Life, Interrupted: Medical Bills, Insurance and Uncertainty

I like to write my own pieces on this site, but sometimes I read things that resonate much too deeply to ignore.  Things that I want to shout from the rooftops and say, This is real life.  This is my life.  Why didn’t I think to write that first?

Suleika Jaouad writes a column for the New York Times called “Life, Interrupted,” about being a young twenty-something with cancer.  Sounds familiar, right?  Her article today struck a chord deep inside.  I hope you’ll read it and understand exactly what my family and I go through playing the patient-vs-insurance game every single day.  I hope you’ll pray for health care reform in this country and that it helps instead of hurts and doesn’t end up leaving we chronic illness patients just more sick and tired.

Here’s our story.

Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.

But before the shock of the news could settle in — before I could consider where and how I would be treated — I did what most Americans must do when beset with a medical crisis: I called my insurance provider.

Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.

If you have a chronic illness in America, there’s a good chance you also hold a degree in Health Insurance 101, whether you want to or not. The first thing I learned was how lucky I was to have health insurance at all. (An estimated 49 million Americans, and nearly one-third of Americans 18 to 24 years old, are uninsured.) I was on my parents’ insurance, a plan provided through my father’s employer. It’s a comprehensive plan that will cover me until age 26 — two years from now.

I’ve been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care. It all sounds straightforward when I explain it like that. But even if you have insurance, the cost of health care — in dollars as well as in time and stress — is incredibly high.

As health care was debated around the country leading up to the Supreme Court ruling on the Affordable Care Act in June, my bills kept coming in. Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction — and there’s always a bill on top of it. For a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment. Keeping track of how much I owe, and for what procedure, and why, can make my head spin. Just learning the ins and outs of my plan’s coverage takes sustained, persistent attention and energy, things that sick people have in short supply.

And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?

Another cost of health insurance is time. Time is money, as the saying goes, but when it comes to cancer and health insurance, to save money takes up a whole lot of time. My mother graciously took on the task of disputing claims, keeping track of bills, requesting approval for a procedure or a drug, and spending countless hours on the phone with my provider. While it may be a labor of love for my mother, in practice, working out insurance questions is just a lot of labor. Between the long hours spent taking care of me and dealing with our insurance, my health care became my mother’s full-time job.

So far, the out-of-pocket costs associated with my cancer care — co-payments, out-of-network charges, the costs of moving to a new city for treatment, fertility treatments not covered by insurance — have reached tens of thousands of dollars. The financial burden of cancer has not yet meant that my parents will need to get second jobs, or that we will have to sell our house — though I know of fellow cancer patients with and without insurance who have had to consider such options. But my mother has had to take the last year off work, a financial and professional sacrifice that’s due in part to the time required to manage my health insurance. What do others do who don’t have full-time help from a caregiver? My mother would do anything for me, but I wish she would be able to spend less time with my bills and more time with me.

In two years, I’ll graduate from my parents’ insurance. What will I do about insurance then? Perhaps I’ll gain coverage through an employer — though holding a job seems like a tall task if I’m still in treatment. Isn’t it a contradiction that insurance is often tied to employment, but that the sick people who need it most are the ones who have the hardest time staying employed? If the Affordable Care Act remains in place, at least I won’t be denied coverage because of pre-existing conditions. That’s a huge victory, but what will the cost of that coverage be, and will I be able to afford it?

When I’m lying in bed at night, I often worry about how cancer may affect my future: my career, my relationships, my dreams. Sick people don’t plan on getting sick. We shouldn’t have the added worry that someday insurance coverage may not be there. Or that a medical crisis could become a financial one too.

It’s good to know I’m not the only one.  And special thanks to my parents who take their powers of attorney jobs seriously and know how to argue the sense out of bill collectors and insurance companies. 😉

Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.

Today was endoscopy day, or EDG day.  With PSC (primary sclerosing cholangitis) comes progressive inflammation and scarring of the bile ducts, yielding cirrhosis, or low liver function.  The uncontrollable scarring causes redirection of blood flow and bile and produces a phenomenon called portal hypertension.  In these cases, most of the liver’s enormous volume of blood gets shunted out the portal vein since the other veins and channels are blocked.  The result is high blood pressure through the vein (since its normally dependent on many other veins and channels as well).  The high portal blood pressure yields esophageal varices (large “balloons” of blood that collect in the esophagus with lack of a place to go), a rerouting of blood in the chambers of the heart, and so much more.

In sum, I’ve had portal hypertension for years, and my doctor monitors it by doing at-least annual endoscopies.  She goes in through my throat while I’m in general anesthesia, and whenever she sees one of these high-pressure varices, or “balloon bubbles,” she puts a tiny, tiny rubber band around it – which later falls off on its own -leaving the balloon nothing but a dead clot to fall away.  The procedure is emminent because of the risk of the varices.  At any moment in time, a single varice could rupture since the volume is just that great.  A patient with ruptured varices would likely hemorrhage before reaching the hospital.  

Then, the oncologist wanted a colonoscopy performed today, too, just to make sure the tumor in the liver isn’t anywhere else, so my own doctor performed that as well.  That part is honestly no big deal.  The worst part is the throat and chest pain after the EDG, and anytime she bands varices, there is a throbbing pain that just won’t stop.  Thankfully, she didn’t see any varices to band today (they have to meet certain criteria to be “bandable”), but there is still a lot of pain from the breathing tube, mouth opener, scopes, and all the bumping around in there.

And so I sit here and sip apple juice and graham crackers, thankful she didn’t find any real varices today.  I’m also thankful my mom was with me, my best friend stopped by (but I was asleep), and Jonathan spent a few hours watching TV on the couch.  (Don’t ask me what we watched – I was out!)

And thanks to you who have been pouring in the cards and sweet gifts… my mailbox hasn’t been empty all week, and I cannot express how much your love means to me.

Until next time…

Today was bittersweet because even though my pediatric GI of over a dozen years, Dr. Hupertz, is still overseeing my case, she had to send me to adults just for the nature of what my disease is turning into.  She’s almost been a second mom to me, and she’s helped me through far more than liver things.  She’s in the first picture with me, and in the second picture is Penny, the OR nurse who isalways there!  I like her because she lets me sneak my glasses into the OR and then keeps track of them and makes sure they’re on when I am awake.  She’s a rule-bender, but she’s a sweetheart, and you know she’s been doing this job forever.  She’s an angel.

So today was my last day, ever, in peds, and that in itself is so scary.