Just a bit ago
I wrote that I laughed at the idea of contacting Michael Moore with our story of insurance woes. What I meant was that I had a moment of dark humor when I realized that, in comparison with the type of stories Mr. Moore was likely uncovering, our story was likely relatively tame. When I read that comment, I remembered Badger's
own recounting of her attempts to fill a prescription
and find help to pay
for medical care for her husband's liver cancer. I also remembered my long-time friend, Karen, telling me with a sort of comic bemusement born of shock about the sense of freedom that came with lack of insurance coverage as her husband battled cancer. "A private room? Sure! Why not? We can't afford any of it anyway, so we might as well not afford the best, right?" Karen was a public-school teacher and her husband, who died several years ago, was a cop: the type of people whose public service careers might have been supposed to carry a health-care safety net supplied by that same public. Not so.
So here I am, some two weeks later, and I'm not laughing any more. The more I think about it, the more it seems to me that stories like ours should scare the hell out of people. It's scary because it seems so unlikely. Jörg and I were so sure that we were among the lucky few with top-notch insurance coverage. And you know what? We really are. I've often discussed our insurance coverage with others at the hospital, and the reaction is almost always, "Wow! That's great insurance." So if something like this can happen to us, you'd better believe it could happen to pretty much anyone. Here's what I mean (and if you will be bored by my droning on about our financial doings, please feel free to skip down to the next section, marked of by the squiggly lines):
Each person covered by our insurance has a 5-million-dollar lifetime maximum. This, in itself, makes our insurance better than most out there, especially when it comes to caring for a child, like Annika, requiring a lifetime of expensive medical treatment. When Annika was listed for transplant the first and second times, our insurance company passed the management of the medical bills over to a company devoted to managing transplant expenses, and nearly everything was covered at 100%. When some bill was denied, such as the time that the insurance balked at covering the rental of a blood pressure machine for checking Annika's BP when she was started on a new med, Jörg was able to call and work it out. Not without much effort and wrangling, and likely at the expense of his own blood pressure, but still he was able to do it.
That company managed Annika's bills until she was one year post-transplant, when we reverted back to our original insurance company's coverage. We had to adjust to life with far more co-pays, but still we felt lucky. Jörg used his flex account at work to set aside a portion of his income pre-tax for medical expenses. We had no idea how much we would be using, so he started at something like $1,000, and started keeping our receipts for out-of-pocket expenses, not including our insurance premiums. To our shock, we ran through that amount in just a few months (I think it was 3). Jörg has increased the amount he sets aside each year since then, and I don't think we've ever made it past 6 months before we've run through all that money.
None of this should have been a big surprise to us. I mean, we had a little girl born with liver disease which requires a liver transplant 75-80% of the time, which means a lifetime of expensive drugs and an increased likelihood of frequent hospital stays. This all adds up to a good portion of income going to medical expenses, despite excellent insurance coverage. But Jörg and I both took a rather stoic view of the situation. We had given birth to a baby with major health problems as a result of some cosmic lottery that we lost (biliary atresia, Annika's disease, is completely unpreventable, in that doctors still don't know the cause of it). We loved her; we adored her; we would change our lifestyle expectations however we needed to in order to care for her.
My plans to return to work, searching out a rewarding career once our children reached the age of 2, the boundary we set pre-pregnancy, became more unlikely, as we figured that one of us would need to be able to stay with her in the hospital for possibly long periods of time at pretty much any time, at a moment's notice. Not exactly the kind of lifestyle that meshes with most career choices. And, true enough, there hasn't yet been a year without considerable hospital time.
But even as our medical expenses have risen, and my options for bringing in my own income have disappeared, we still felt like this was simply the life given to us to live as responsibly as we could. We had the bad luck to have a child whose health issues taxed us emotionally and financially, but we had the good fortune to have a child with an amazingly sunny disposition, as well as a relatively secure job for Jörg with a steady, respectable paycheck each month.
Jörg, the very paragon of German fiscal responsibility, made sure we met our bills each month, and together we prioritized our list of purchases. We were careful to make sure that our spending did not outstrip our income, or at least not without a plan in place to pay it back as soon as possible. So, for example, I waited several years to buy a digital camera, and, when I finally did, we set a price limit that had me shopping in the "budget cameras" section of cnet
, and I'm still using that camera (enthusiastically) 3 years later, despite some alluring new ones out there that have fueled some late-night computer screen shopping (is that the new tech equivalent of window shopping?). We decided against getting a minivan when Frankie was born, mainly because, even used, their prices were so much higher than sedans with the same features. We set our thermostat at 64 at night, 66 during the day, and hope for sunshine.
And I don't write this to imply that we have denied ourselves in order to pay Annika's medical expenses and, Oh, Poor Us. Far from it. After all, having a digital camera and a non-minivan car and a lovely house in which to turn down the thermostat already puts us into the category of comfortably situated. I write this to make the point that we are the type of people that have followed every single bullet point written in every single article on maintaining financial health ever published in Time, Newsweek, and U.S. News and World Report, combined.
So we never even considered fundraising. Many, many transplant families we know do
fundraise, because, even with a good salary (even with two good salaries for that matter), the costs associated with a transplant (even with insurance) can be daunting. For those families whose jobs are less certain, the financial uncertainty of raising a transplant child is enough to overcome, quickly, the reticence with which most of us view the idea of soliciting help. It takes a village, and all that...but who wants to ask the other villagers for money?
