Today’s post is a bit self-indulgent.
I spent the bulk of the day at a children’s hospital and on the phone with my health insurance provider to coordinate the diagnosis protocols and payment plans for the healing and health of my heart.
If you’ve been a regular reader of my work, you’ll know that I was born with a congenital heart defect. Today, I learned more about how different I really am.
While I knew my condition was rare, I didn’t realize how few people who are born with the same defect have survived to my age. When I was born, my mother was told, “You have two options: take Molly home and love her as best you can. If we don’t do anything to address her condition now, she will be dead in six months. Your other option is for us to operate, using an experimental procedure.”
After my successful surgery, my hardscrabble and no-nonsense family instilled in me the message, “Your heart was fixed. Don’t milk the surgery for sympathy or use it as a physical excuse.” As a result, I participated in many sports, jumped out of trees with the neighborhood kids, and in general, was oblivious to how serious my situation was. My heart condition was just a part of my life—nothing special.
For example, I have never known a reality that didn’t include periodic chest pains. They range in severity from a slight tightening cramp behind my rib cage to a prolonged radiating pain that travels from the center of my sternum, under my clavicle, through my armpit and down my arm(s), terminating in my middle finger. This is my normal.
They usually occur when I’m under a lot of stress or am exhausted.
So when I met with the doctors today, I was actually surprised to learn that This Is Serious. There are few doctors who specialize in my condition. Most cardiologists who treat adults focus on diseases that occur because humans eat too much red meat, smoke, don’t exercise enough and drink too much. These are the cardiologists who perform triple bypass surgery on your uncle — the workaholic with the spare tire around his middle who has never been seen without his cigar and Scotch.
Cardiologists who specialize in [literally] broken hearted babies haven’t seen many 53 year old women who should have succumbed to her deformity decades ago. I’m an anomaly.
The humble part of today’s title is where I wish to focus the remainder of my rambling.
Two months ago, after over a decade of not being insured (startup, self employed writer), I finally was able to get insurance.
Unfortunately, the plan I was able to get isn’t nearly robust enough to accommodate the tests and assessments needed to treat my current medical situation.
By being 100% transparent and humble with my care team, I was able to walk out of their offices with facts and a game plan to coordinate with my insurer. When I called my insurer, I was able to clearly and dispassionately explain my needs and hoped-for outcomes.
After listening to what I had to say, the Blue Cross Blue Shield customer service representative literally said these words, “Wow. Well, first of all, I want you to know that I heard everything you said, and together, we’ll figure it out. The second thing I want you to know is that I am inspired by your courage and determination. I talk with a lot of people about their health every day, and you are facing something that few people have to deal with. The fact that you’re so calm is truly amazing.”
I didn’t expect that response at all, and I have to confess, hearing her words made me tear up a bit. How many of us get a direct statement that acknowledges when we are being brave?
She then spent over an hour with me on the phone, including looping me in with the federal government’s Marketplace representative, to make sure that I had found a plan that would drastically minimize my financial liability while providing me with excellent care.
My premium increased by a significant amount: from $10 to $355 per month. But the tests and surgery I am facing will range between $20,000-$100,000. Having this plan will significantly lower my out of pocket expenses. My pulmonary valve will more than likely need to be replaced. The electrical system of my heart may also need to be regulated. Part of me is a little scared now, knowing that my heart could short circuit at any time.
But my mantra is, “everything always works out for me.” Including this. I really appreciate your letting me process this, and listening to me ramble.
P.S. Every Sunday, I publish a free weekly newsletter called the 3 Minute Reset, which includes life lessons, life hacks and treats. To subscribe, click here.
