Reflections

Facing fears – and facts – at my yearly lymphedema check-up

When the going gets tough, the tough get elevated.

Last month I went to my yearly lymphedema check-up, with my friend in tow for support. We settled into an examination room and made small talk with the nurse about work, lymphedema, and the cooling weather as she maneuvered around the exam bed, taking careful measurements of my legs and jotting down the numbers.

After the nurse took my measurements, she asked if I had been noticing any swelling in my left leg — my “good” leg. I told her yes: at the end of the day it’s been a little puffy, something I’ve chalked up to sitting a lot at work and eating too much sodium.

“Thought so,” the nurse said. “While I was measuring your left leg I noticed some slight pitting.” She pressed her fingertip into my lower leg; when she removed it, a brief indentation remained.

She entered my measurements into the computer. As it turns out, my right leg has increased 8.7% in volume since last year’s visit and my left leg — my “good” leg — has increased 12.2%.

I felt a flash of panic. Is this it? Is my lymphedema spreading?

My friend recognized the look on my face and quickly launched into action: “That’s okay, it’s fine! It could be all the lunch meat. Wait and see what the doctor says.”

She was probably right, but I continued to fret. When my doctor arrived, we chatted about how things have been going since my last appointment. As he examined my legs, I shared my fears about my lymphedema spreading to my unaffected limb. He said that’s a valid concern, however this could be regular edema triggered by my already-compromised lymphatic system: perhaps my salty, sedentary habits are making things more sluggish than usual, causing the left leg to swell.

To address the increased swelling and to prepare to be measured for some much-needed new garments, my doctor suggested I do a round of complete decongestive therapy. He said the swelling in my left leg may improve as the right one reduces during treatment; in the meantime, wearing an off-the-shelf compression sock on that leg may provide some relief.

Alexa stands in the hallway of a hospital, smiling below the "Lymphedema Center" sign.

What’s complete decongestive therapy?

Complete decongestive therapy (CDT), also called complex decongestive therapy or combined physical therapy, is considered the “gold standard” treatment for most patients with primary and secondary lymphedema.

CDT is done in two phases: the active or intensive phase and the maintenance phase. The active phase is all about reduction and involves multi-layer compression bandaging, manual lymphatic drainage, and exercise. Once reduced, the patient enters the maintenance phase and wears daily compression garments and bandages to manage the swelling.

CDT can last anywhere from three to eight weeks, although this varies depending on the patient’s needs. I did a wrapping treatment for a month in 2012 and again in 2015, when a suggested week-long tune-up had turned into a month-long series.

My therapy evaluation

Two weeks after my check-up, I went back to the clinic for an evaluation with a physical therapist. She took baseline measurements of my legs and performed manual lymphatic drainage on me, and we discussed my treatment plan and scheduling options.

“I’m not sure how I can fit this in with my work,” I said. “Would I be able to come in just two or three times a week?”

“Oh, no,” she said, shaking her head. “You need to come in every day for it to be effective.”

She explained that, once I’m wrapped, I’ll be coming in five days a week for the first two weeks to be unwrapped, receive manual lymphatic drainage massage, and re-wrapped with layers of foam and bandages.

After two weeks, when my leg has been significantly reduced, I’ll be measured for my new custom garments. In the remaining half of treatment, I’ll come in three days a week for the same routine in order to maintain the reduction until the new garments arrive.

A close up image of a pair of gloved hands taking measurements of Alexa's lymphedemetous leg.
Marking the points where measurements will be taken on my legs.

I balked a little: When I did a round of complete decongestive therapy three years ago, I was working part-time and could better accommodate the intense treatment schedule. Now that I have a full-time job, will I be able to make it to multiple appointments a week? How will I handle my daily commute when I’m wearing bulky wraps and a cumbersome surgical shoe?

Health should not be at the mercy of logistics, yet it so often is. I’m stressed just thinking about how to balance these CDT appointments with work and everything else, and on top of that I’m concerned about what’s going on with my left leg.

I know making the time to do this will be worthwhile though, and I want to do it. I need to do it. Outside of work, I’ve been behind on so much lately — my emails, my relationships, my writing. I can’t get behind on my health, too.

