19 minute read
COVID-19 stories
COVID-19 stories Voices from the lymphedema community
Personally surviving COVID-19
I am a pediatric dermatologist, and part of an amazing team looking after children and adolescents with lymphedema at the CHU Sainte-Justine in Montreal. We have been hit terribly hard by the COVID-19 virus, in spite of the quarantine and social distancing. It is difficult to witness the number of patients dying and scary to see health personnel who were exposed to the virus, die also. Fortunately COVID-19 does not hit harder if you have lymphedema.
I contracted it myself in early March, before we realized COVID-19 was in the community. It was most likely a patient that had travelled south who inadvertently gave it to me. My symptoms included coughing at night, sore throat/laryngitis, plus sinusitis for two weeks before diagnosis. Then night-time fevers, chills and extreme fatigue set in, along with nausea with an 8kg weight loss, for one more week. Two weeks after my positive test, I was happy to receive two negative tests, so I could return to work. My husband got it too. Surprisingly, he tested positive at a time when he had felt great for two weeks. That was a lesson for both of us, as it meant COVID-19 can be contagious, even in people who are healthy. Most of us do well, get through this illness, and hopefully have some immunity going forward. One must be careful if there are other underlying health conditions, or if elderly.
We had to cancel our lymphedema clinic visits for now, although any urgent case can be seen in person. We have started teleconsultations using photos for virtual visits. However it is not the same, and I really miss seeing my patients. I think teleconsultation will be here to stay and may be helpful for follow-up visits in the future. We are being
catapulted into learning modern techniques of sharing information.
I wish you courage and common sense to get through this tough time. Keep up the social distancing, masks when out of the house, hand washing and sanitizer. Take time to meditate, enjoy the spring sunshine, and the little things, those we love and forget to tell enough. Like the pregnant robin that greeted me this morning in my back yard, life is amazing! Dr Catherine McCuaig Montreal, Quebec
Bringing mindfulness to MLD sessions
I’m an ovarian cancer survivor who developed lymphedema in my left leg and groin eight years after my surgeries...Surprise. While studying yoga, I discovered how to bring mindfulness to my morning MLD sessions. Bit by bit, as I made space and time to practice, my entire relationship to this daily chore and to my imperfect body has changed. The chore now feels like a treat, because I tend to my creature comforts; warm room, dim light, privacy. My body feels pampered and well tended. My mind, more still, less disturbed by anger, sadness, and worry. Lisa McKhann Duluth, MN USA
Fighting for my patients
Closing my practice in the middle of March to help to contain the virus has been hard financially, but worse knowing that my work is vital to my lymphedema patients. On Easter Sunday I received pictures from two different patients of their limbs that were red and they said they were hot. It broke my heart to tell them, “You need to go to emergency in case this is cellulitis and you need IV antibiotics.” I realized then that patients not getting their treatments and lymph fluid lying stagnant in their tissues was a true risk for their lives and how I could keep them out of the hospital exposed to possible COVID-19.
I have been working with our College, writing patient case reports on how their risk of infection could put them in the hospital. I reached out to my first top five cases telling them what I was doing to try and get them treatment. Just the fact that I was fighting for them meant the world to them. It lifted their spirits.
Recently, I have been granted to see, with strict protocols, my first five patients. The gratitude they have had for me as I meet them masked at the door of my clinic to take their temperature and sign consent for treatment was heartfelt. They are joyful knowing that they are being cared for again.
I know this is a hard time for our patients. Slowly getting to see them with extra safety protocols in place to protect us all, is hopeful and therapists can’t wait to get back to our flocks. It was a good week! I have now applied for the next five cases and I wait patiently. Grace Dedinsky-Rutherford Director Vodder Schools-International Ltd North Vancouver, BC
Front line nursing during COVID-19
I peel off the clothes I’ve driven home in and I drop them in the wash with my scrubs. Gone are the days of wearing scrubs in the home. I turn the water to hot and think, “What about my compression socks?” Working as a pediatric nurse practitioner in an
emergency room in New York City means that I’m constantly exposed to COVID-19. I’ve read about how to decontaminate myself to avoid transmission to my family. I wear PPE, change before leaving the hospital, shower, and wipe everything down with disinfectant. But what about my compression garments? Did COVID find its way to my ankles while I was assessing my patient with fever and cough? Did I do enough to protect myself? My patients? My family?
