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Challenges faced by Lymphedema survivors and healthcare providers living in rural areas

Challenges faced by Lymphedema survivors and healthcare providers living in rural areas

An estimated 10 million Americans live with Lymphedema. That’s more than the combined total of Americans living with ALS, AIDs, Alzheimer’s, Parkinson’s, MS, and Muscular Dystrophy. You would think that with so many Americans living with the disease, finding healthcare providers trained in Lymphedema care would be easy enough to do. Not so - the reality is Lymphedema survivors have a difficult time finding knowledgeable healthcare providers. And for people living in rural areas, that challenge is even greater. Jennifer Lee Edmondson, and Teresa Iattoni, the Lymphatic Duo, had the chance to speak with a Lymphedema healthcare provider, who is also a Lymphedema survivor, about the unique challenges faced by those living in rural areas.

Heidi Jo Sovacool, OTR, CLT, is an occupational therapist and certified Lymphedema therapist who is also a Lymphedema survivor.

Tell us a little about yourself.

I grew up in Ashland, Wisconsin, which is on the coast of Lake Superior, in the northernmost part of Wisconsin. I’m a Wisconsin State Licensed Occupational Therapist and Certified Lymphedema Therapist having completed the 135-hour certification course through Klose Training (Vodder Technique) in 2019, and I’m a Gold Certified Exercise Instructor for WholyFit. I graduated from St. Catherine University of St. Paul, MN in 1996 with a degree in Occupational Therapy.

I live in Ladysmith, Wisconsin with my husband of 22 years. We have two adult children who attend college in Minnesota. In 2016, I started Offering Hope Therapies, focusing on physical and mental wellness, and Lymphedema care. I’m also a Lymphedema survivor.

Tell us more about Offering Hope Therapies.

My inspiration for starting a private practice was a desire for greater practice autonomy and personal conviction to serve each client in the way that they needed. Because I live in a rural community, I see a variety of clients and diagnoses; I may be considered a "Jill of All Trades" as an occupational therapist (OT). Most rural providers of OT experience this. My clients range in age from babies to adults. Lymphedema is just one of the many practice areas that I really enjoy.

Share with us some of the unique challenges you and your clients face, by being in a rural area.

Ladysmith is a very small city located in the northwest part of Wisconsin. Its population is just over 3,100. The nearest large city is 1.25 hours away, and the largest metro area is three hours away. This limits clients from quickly getting the specific care or products they need whether it be for advanced medical or dental procedures or even accessing shopping centers.

For Lymphedema survivors, being able to obtain compression garments, especially custom compression garments was not possible in this area. To fill that need, I became a dealer for six major Lymphedema companies, to provide the best possible supplies for decongestion/reduction treatment (phase 1 of Lymphedema treatment) as well as for the maintenance program (phase 2 Lymphedema treatment) based on a client's preference, financial status, and treatment needs.

Iattoni: Rural patients experience limited access to physicians, let alone physicians trained in Lymphedema, as well as limited access to therapists who are properly trained in Lymphedema care. Complicating matters is the risk that well-meaning therapists (who have not been properly trained in Lymphedema care) can actually hamper the patient’s ability to recover, and the patient then believes that treatment doesn’t work and doesn’t help.

Also, rural patients are often faced with long drives to access care and are unable to obtain their necessary daily Lymphedema intervention. Often my rural clients will choose to not seek out treatment until their Lymphedema has become so severe or they have significant complications that they have no choice. Unfortunately, that is not the optimal way to manage Lymphedema and can have serious permanent ramifications for the patient.

Heidi Jo: I have a unique situation where there are many beautiful vacation destinations in my area for all four seasons. So I have partnered with many of these local destinations (hotels, vacation rentals, etc.) to give clients a reduced rate of stay while they complete their 5-day-a-week, 2-3 time-a-week Lymphedema treatments in the beautiful vacation areas of northwestern Wisconsin.

Also, one of the largest challenges that I see is the lack of insurance coverage for compression garments and accessories. This restricts the client from any success due to the inability to afford the compression garments for both phases of treatment (decongestion/reduction and maintenance). Because of this, Lymphedema patients usually are forced to forego any treatment at all, thus being at high risk of having unmanaged Lymphedema, and developing serious complications that can include cellulitis infection, sepsis, possible amputation, and possible death. However, I am very hopeful that in the future, with the Lymphedema Treatment Act taking effect in January 2024, this will provide a means for those Medicare and Medicaid recipients to get the treatment AND the garments they need.