Preparing for treatment

Before anything else, I had to let work know what was going on. I spoke with my supervisor about the upcoming treatment and what my needs will be as far as accommodations and time, and together we developed a plan to make sure I won’t miss a beat with my projects.

In the weeks leading up to the first wrapping appointment, I’ve been doing what I can to ensure I get the most out of this round of CDT, including:

If there’s one thing I’ve learned through the ups and downs of my life with lymphedema, it’s this: when the going gets tough, the tough get elevated. My increased swelling is not something to despair about, but rather a call to action for me to re-commit to my treatment and make adjustments as needed.

I get wrapped the day after tomorrow, on Monday morning. Although I’m not thrilled about a month of early-morning appointments and what will probably be a lot of redundant questions about my leg, I feel ready. This has been long overdue.

Have you done complete decongestive therapy? How do you accommodate treatment into your daily life?

21 comments on “Facing fears – and facts – at my yearly lymphedema check-up

  1. Kenton Campbell

    God bless you! I have Milroys Disease. Will you help me with finding a specialist. I’m in Canada though. Cheers!

    • Alexa Ercolano

      Hi Kenton, thanks for your comment! Check out my “Links” page (https://thelymphielife.com/links/) for a list of resources on locating a therapist – there are a couple listings specific to Canadians on there! Hope that helps.

      Be well,
      Alexa

      • Kenton Campbell

        😊Thank you so much for your reply Alexa! I’ll have a look. Cheers

  2. Hi, managing appointment logistics with work is difficult. Add on the annual appointments that a parent has to do with kids and it’s next to impossible.
    However, I have the problem of not being able to get an annual appointment with my local lymphedema clinic at all. First of all, to get my diagnosis I had to fly from the Bay Area to Santa Monica to see a specialist; this was in spring 2017. She was able to provide a referral to my local lymphedema clinic. I went to three appointments with the therapist at the clinic – getting fitted for compression stocking and getting a pneumatic pump – and then I was sent off with good wishes for self-care for the future. The therapist told me that i would not get to receive annual checks at the clinic, and I can not afford to go to the specialist in Santa Monica for an annual check. And, my new primary care doctor knows nothing about lymphedema and its management.
    So, I’m trying to get into Stanford to see a specialist there – next available appointment is in January 2019 and I first need to see my primary care doctor for a referral. So frustrating even to get the required basics!

    • Kenton Campbell

      God bless you Kristin!

    • It seems hard to believe there aren’t more LE specialists or therapists in the Bay Area. Going to Stanford is a great idea, of course, they’re gold standard. But I wonder what else there might be? There’s a FB group – the Official Lymphie Strong Inspiration Group – that has a lot of members, and somebody on there might be able to help. (As for Stanford, January isn’t THAT long away, in a worst-case scenario.)

    • Alexa Ercolano

      Oh, no… I’m sorry Kristin, that’s incredibly frustrating! And to have a primary care doctor unfamiliar with lymphedema is like the cherry on top. 😔

      To echo Elaine’s comment: January thankfully isn’t too far off, and an appointment with Stanford would be amazing. If you’d like to try and find something available sooner, I’ve got some resources for finding certified lymphedema therapists on my “Links” page: https://thelymphielife.com/links/

      I hope you’re able to find a therapist soon!

      Wishing you all the best,
      Alexa

  3. Hi Alexa,

    I’ve been following your blog for a few months now and I just wanted to thank you for sharing your experience and research. I’ve lived with primary lymphoedema in my right leg (just like you) since I was 9 (I am now 34) and it is nice to read your words which describe so well what we “Lymphies” go through.

    I haven’t done a CDT in years, the last one must have been when I was in secondary school. Back then I would be hospitalized for a minimum of two weeks in a specialized Parisian hospital (I forgot to mention that I am French) called Cognacq-Jay. I hated it, understandably, especially because I had to be in hospital on school holidays so as not to miss school. At one point, the doctor considered that my swelling was reduced as much as it could be so CDT wasn’t necessary anymore. During my last check-up (which was also a few years ago), the doctor did say that a CDT would now be a good idea as the swelling in my leg is slowly but surely getting worse… Problem is, I’ve moved to Croatia (this explains why I haven’t been doing regular check-ups), so it complicates things a little!