I look down. These stockings are so worn. I’m overdue for new ones, but no one is doing measurements. I don’t want my primary lymphedema to get worse, but the pharmacy where I’ve gotten them in the past is no longer fulfilling custom orders. Will they last longer if I wash them every day? Or should I not wash them to preserve the elasticity? Hot water will certainly degrade them sooner, but at least it’s more likely to kill COVID. I turn on the cold water and hope I’m making the right decision. Jennifer Nahum Children’s Hospital at Montefiore The Bronx, New York
Pivoting to a new way of delivering care
In the midst of COVID-19, closed clinics left clients unable to access hands-on care. Our patients felt abandoned and anxious about how they would manage. We quickly implemented virtual care for lymphedema management. Our strategy was to reach as many of our existing clients with “check-in” visits and self-management plans; and to provide an opportunity for newly diagnosed and lymphedema patients from across the province to access our care team remotely. After an initial learning curve of clients using new technology, we were quickly able to give them effective and valuable self-management plans. We demonstrated how to perform self-manual lymphatic drainage, exercise, taping and bandaging techniques. We viewed this as essential to preventing flareups and helped put control of lymphedema in the hands of our clients.
An example of how we were able to help patients from across the province was a new client from a small town over 250 km from our location. We taught the family how to measure for garments and connected them with a fitter in their area to order the right garments. In normal circumstances, even before COVID-19, this client would likely have never been able to access lymphedema care and compression garments. We also started a free weekly webinar series to support people with lymphedema or those newly diagnosed. This crisis quickly tested all healthcare professionals to be able to adapt. The ability to pivot to a new way of delivering care will offer opportunities to help patients even when this crisis is over. Ann DiMenna Clinic Director, Markham Lymphatic Centre Markham, Ontario
Maintaining control
The COVID pandemic came suddenly and has literally disrupted all our lives, including my own personal care habits. I’m currently unable to work, had to stop my dragon boat sessions and visits to my gym. My basement has been converted to a little gym, whereby I’m doing yoga and Zumba classes online for three hours per week. Of course, it is much more enjoyable to go in person to the gym, or paddle on the lovely Lachine Canal, but the satisfaction and the sense of well-being is the same, along with the control of knowing you are still able to do exercise and manage your lymphedema. Daily I see progression, and won’t forget where I started from. It’s giving me hope and filling my heart with excitement, so please, don’t give up either!
My life and habits have changed because of the pandemic, just like my lymphatic system did when I first got diagnosed. We can’t always control what happens in life, but we can learn to adapt. Like finding new ways to exercise, just as my lymphatic system found new channels to redirect the lymphatic fluid. Trying to find the perfect formula is the key to managing my lymphedema, but with the proper knowledge, and guidance from the right health care professionals, I did it! I’m not afraid of the challenges COVID brings, as I’ve done it before, I will do it again, no matter what circumstances life throws at me! Georgina Cama Montreal, Quebec
How COVID has affected me
Like everyone, I listened to the news for updates on this virus. My work, deemed essential would remain. Life was pretty normal, until the closures started.
I woke up one Saturday morning, rolled over and went into atrial fibrillation. I had experienced this once before, but not since heart surgery to replace a valve. I ended up in hospital for two days. The only thing I noticed was that both sides of my neck were swollen. I have had lymphedema in my left arm, armpit and left side of my neck for about six years. I had managed it pretty well until now.
As I am unable to see my lymph drainage massage therapist, or get fitted for a neck compression garment, I have been doing the self-massage video that I received from the Lymphedema Association, and found some good yoga videos. Next step is to see my chiropractor. Deemed as urgent, I can see him for shockwave therapy. I tried this last year, and it really reduced the swelling under my arm. I am hoping for the same result again. Be safe everyone. Stay healthy, stay strong! Rita Fischer Lethbridge, Alberta
Open for business
We are all doing well. After
asking some workers to
work from home, changing
shifts, and modifying business
hours to maintain social distancing,
we are still open for business and are able
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I hope you and your families are well also!
Hints and Tips
Remember to move
Especially given the COVID-19 isolation protocols, it can be hard to remind yourself to move. Our daily step counts are dwindling just due to the decrease in daily activities we normally have outside the home. Aim to get up once every hour and walk around—whether it be outside or inside your house.
