Back in March, while sitting in an exam room at the Cleveland Clinic discussing my surgical plan with Dr. Wei Chen, my upcoming lymphedema surgery seemed impossibly far away. Then, all of a sudden, it was here.
And then, even more abruptly — it wasn’t.
Here’s what happened, what’s next, and what I did during the time in between to prepare for my surgery and adapt to the unexpected.
Getting Ready for My Lymphedema Surgery
I was scheduled to undergo a suction-assisted protein lipectomy (SAPL) and what’s called a minimally invasive tissue excision with possible redundant skin excision (MITESE) on my lower right leg. The procedures were scheduled for November 15th, with pre-op appointments a few days before, including an indocyanine green (ICG) scan to assess my lymphatic drainage.
I knew that, in the lead-up to surgery, it was important to prepare myself in every way — and for every phase — possible, from pre-op to recovery, so I spent some time talking with fellow lymphies over social media and email, picking the brains of lymphedema therapists while on a work trip at the National Lymphedema Network Conference, and searching surgery-related keywords in the Lymphie Strong Facebook group.
Hearing such a wide variety of experiences from different stages of the surgery journey helped me better understand and plan for what was ahead, and in turn helped my support system know what to expect, too, especially during recovery.
Preparing for Surgery: Physically and Mentally
Studies have shown that using pneumatic compression along with complete decongestive therapy (CDT) before lymphatic surgery improves surgical outcomes, so in the months leading up to my surgery I focused on “prehab” to get my body ready:
- I upped my pump use from a few times a week to daily hour-long sessions.
- I stayed consistent in wearing my flat-knit garments during the day, and my nighttime garment overnight.
- I scheduled a short course of CDT for the two weeks leading up to the trip, where I had daily appointments at my lymphedema clinic receiving manual lymphatic drainage and getting wrapped from toe-to-hip in layers of foam and short-stretch bandages.
But it wasn’t just my physical body I needed to prepare: my brain needed some work, too. A big part of my mental preparation was to manage my expectations around the surgery itself. I tried not to think of my desired outcome as a petite, skinny leg, but rather a leg that feels less heavy and dense. I reminded myself that this surgery is prophylactic to prevent my lymphedema from progressing more than it already has, and that I’ll still need to do all the things I’ve been doing for years to manage it.
I knew that it would take a while for the results to “show,” but that was OK — so much of living with this condition is taking it day by day, adapting to the changes, and doing what we can to manage it. As my fellow lymphedema friend Dominique Rogers would say, it’s a process to progress.
Preparing for Aftercare and Recovery
After I had written my blog post about the surgery consult, I was contacted by a couple of people who had the surgery themselves and offered to share some tips with me. I wanted to know everything, specifically what recovery was like for them and what supplies they found most helpful to have on hand, and they generously shared their insights and lessons learned.
Everything they said, I shared with my boyfriend, so he understood what to expect as well as how to best support me during recovery. I also created a recovery plan with my lymphedema therapist so she can help troubleshoot any issues I may have post-op with bandaging or pain.
The folks I spoke to didn’t sugarcoat anything: For most of them, early recovery was painful and even excruciating at times, especially once the nerve block was removed.
But despite the challenges during recovery, they felt the surgery was worth it, and they see and feel a definite improvement. Many described their surgery as “life-changing,” with liters of fluid and tissue removed from their affected limbs and having gained a newfound stamina for everyday living.
I couldn’t wait to experience that change for myself.
Supplies for Recovering from Lymphedema Surgery
Below are some of the things I stocked up on for recovery, based on the suggestions of the lymphies I spoke to and what I read in the online support groups. This is by no means a definitive list, but hopefully it can serve as a jumping-off point if you’re on a similar surgical journey.
(Disclosure: To help support the blog, this post includes affiliate links, which means I get a small commission at no cost to you if you buy something through these links.)
- Short-stretch bandages, Tubigrip, and Artiflex for wrapping during recovery
- Padding (like this J-type padding or swell spots) and extra foam for use when wrapping
- Xeroform petrolatum dressing should any wounds or blisters develop
- Bioflect compression shorts
- Eucerin lotion
- Aquaphor
- Neosporin
- A walker (I borrowed one from a family member, but you can rent or buy one from a medical supply store)
- A shower chair
- A bed tray table to eat and work from bed with the post-op activity restrictions
- A wedge for elevating
- Tylenol and/or ibuprofen
Please speak with your doctor or lymphedema therapist about what they recommend for you in preparation for surgery, as well as your plan for recovery and pain management options.
Two Weeks ’til Surgery
Things started to feel “real” in the two weeks leading up to Cleveland. I found myself unable to sleep, instead laying in the dark, scrolling through surgery posts in lymphedema Facebook groups and Googling post-op nerve pain.
