Wednesday, March 22, 2017

How much does a heart attack cost? And what does that have to do with NEA cuts and iPhones?

I have really and truly wrestled with writing this post. Two friends of mine in particular asked me to write it when I blew up at someone on the internet in a dumb internet moment a couple of months ago because I started spouting the numbers, and they said it would be important for people to know exactly what happened to us, and why, and what it cost in actual dollars.

What this is NOT

This is not about politics, about Obamacare, about Trump or anything like that. This is about what happened to my husband and myself as a result of our choices. If you feel that you're in a position to pass judgement on us, please go right ahead. This is also NOT a plea for money. AT ALL.

What this IS

If you're a person who thinks that this is something that happens to other people and it can't happen to are wrong, and you need to stop. We spend too much time assuming that this happens to *not us* because we are (fill in the blanks: hard working, responsible, stable, whatever). You are not impervious to this.

On November 23, 2016, my husband, Travis Bedard, suffered a major heart attack at age 41.

He was outside clearing snow and slush from the walkway outside our house. He wasn't outside for long, and his sister found him quickly enough and started CPR while I called the ambulance.

The ambulance took him to the best possible hospital for him and we, of course, drove first to the wrong hospital. Eventually we made it to the right one (note: don't navigate in times of urgency using Apple maps), and we were ushered into a small triage area, curtain closed. Eventually a doctor came out and talked to me. It wasn't good. They were trying to get his heart restarted, but weren't able to yet. I knew that he was preparing to give me bad news. I believe the phrase that he used was "basically not alive."

We were ushered into another waiting room and friends of ours - Mark and Trish - showed up to wait with us. I was pretty numb through all of this. I know Mark was making calls to let some people know what was going on but I couldn't think of anything other than I can't do this I can't do this I can't do this. Mark kept telling me over and over, because apparently I was saying that out loud, that they would be there to help me do it. Eventually a very nice Greek man came in and told me that they had gotten his heart restarted. It had only taken two hours. He was still very sick, and on life support, and Dr. Greek wanted to do *something* involving putting him on bypass and then a bunch of OTHER stuff which I don't really remember (like, hypothermia for 24 hours, then 24 hours of slowly bringing his temp back up, then other stuff, then more other stuff, and then eventually seeing if he'd wake up). He needed my permission. I didn't understand what was being asked. Eventually I said "if I don't say yes to this, he dies, right?" and Dr. Greek said yes. "Then yes, do whatever, yes." He asked if Travis had a DNR. "I couldn't find his fucking driver's license you think he has a DNR?" was my answer. Travis had not made it easy to find identifying documents for the ambulance.

It started to dawn on me that I was the one who had to make decisions until he woke up. Like, that was my job. This is what being an adult suddenly feels like.

Hours later, I got to see him, hooked up to a million tubes, on bypass, on a ventilator, freezing cold, but alive, barely. Two very large tubes ran up his legs to his abdomen and appeared to be full of blood. That was keeping his heart going. Dr. Greek kept reassuring me that he didn't need the machines, his heart was beating on its own, but that they were there to give his body a rest and to let it heal. There were so many of them, though, it was difficult to believe that he didn't "need" them.

The GoFundMe

I was adamant that nothing about this go on Facebook or anywhere else online. I've found out about things through Facebook before, things that I would have preferred to learn about in person, and I didn't want that happening to others here. Travis and I have lived all over the country and have kept in touch with friends from as far back as 20 years ago, and lots of people wanted to start a Caring Bridge page and a GoFundMe page. They wanted to help. And I understood but...this was private, and we still didn't know which way things were going.

48 hours later things started looking a lot better though, once they had warmed him back up and tried backing him off the bypass. Eventually he went into surgery and they took out the big bloody tubes altogether (we played Dominion in the waiting room while this happened). Everything went smoothly, his heart was beating normally and the doctors said it looked like he hadn't even had a heart attack. But he was still on the ventilator. On Monday after Thanksgiving I called his work to let them know what was going on. Up until that point I wasn't really aware that he wasn't insured yet. Every job I've had for the past I don't know how many years had my benefits starting on day one - I just assumed his did too. But, when I spoke to his HR department, they told me that that wasn't the case, and that's when I learned about the December 1 date. And that was when I realized that private or no, we were going to have to accept help.