    Anyway, I wish you a successful CDT and I cross my fingers that your left leg will be fine.

    Be well,
    Elsa

  4. I was told in July that I need another round of CDT for my arm. I’m going to work it in January. I went 3-4 times a week the last time I did it and it was fine. I’m going to ask about getting measured before the end of the treatment. Last time I stabilized at 3 or 4 weeks, continued for a total of 6, then wore my old garmet until the new one came in, but it was the same size.

  5. Kris Von elling

    Hi Alexa,
    I have secondary lymphedema in my left leg. Managed myself for yrs with jobst stocking yet condition worsened. Finally decided to get serious about taking better care of myself due to issues related to lymphedema. I was fortunate when a PT joined hospital staff who was certified lymphedema therapist. She evaluated me and explained the commitment involved in CDTtherapy; I agreed with some reservations. I could participate on a fairly regular basis as I was recently retired and spouse was on board. It was a difficult 6 weeks of tx. I endured, becoming more educated about my condition and learning tools to manage it more effectively. I did this in late summer. It was hot, and not being able to bath as I was used to was a challenge. Insurance was another obstacle as this tx is not cheap and many times is not covered or limited coverage. The good news is that I did connect with a medical supply co who got me set up with a reduction kit (garment) which has been the biggest blessing and I continue to wear daily. I used to wear at night but it became too claustrophobic. Anyway, my condition is more severe yet I feel I am maintaining as well as I can giving the demands of daily life. Best wishes to you during your journey. You look great!

  6. Julia Archibeque-Guerra

    Thank you for sharing… not only the details of the time commitment required but also your personal feelings. It is ok to feel scared; it is an honest emotion ❤️

    You are always here for all of us who look forward to reading your blog; now it is time for you to take care of yourself. I will be praying for successful results.
    Luv ya!
    Julia

  7. Hi Alexa, thanks for your post. I’m newly diagnosed with leg lymphedema and lipedema. I just finished my first week of CDT and I’m so overwhelmed that I’m ready to quit! If the bandages are the proper tightness I have pain in my legs, and when she does them a little looser they feel like they aren’t doing anything. I’m sleeping horribly with the bandages too. I guess I will go to my Monday appointment b/c it’s too late to cancel it, but I am really thinking of dropping the rest. I have someone coming to my house from Tactile Medical on Tuesday to show me the Flexitouch pump and measure me. I wonder if using the pump daily would be enough. Why does this have to be so hard???

    • BTW, my lymphedema is from varicose vein disease and lipedema.

    • The beginning is the worst. I remember how just looking at my leg in the bandages horrified me, never mind doing it myself – and it took 20 minutes to wrap each time! Now, when I wrap, it takes five minutes or less; re-rolling the damn bandages takes way longer! It’s not fun at all but the CDT times are the hardest, outside of that it becomes daily management and experience. Luckily (I now think) I had a lot of problems early on so now I know how to cope with a whole range of different things. It isn’t easy at all but hang in there!! btw CDT, especially the first time, usually has pretty dramatic results – concentrate on that.

    • Kristin Von elling

      Explore the possibility of using a reduction kit wrap with your therapist. I understand how difficult and unrealistic the wraps can be as I had that therapy last yr. .I stuck with it but it was very difficult, physically and emotionally. Look at resources at lymphedema.com, and go to reduction kit. Just a possible option. The pump will help also. Hopefully insurance will cover. Stay strong. K. Von elling

      • Thanks Kristin, I will talk to her, but I’ve already spent a lot of money on the bandages. I think I will have to see it through, but I will definitely talk to my therapist and get her thoughts and see if it’s something I could use in the future. The only issue I see with the reduction kit is it doesn’t treat the toes and feet. She told me that was important when I first started. Maybe she could wrap the feet and then do the kit. Insurance will cover most of the pump, so I’m thankful for that. Thanks for your encouragement!