The strain of balancing my CDT appointments and work was spreading me thin, too: Every morning at 10:00 AM I’d leave for the lymphedema clinic, get unwrapped, receive manual lymphatic drainage, and then get re-wrapped before catching the bus home by 12:30 PM. Because my mornings were spent at the appointments, all my meetings were pushed to the afternoon, and I’d stay at my desk well into the evening to catch up on my work.
I started to feel threadbare from the stress and exhaustion, and the long and painful recovery seemed intimidating. What if the pain is too much? What if I can’t bandage myself correctly? How will I manage at work?
My boyfriend reminded me that, yes, things may be difficult for a while, but it will pass — and what’s waiting on the other side will be well worth it. “We’ll get through this,” he assured me, folding me into a hug. “It’s going to be so worth it.”
Five Days ’til Surgery
After a rainy six-hour drive, my parents and I arrived in Cleveland on Sunday, November 10th.
The next morning at the hotel, I got to breakfast before them and was about to tuck into my sausage and eggs when my phone rang. Cleveland Clinic, the caller ID read.
Thinking this was a confirmation call for the next day’s pre-op appointments, I answered after the first ring. “Hello?”
“Ms. Ercolano?” the voice asked. She explained that my surgeon had a family emergency and needed to fly back to his home country. “So, unfortunately, your appointments and procedure this week are canceled.”
My dad walked over as I thanked her and hung up the call. Balancing a mug of coffee and his breakfast plate, he saw my face and asked what was wrong.
“My surgery is canceled,” I replied, hardly believing the words I was saying.
“What?” he said, not quite believing it either. I nodded, tears starting to well. “Oh, Lex…”
At this point, my mom had returned to the table and picked up on the shift in mood. “What happened?”
“Don’t gasp,” I prefaced, trying to get ahead of an emotional reaction. “The clinic just called — they had to cancel my surgery.”
She gasped. “No!”
I couldn’t hold it in any longer: I wept, right there in the middle of breakfast. It was as if all the stress and anticipation and anxiety that had been building up for months were suddenly released and bouncing around with nowhere to go, nowhere to land.
What now? I thought.
Six Months ’til Surgery
The surgery was rescheduled for next spring, but disappointment had already settled around my shoulders like a heavy blanket.
What happened was beyond anyone’s control and thus no one’s fault, but it was still something I needed to process.
Thankfully, I had my parents there to buoy me through. Maybe the timing wasn’t right, they said, and maybe we should look at this as a “forced pause.” I often burn the candle at both ends, so why not look at this week as a breather and try to relax a little?
The next day, instead of undergoing my now-canceled indocyanine green scan and anesthesia consult, I spent the afternoon wandering the collections at the Cleveland Museum of Art with my parents.
While gazing at illuminated manuscripts in the Medieval exhibit, my phone rang: Cleveland Clinic on the caller ID again.
I rushed into the museum’s atrium to take the call, thinking the clinic was calling to say they could fit me in today after all. When I picked up though, it wasn’t the clinic staff on the other end of the line — it was Dr. Chen.
In the midst of his family emergency, Dr. Chen reached out to apologize personally for the cancellations, acknowledging that patients wait a long time for these surgeries and the relief that they bring. I told him no apology was needed but thanked him for checking up and that I appreciated his calling.
I rejoined my parents and filled them in. They were as touched as I was that Dr. Chen would call, especially when going through an event of his own. “Not many surgeons would do that,” they said, in awe.
I shot a text to my boyfriend with the update. “That says a lot about his character,” he replied. “Really kind of cements your decision to go with him for surgery.”
Disappointed, but Not Discouraged
Even though my week in Cleveland did not go as planned, it wasn’t without purpose.
In a twist of lymphatic fate, a friend of a friend happened to also be in town for a surgical consult with Dr. Chen, and we ended up grabbing dinner. Having just been diagnosed within the last two years, he was fairly new to the lymphedema world, and so we talked about everything from compression garments and lymphie-friendly footwear to travel tips and community support.
The thread of lymphedema community wove through the rest of the week, as I filled the evenings with my friend Nasreen Starner, a lymphedema therapist in Cleveland: on Tuesday she came to my hotel room to do the Lymphedema Patient Roundtable, a virtual support group I run through my job at Lympha Press; Wednesday I visited her clinic in nearby Westlake; and on Thursday I went bowling with a local pediatric lymphedema support group that Nasreen helped organize for lymphie kids and their families.
By the time my parents and I drove home Friday, I felt better. Sure, I was still disappointed I’d have to wait a little longer for my surgery, but I wasn’t discouraged. The surgery is still happening, and I’ll be even more prepared the next time around. Plus, I had the surprise gift of a really special week spent with my family (and my lymphedema family, too).
I was grateful. I may have left Cleveland with a heavy leg, but my heart felt a lot lighter.
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