I will authorize it. After your Mom's Medicare comes through, I will give you the bill to submit to Medicare to pay for the sleeves. That way the clinic saves more of its funds for things not covered by Medicare or Medicaid.

Sharon: Thanks. What information do I need before I select the elastic sleeves?

Patty: Go into Peg's office where you mom is having her massage. With Peg's help, use a tape measurer to measure her upper arm on the swollen side and the arm that is not swollen. Peg will also help you measure the length of her arms, the width of her wrists and length of her arms. The websites will also give you the toll free numbers so that you can discuss the different types of sleeves with someone over the phone. Let them know the types of activities your mom still does (like gardening, gathering wood, preparing food for the ceremonies). This will help them work with you to select a sleeve that may be a better match for your mother. Also ask them about their return policy. This is in case the sleeve selected is too uncomfortable for her to wear for any length of time.

Sharon: Okay, I'll get started.

Patty: The list of lymphedema resources that provide sleeves are in my resources notebook (she pulls out the book and opens to the tab on lymphedema). Let Maggie Ann, the receptionist; know if you need any help using the computer. She is very skilled and helps me all the time.

Sharon: Thank you again.

Patty: Oh, one last comment. I know your mom has those lovely silver bracelets that she likes to wear at special events. From now on those have to be worn on her other wrist, okay?

Sharon: Yes, I noticed that item about jewelry and watches on the list you gave us. She never wears a watch, so at least that's not a problem (smiling).

Patty: Okay, again, you did very well getting her into the clinic right away. I'll see you later before your sister and mom leave the clinic.


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