  8. Good luck with your treatment. I am glad I had the SAPL surgeries with Dr. Granzow. My legs are maintaining and doing good. I get measured for custom garments every 6 months. The nurse that measured me last month is very impressed. http://www.LymphedemaSucks.com

  9. Hi Alexa, thanks for tell as your experiences and feelings. I have lymphedema on both legs, left first and right 1 year later. I can’t remember if I experienced something like you or 1 day I woke up with the both leg with the same f*..king problem, by the way, I just remember the terror I felt, I thank I could sweling to finish like a baloon….😓 (but it never happened). All those years (7), I took the cares that I can, but it was very difficult, I had pain, cellulitis (4 or 5) and many depressive moments, but now, I’m so happy, because I’ll have surgery’ date on dec 17th and I’m on CDT right now, it’s complicated and very expensive (i have a full day job and i’m studying an LLM) but I have faith, nothing can stop me now!!
    I hope your treatment will be succesful and all of these fears disappear.
    ❤️❤️❤️❤️❤️

  10. Alexa,
    CDT is the way to go. I know it is a big commitment but it is for a much shorter time than if you go a few times a week. My first round of CDT I had 2 boys age 3 and 14months. I lived in New York and had to travel to New Jersey for treatment. I had to find sitters for my boys and BTW my 3 year old had been diagnosed with insulin dependent diabetes one year earlier so I needed someone that could give him injections and feed him. My mom was working and couldn’t help for more than one week, but I found someone. I had to bring the little one with me and drop him at a YMCA that allowed me to leave the building because of my situation. This was right after Thanksgiving so holiday traffic, dropping the kids off in two different places, packing food for the day for all 3 of us and driving in bandages. By Bandages I mean 32 bandages starting with toes up to thigh on both legs. The CDT I had was a shower upon arrival, 1 hour MLD, wrapping, exercise program, nutrition program, lunch, unwrap, roll bandages, another 1 hour MLD session, wrapping and then go home for the night. This treatment was 5 days a week for up to 6 weeks. I did it in 3 weeks, lost over 50 pounds and lots of inches like 11 inches around one of my legs just above the knee. I still had to prepare for Christmas and keep my house clean and decorated. there is a husband in all of this who joined me the last week so he could learn how to help me. All of this was in 1992 when I was 27. I have primary LE diagnosed at 3 in my left leg. I have been wearing compression since 18 months.8 debulking surgeries between 1968 and 1987 left a lot of scars on my legs. I and now age 53 and I have LE all over including head and neck.
    What is my point? I MADE IT WORK. Yes there is a commitment for the time spent there and a commitment to continue with a management program after. BUT, this kind of treatment is the way that we learn how best to do that management and to empower ourselves with extra knowledge about this disease and our own personal struggles. So when My left arm began to swell and my abdomen began to swell and when my face began to swell and when my left arm began to swell, all at different times, I knew what to do because of the great treatment that I had over 25 years ago. I have gone for CDT many times over the years and I have been subjected to the 3 times a week treatments while I continued to work and take care of my family. Those times were the worst because 5 treatments a week for 3 weeks turned into 8 or 10 weeks of life disruption.
    You know what you need to do and it S-U-C-K-S when this disease spreads to another area and just when you were getting everything going the way you wanted. But Alexa, take care of it now, put life on hold for 3 weeks so you can get on with it for the other 49 weeks in the year.
    I have had to reinvent myself many times over the years and had to live for the lymphedema, but I never let it take over my life. I am proud to say that I LIVE my life with lympedema not for it.
    Alexa, you can do this and get on with your life. My love and prayers are with you.

  11. wow, this blog and the comments on it are great. I was diagnoses with primary lymphedema in my mid 40’s am now in my late 40’s. I find that the encouraging words of others that are going through this is so helpful. The other part is that if my lymphedema gets worse and I hear words like Complete Decongestant Therapy I won’t be as scared. I also don’t feel as alone when I am doing my manual lymphatic drainings and it reminds me to do my breathing exercises. and to drink my water…which is for some reason so hard to remember.
    Thanks everyone and continue the good fight! Stay elevated!

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