Water temperatures
Due to the global pandemic we have all been made aware that one of the most important things we can do as a precaution is to wash our hands. Ensure you are keeping your water at a lower temperature to avoid damage or possible burns to the skin. Source: CureToday.com
Stay connected
Living with a chronic illness can feel isolating, and not being able to leave the house can intensify these feelings. It is important during these times to ensure you stay connected with the people in your life or even form new con nections by reaching out to people who might be feeling the same way. See if you can get connected with another patient by researching online support groups in your area. Your provincial lymphedema association can be a valuable resource.
Stay in touch with your therapist
While lymphedema therapy appointments have been put on hold (or may be occurring less frequently) make sure that you stay in touch with your therapist. They may have at home massage tips that will prove to be helpful while we are all staying home.
Deep breathing
Deep breathing is helpful for all types of lymphedema, even head and neck swelling. It changes the pressure in your abdomen and chest which encourages lymph to flow back into the blood system. Try five deep breaths while lying down with your hand on your abdomen. Breathe in through your nose and slowly out through
your mouth.
Source: Cancer Research UK
LP
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Did You Know?
Lower extremity lymphedema is frequently encountered in the vascular clinic. Established dogma purports that cancer is the most common cause of lower extremity lymphedema in Western countries, whereas chronic venous insufficiency (CVI) is often overlooked as a potential cause. Moreover, lymphedema is typically ascribed to a single cause, yet multiple causes can coexist. A 3-year retrospective analysis was conducted of demographic and clinical characteristics of 440 eligible patients with lower extremity lymphedema. Results: The four most common causes of lower extremity lymphedema were CVI (phlebolymphedema; 41.8%), cancer-related lymphedema (33.9%), primary lymphedema (12.5%), and lipedema with secondary lymphedema (11.8%). The collec tive cohort was more likely to be female (71.1%; P < .0001), to be white (78.9%; P < .0001), to demonstrate bilateral distribution (74.5%; P < .0001), and to have involvement of the left leg (bilateral, 69.1% [P < .0001]; unilateral, 58.9% [P = .0588]). Morbid obesity was pervasive and significantly correlated with a higher ISL lymphedema stage. Approximately one in three of the population sustained one or more episodes of cellulitis, but patients with stage III lymphedema had roughly twice the rate of soft tissue infection as patients with stage II. Multifactorial lymphedema was present in 25%. Conclusions: In a large cohort of patients treated in a cancer-affiliated physical therapy depart ment, CVI (phlebolymphedema), not cancer, was the predominant cause of lower extremity lymphedema. One in four patients had more than one cause of lymphedema. Notable clinical characteristics included a proclivity for female patients, bilateral distribution, left limb, cellulitis, and nearly universal morbid obesity.
Source: J Vasc Surg Venous Lymphat Disord. 2020 Jan 25;: PubMed: 31992537
BMI a major risk factor for severe BCRL
A few studies have examined the characteristics of severe breast cancer-related lymphedema (BCRL). Characteristics of patients and factors related to severe BCRL were retrospectively assessed in 74 patients. The median age at time of LE was 56 years (30-82). Thirty-five patients (47.3%) had a mastectomy and 72 (97.3%) an axillary lymphadenectomy. Among patients treated with radiation therapy (n = 72), 76.3% received lymphatic nodes irradiation. Fifty-five patients (74.3%) received chemotherapy and 52 (70.3%) a hormonal suppression therapy. A high proportion of patients had severe (>400 mL, 64.9%) and premature LE, with a median time of 13 months since onset of surgery (0.1-400.2). Weight gain between surgery and LE management was more prevalent in obese patients (p = 0.0164). Body mass index (BMI) at BCRL diagnosis was the only risk factor associated with severe LE (p = 0.0132). There was no significant association between LE severity and treatments received for breast cancer. Conclusions: Our study did not show any influence of tumor characteristics and cancer-related treatments on the severity of BCRL. Only BMI at BCRL diagnosis appears as a factor related to severe LE. These results highlight the importance of an education care unit promoting personalized nutritional lifestyle and encouraging physical activity early in the management of breast cancer.