And, you know, we shouldn't have to. If a family, making undeniably good financial decisions, with excellent insurance coverage, can still face financial ruin because of insurance shortfalls, then it is certainly time for a change in our insurance system in this country. The system is not working, even for those who are in the system. And, obviously, there are millions of people who are not even in
the system, in worse shape than we are. (There. I said it, Andrea.)
So my week of silence here on this page has been a week of non-stop work around our house. I put my mom on a train back home to Kansas City last Tuesday morning, after my dad called and said that he was having chest pains and skyrocketing blood pressure. While Annika was waiting in the hospital for transplant last time, my father had a heart attack, alone at home. With that memory in mind, we had my mom packed and on the train just about an hour after he called.
My dad was fine, as it turned out, but it was high time for my mom to have a break at home, anyway. She's been here watching Frankie for the past 3 months, and that's a long time to be away from home. Of course, without mom watching the girls, the unpacking and cleaning of the house slowed down to mom-with-two-young-kids pace, which is very slow, indeed.
Add to that the fact that Annika needed to see her pediatrician every day last week to monitor her blood pressure and heart rate, plus an exhausting trip to Chicago and back during torrential rain last Thursday, a trip to the ER to check on her suspiciously infected looking PICC line
(which then fell out, yes fell out
, while she was sleeping on the way back home), and the general exhausted malaise which inevitably follows a stressful period, and thus you have the lack of updates in this space.
Finally, though, the house is cleared of boxes and suitcases. The pile of laundry no longer towers over my head. And I have a small suitcase repacked with clothes for Annika, Frankie, and me, all ready for emergencies. Life around here again has some semblance of order.
The good news, which you may already have caught two paragraphs ago, if you were reading between the lines, is that Annika did not have to stay in Chicago last week. Hooray! We're going to take all the at-home time we can get. Her hemoglobin has been steadily declining, but not at the rapid rate of an acute bleed. So I'm guessing that we'll probably be heading back for a transfusion at some point, even if she manages to avoid another acute bleed. This is a scenario that I could live with, just going in every once in a while for a transfusion, but no more of those heart-stopping bleeds. I could live with that.
Meanwhile, Frankie has been enjoying having everyone altogether again at home. I've already been back home long enough for Frankie to take the lovingkindness of a mother for granted once more. Last week we settled in for an evening snack of cheddar and apple slices. I gave myself two slices of cheese and Frankie only one, given my adult status. Frankie had a good look at both our plates, then stuffed her entire slice of cheese into her mouth at once. Cheeks bulging, she reached over and grabbed my two slices. As I gave her a look she had no trouble interpreting, she deliberately finished chewing, swallowed, and then reached down and broke off a microscopic speck of cheese and handed it back to me. I held up the tiny speck of cheese for Jörg, who was silently observing this scene. "Do you see what she gave me?" I asked him. Frankie beamed me a smile and chirped, "OK! You're welcome!"
And Annika, having spent long hours with me in a tiny hospital room, has no trouble giving it to me straight. Driving to the hospital for labs last week, the girls and I were bouncing along to the mix cd I made of German music. Like any good child of the '80s, I sang along with real verve to Nena's "99 Luftballoons." After the first verse Annika informed me, in all earnestness, "Daddy's German is much better than yours."
That mix cd, by the way, is a real hoot. I was looking for some German music, figuring that might be the way to get Annika and Frankie excited about learning their dad's native language. This was my high school German teacher's approach, and she frequently broke out her guitar mid-lesson. Inspired in theory, it fell a bit short in execution, given that Mrs. Daniels had us singing things like "Where Have All the Flowers Gone?" auf Deutsch.
Not all of the songs on the cd are actually in German, but they are all from music purchased in Germany, including a German equivalent of a Disneymania cd, Toggo 9
. The Toggo collections are notably European in that most songs feature a beat suitable for dancing your ass off at 3 a.m. and includes songs like the one that samples Elvis Crespo's Suavemente
and features a lusty call for "Una Cerveza!" in a most un-Disney-like fashion. I originally purchased the cd because it listed the Kim Possible
theme song performed by a German group, and we do love our Kim Possible music around here. "Fun!" I thought, "I wonder what the Kim Possible theme sounds like sung in German?" Of course, it turned out that the version on the cd was just the English version, sung with a German accent. I discovered on another cd
such English gems as "The Pirates of Dance" (sample lyric: "We're gonna take you to another place/Where pirates dance and come from outer space!" My unofficial survey of German music aimed at kids finds a surprisingly high number of songs
). Still, I recommend these CDs highly if you're looking for something to complement a toddler sugar high and missing your bygone clubbing days.
So now that our house is again navigable, it's time for me to get down to my social responsibilities. Like the many, many thank you's that I owe, starting with the neglected note to Ralph
for his hospital concert
way back in September (for which I planned to include a cd with the little movie
of Annika's reaction post-concert) and going all the way up to my friend, Jane, who painted and decorated the plain, white walls of the girls' playroom as a welcome-home surprise for Annika*. And I'm going to have to contact COTA
to get a list of the on-line donors to Annika's newly-established fund
I'd really like to send a photo and note to everyone who sent Annika a card or cd or book or snuggly or craft project while in the hospital, and I did my best to hang on to return addresses in a plastic bag during our stay. But I fear that between the various moves among hospital rooms, Kohl's House, and home that I might have lost track of some of the addresses. Is it horrible to ask everyone to email me their address, so that I have an organized place to keep them? I promise not to add your address to any mailing lists or use it to track you down and stalk you, because who has time for stalking anymore?