Last fall, when my surgery was unexpectedly canceled just days before it was set to take place, I was disappointed.
When it happened again, less than a month before the rescheduled date, I was absolutely gutted.
Changes to Health Insurance Change the Plan
In early April, my employer, who provides my health insurance, announced a change in our insurance provider. After a brief open enrollment period, the switch to the new plan would take place on May 1st.
My heart sunk: My lymphedema surgery was scheduled for May 2nd. What did this mean as far as coverage for my procedure?
The surgery was pre-authorized through my current insurance provider — would the authorization carry over, I wondered, or would it need to be re-submitted to the new provider? With less than a month until the surgery date, I doubted that would be possible.
I spent the next few days on the phone with my HR department, my current insurance provider, and the Cleveland Clinic, trying to understand how this would affect my surgery.
Eventually I found out that, yes, the clinic did need to obtain pre-authorization from the new insurance provider, which meant the surgery had to be rescheduled. Again.
The clinic penciled me in for a date in early June, but are unable to confirm the appointment without the new insurance information — information neither I nor my employer has access to until May 1st.
So: I wait.
From Surgery Delays to Brighter Days
Like last time, this delay is no one’s fault, but it’s still a disappointment.
My mom gently reminded me that it’s not canceled, only postponed, yet my inner Veruca Salt stomped her swollen legs and whined anyway.
My body’s been changing from my lymphedema. I see it, I feel it — and I didn’t realize how tightly I was holding onto this surgery as a means to give me more control over my condition and its progression. So I cried. I wrote in my journal. I leaned on my support system, and cried some more.
Once the dust settled and there was nothing else to do but wait for the new insurance to kick in, I reached a place of acceptance. I decided I’d use this extra time as an opportunity to focus on prehab so I can have the best possible outcomes for both the surgery and the recovery.
I gotta say, though, that my lymphedema guardian angel has been really watching out for me with these delays. Each one has come with a twist of lymphatic kismet: last time I spent my would-be surgery date bowling with children with lymphedema, and this time, I’ll again be cocooned in the community.
With my trip to Cleveland canceled, I was able to accept an invitation to speak at the upcoming National Lymphedema Network Patient Summit — an invitation I previously had to decline because it conflicted with my surgery date. My presentation, titled “Living and Writing the Lymphie Life,” will share lessons learned about my lymphedema through blogging, and encourage others to share their positive “lymphfluence” as they go about their own lymphie lives.
So, despite waiting a little longer for my surgery, I’m not waiting alone. It makes it easier to be patient when I’m with other patients.
Insurance Coverage Resources
The healthcare system is a frustrating maze, made even more complicated when you’re seeking treatment for a misunderstood condition like lymphedema and other lymphatic diseases. Coverage isn’t always guaranteed, and we may have to advocate harder for ourselves to get the care we need and deserve.
I wish I had the answers to help those of you on similar journeys, or a clear roadmap to offer, but I barely understand it myself. That said, here are a few resources I’ve found helpful for navigating health insurance with lymphedema:
- 10 Things to Know About Lymphedema Insurance Coverage by the Lymphatic Education & Research Network
- Insurance coverage FAQs from the Lymphedema Advocacy Group
- Downloadable one-pagers on insurance coverage from the Lymphedema Advocacy Group
- Your Rights to Insurance Coverage of Lymphedema Treatment by LymphActivist (Note: this was last updated in 2010 but still has valuable information; I recommend clicking around the site for more resources with that caveat in mind)
- How to Appeal an Insurance Company Decision from healthcare.gov
This list is centered around the United States healthcare system, but if you have any additional tips or resources for navigating your country’s healthcare system, please leave them in the comments. They might help someone else!
Keep fighting the good fight, lymphies — and stay elevated!
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