Source: Lymphat Res Biol. 2020 Apr 13.doi: 10.1089/lrb.2019.0009
The influence of BCRL on return-to-work
Lymphedema is one of the major treatment complications following breast cancer surgery and radiation. As the majority of women who develop breast cancer are at the age of employment, occupational functioning and employment are issues of concern. This study is novel in exploring the ways that LE affects their work experience. A total of 13 female survivors who developed BCRL participated by completing a survey and a 60-min semi-structured interview. Four main themes emerged: (1) breast cancer-related LE affects physical and emotional functioning associated with work; (2) ongoing treatment for breast cancer-related LE creates challenges for work; (3) environmental factors affect the returnto-work experience; and (4) personal factors play a key role in adjusting to return-to-work. Conclu sion: Both breast cancer-related LE and its treatment have direct and indirect effects on work, with environmental and personal factors also shaping the work-return experience. This study suggests that breast cancer survivors with LE who wish to return to work face potential barriers, and that gaps remain in the availability of supports.
Source: Womens Health (Lond). 2020 Jan-Dec;16: PMID: 32293984 LP
Canadian and International Events With uncertainty during the COVID-19 pandemic, in-person conferences have been cancelled or delayed until 2021. However many organizations are offering online symposiums, webinars and other virtual learning opportunities. We suggest you check the websites of the Canadian Lymphedema Framework (www.canadalymph.ca), plus your provincial lymphedema association and the following international organizations, known for offering educational opportunities: Australasian Lymphology Association www.lymphoedema.org.au International Lymphoedema Framework www.lympho.org Lymphatic Research and Education Network www.lymphaticnetwork.org Lympoedema Support Network www.lymphoedema.org National Lymphedema Network www.lymphnet.org Therapists can still access sessions and courses towards certification from many of the educational schools offering online options for learning. Check the advertisements in this magazine for individual school websites and details. People living with lymphedema can access the following videos from Pocket Medic to help in their self-management, especially while they cannot access their lymphedema clinic or therapist during self-isolation. Introduction, skin care, exercise, compression www.medic.video/can-lymph Lymphedema education www.medic.video/can-lymph-edu LVA – Lymphatic Venous Anastomosis www.medic.video/can-lymph-lva Reducing the risk of lymphedema www.medic.video/can-lymph-risk Children and young people with lymphedema www.medic.video/can-lymph-young ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ ________________________________ ____________________ ________ _________________________________ _____ ______________________ _______________________________ _____________________________ I much enjoy reading your Pathways Magazine. There are lots of valuable educational material for patients and clinicians alike. Your recent article “Remedial exercises for upper extremity lymphedema” especially caught my attention (Winter issue). We know the importance of movement and muscle contractions, which stimulate the lymphatic system; your illustrations for patients following SLN/axillary node dissections in patients at risk or existing lymphedema following breast and melanoma cancer are excellent. I share them with all my patients. Please extend my thanks to the authors. Saskia R.J. Thiadens, Sutter Health (CPMC) San Francisco CA ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ ___________________________________________________________________ I received the Pathways Spring magazine. The article/interview by Machteld Huber is great. I saw her lecture at the ILF conference in Rotterdam and was deeply impressed. For me it was the best lecture at this conference. By the way: I love the picture on the cover of Spring Pathways . We should see more of these “normal” women on other magazines. It would reduce the pressure to have a body shape like super thin models have. Dr. Tobias Bertsch, Foeldi Clinic Hinterzarten, Germany __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ Thank you for all of the great information you share, and stay healthy! Rita Fischer Lethbridge, Alberta We would like to hear from you... If you would like to drop us a line, please do so at: pathways@ canadalymph.ca Letters to the Editor... __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ __________________________________________________________ The growth in awareness and focus on lymphedema has been extremely helpful to those of us who have it. Pathways is a great magazine to keep up with progress in Canada. Joan Plamondon Fort Saskatchewan, Alberta
The Canadian Lymphedema Framework (CLF) wishes to thank key industry partners for their financial support in making this magazine a reality.
CANADIAN LYMPHEDEMA FRAMEWORK PARTENARIAT CANADIEN DU LYMPHOEDÈME
About the CLF
The Canadian Lymphedema Framework is an academic and patient collaboration, working to improve lymphedema management for lymphedema and related disorders in Canada.
The CLF distributes Pathways including customized inserts through its provincial partners. Alberta Lymphedema Association Atlantic Clinical Lymphedema Network BC Lymphedema Association Lymphedema Association of Manitoba Lymphedema Association of Newfoundland and Labrador Lymphedema Association of Nova Scotia Lymphedema Association of Ontario Lymphedema Association of Quebec Lymphedema Association of Saskatchewan
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