What's the most enjoyable thing about being a small business person and operating an independent clinic?

I love the variety of ages and abilities that I treat, and most of all I appreciate the ability to serve the people in the community which I love.

In addition to being a health care provider who is certified in Lymphedema care, you’re also a Lymphedema survivor yourself. That must provide you with a unique perspective.

It does. I was first an occupational therapist. The reason why I ever became a certified Lymphedema therapist, in the first place, was because of my own diagnosis, and my quest to find answers and healthcare for myself. The healthcare provider became the patient.

Tell us about your own Lymphedema diagnosis and experience.

I had just started Offering Hope Therapies in 2016. In early 2017 I was diagnosed with multiple cysts that had filled my uterus and pelvic cavity, together, they were the size of a jar of spaghetti sauce. I had gained tremendous weight due to increased swelling from the extreme pressure the cysts placed on my lymphatic vessels in my pelvis (thus limiting the flow of lymph and causing
excess swelling). The swelling also pressed against my ureters causing me to have difficulty, and in the end, inability to urinate.

Just before Christmas 2018, I had a hysterectomy to remove the mass of cysts. After a decrease in swelling after surgery, I began swelling again. This time, it was due to the lymphatic system not functioning after being under pressure for so long. Tired of not being able to receive help or a diagnosis causing the continued swelling in my lower body, I took matters into my own hands and sought education to learn about Lymphedema and became a certified Lymphedema therapist.

Late in 2019, I was able to find a doctor who diagnosed me with Lymphedema. Because I had now been trained on how to complete my own manual lymphatic drainage and manage compression garments, I have been managing it quite well on my own. It wasn't until the summer of 2023 that I investigated and learned more about the root problems of my abdominal issues. I’m pleased to say that I’m now 40 pounds lighter, have fewer negative symptoms of Lymphedema, and feel much better overall.

How did your Lymphedema diagnosis affect you?

I felt the diagnosis was validating and a wave of relief to me. I had already been working side-by-side with Lymphedema therapists (in the field of occupational therapy) and already knew much about the treatment of Lymphedema and I had finally taken matters into my own hands to get trained.

I was ready to continue the journey to reduce its impact on my body. I still felt bloated, full, stretched-to-the-max and I was tired of getting bigger clothes to wear. This did have an emotional weight on my shoulders for several years, but I had a plan. I located a healthcare professional at a specialty hospital after getting resources from my Klose Training Certified Lymphedema Instructor, which was in November of 2019.

What challenges did you face in your quest to find appropriate healthcare providers who were knowledgeable in Lymphedema?

Regular healthcare providers are not trained to properly diagnose Lymphedema, especially in the early stages. I went to three semi-local providers and not one of them thought I had Lymphedema. They thought I just may have some "trace" edema and told me to put my feet up or get some compression socks. I was eager to learn more and satisfy my hungry heart's yearning for the cause of the problem.

I was given inaccurate information. I was told that if I just lost some weight I would no longer have any swelling. I was also told by one specialist that I didn't need compression garments, or manual lymphatic drainage massage (MLD) for Lymphedema treatment. These statements were not true! First, losing weight has been a difficult journey and it wasn't until this summer (2023) that I was capable of doing so. Second, I would not have been able to maintain my girth without garments, both circular and flat knit. Even though I have now lost weight and excessive girth from my abdomen, I still have swelling. I suspect that I always will. I will continue to maintain my Lymphedema protocols (MLD and garments) and be a positive example of one who has "been there and done that" and will not stop but continue on.

Edmondson: I can share two examples of healthcare providers providing patients with inaccurate or incorrect information. After my double mastectomies and removal of all my left axillary lymph nodes, I was told that my chances of developing Lymphedema were very low. That was incorrect - not only did I have all the left axillary lymph nodes removed, but the plan was for me to have chemo which included AC/Taxane, and also radiation. In reality, my risk of developing Lymphedema was substantially increased. I did in fact develop Lymphedema and have lived with it for 12 years.

The second example regards a woman who was a breast cancer survivor who had had a mastectomy and no radiation. Many years later, she fell and injured her thumb, on the same side as her mastectomy. She underwent surgery to repair the thumb and developed swelling at the surgical site and in her hand and wrist. Her surgeon told her it was normal post-surgical edema. However, months passed, and her swelling remained.

She contacted me, and I suggested she see a certified Lymphedema therapist for evaluation. At first, she was hesitant, because the physical therapist she was seeing told her they could take care of the swelling. But time kept passing and the swelling remained. When the woman finally saw a certified Lymphedema therapist, she was told the swelling was Lymphedema.

You knew that something was not right, and despite three different doctors telling you that you didn’t have Lymphedema, still you persevered for answers.

It was important for me to get the answers I needed. I knew my body, and I knew that something
was not right, despite what the doctors thought. So I took the full 135-hour course (the gold standard for Certified Lymphedema Therapists) to become a certified Lymphedema therapist. There are many weekend courses that promise to train therapists with the resources they need to
treat Lymphedema, but having witnessed non-successful methods on people I care about, I wanted to get trained in a method that worked and that was founded in current researched
methods of success.

Since then I have applied what I have learned not only to myself but to clients who seek my care for their Lymphedema needs. For me, following the Vodder Method (taught by Klose Training) and doing the 5-day-a-week treatment frequency has been very helpful for myself and for clients. Due to this technique working, I have not used other techniques.

Many survivors of Lymphedema comment that having Lymphedema affects their self-esteem and self-image.

Lymphedema has affected my self-esteem and my self-image. I have continually put on weight since 2017. I have relied on my faith and my family when I am feeling down about my condition. I now have renewed hope because I finally feel that with the medical care I have been provided with this summer (which is ongoing) I have been helping my body heal from the inside out. I no longer have leg pain and the reduced girth size in by abdomen and legs have improved my self-esteem and my self-image.

How do you manage your Lymphedema?

I no longer need daily MLD (Manual Lymphatic Drainage) but use this intermittently when I begin feeling "full". I wear waist to toe compression every day - yes, even in the summer and when camping! I teach a stretching-strengthening and balance class at my outpatient occupational therapy practice multiple times per week. The active movement, the use of garments, intermittent use of MLD and continual visual body assessment (making sure my skin integrity is not compromised) are important parts of my weekly routine.

What would you like to share with people who are struggling with Lymphedema?

Don’t give up! There is hope! There are wonderful people willing to share their knowledge and their therapy expertise to help you. If you don't find the answers you are looking for, keep looking. Contact some of the organizations that teach Lymphedema work (such as Klose Training and Norton School) that teach the 135 hour certification course for a list of therapists in your area. Then contact those therapists and interview them (ask for a screening-they are typically free) and ask the therapist if they are able to do the 5 day a week, 2+ week treatment that will help you. Ensure that the therapist also has resources to get you fitted with Phase I (Decongestion, Reduction) garments as well as Phase 2 (Maintenance) garments. This is important and vital for your success!

Or, reach out to me, and I will try my best to find someone close to help you! I have a vested interest in care. You see, I have Lymphedema too. It took me quite a while to find a practitioner to diagnose this. Being both a certified Lymphedema therapist and survivor gives me a unique understanding of the ins and outs of the physical, emotional, locational, and financial challenges that go along with the disease process.

Final Thoughts from the Lymphatic Duo

Lymphedema is a misunderstood disease that affects an estimated 10 million Americans. The challenges faced by rural Lymphedema survivors and healthcare providers are compounded by their geographic location, leaving rural Lymphedema survivors feeling isolated and hopeless. But there is hope - we Lymphedema survivors might have to work harder to find answers, but each of us is worth the effort. Here are some suggested starting points:

1. Ask your primary care physician for a referral to a certified Lymphedema therapist. If they say they don’t know of any, ask them to do an internet search for you;

2. Klose Training or Norton School Klose’s website has a searchable online directory of certified Lymphedema therapists (search by zip code), and Norton School has an online request form you can fill out and they will email you a list of certified therapists in your area.

3. Heidi Jo Sovacool, OTR, CLT

4. Lymphatic Education & Research Network (LE&RN)

5. National Lymphedema Network (NLN)

6. Teresa Iattoni, DPT, CLS, CES

7. Health, Education & Welfare, a Wisconsin nonprofit.

Next article Lymphedema Challenges from an Infectious Disease Specialist's Perspective

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