Trish launched the GoFundMe - I wanted to remain detached from it. Actually I wanted to remain detached from everything. We were trying to set things up so that I would be texted or called a minimum number of times but that didn't seem to matter - no matter how often we said "please contact these people for updates," my phone never stopped making noise. I eventually just shut it off. Trish set the initial goal for the GoFundMe at $10,000, and I was floored, utterly, absolutely floored, when it reached that in under 24 hours. I knew it wasn't going to cover the hospital bills but it would cover his lost income at least, and maybe a bit more. But really, seriously, who has friends like that?? I couldn't believe it. The damn thing was shared hundreds of times.

Travis's GoFundMe page as of 1/8/2017

I met with financial counseling at the hospital and the woman was very nice, and willing to meet with me as often as I wanted, but limited in terms of how helpful she was. At first it seemed really hopeful - there was this program, MNSure, and she felt certain that we would get that one week covered through that program. We filled out the application and I thought that was that. A couple of days later, she called to let me know that we were not approved. As with everything, our income was too high to qualify. I met with her to discuss next steps. She assured me that she had seen the total number we owed, and she showed it to me, and said that because we were uninsured we were going to be given a 49.4% discount off that amount.

Notes from that meeting

The total as of that date (this was early December) was:

-          49.4%

That number, $148,433.26, was what we could expect to owe for the week of uninsured care that saved his life.

Now, there were a couple of caveats added to this. One, there would probably be a couple of other bills that we would receive separately, such as one from the U of Minn Physicians, or another from radiology. Two, once his insurance kicked in there would be his deductible, however, he was likely to hit that within the first 15 minutes of coverage on December 1 (I think this would add something like another $5000). She said that once we received the bills, I needed to call to receive the discount, and that payments could be negotiated.

Honestly, at first, that number seemed ok. I was expecting something around $900,000, and so seeing $150,000 felt doable. Possible. I hadn't done any math, I just felt alright about it.

Other people balked at the number though and I found myself reassuring them from a place of having no knowledge.

Once we had the number, Trish raised the goal amount on the GoFundMe, and it continued to raise funds, but I really felt that we couldn't expect any more generosity from our friends - they had already shown us so much.

At 3:00am on November 30, the hospital called me to tell me that the breathing tube had been removed and he was awake. By the time I got to the hospital he was already sitting up in a chair. He was having difficulty talking, it took a lot of effort, and holding anything was impossible. I fed him ice chips. Within 24 hours though he was talking a LOT (if you know Travis, you know what he's like). His recovery actually went very quickly. The one thing that didn't recover as quickly as the rest of him was his kidneys. He needed several rounds of dialysis, and we weren't sure if that was a temporary thing or if it would be a permanent thing. Everything actually was really nebulous. When they first told me that his heart was beating again, way back in the beginning, they told me that "this will be a marathon, not a sprint," and I should expect a 4-6 week recovery period in the hospital after he woke up (if he woke up). But he seemed to speed through that much faster than expected and was out of the ICU relatively quickly. The original thought seemed to be that he would be discharged to inpatient rehab, in another building, where he would receive intense physical therapy until he was ready to go home. But eventually it seemed that he wasn't even going to need that. He was having difficulty walking, but was improving. The only thing they were waiting on was his kidney function. Finally on December 15 they took out the dialysis catheter and said that his kidneys were fine, and sent him home. That is a MUCH faster recovery time than anyone expected!

Bills Start to Come In

The bills started coming in while all this was going on however, and I started getting anxious. Three of them came in right away:
This is from the Saint Paul fire department, for the ambulance.
This is the anesthesia bill (obviously).

This is part of the U of Minn Physicians bill - the total is at the top.

I called the two larger ones (not the ambulance) and while they were willing to arrange payment plans, sort of, they wanted the bills to be paid off within six months. At this point, my big plan was to get my student loans deferred for two years, giving me an extra $500 per month to devote to these bills, and I was trying to figure out if that was going to be divided up somehow between each of these. But it became clear that these just needed to be paid - especially the UMP one. That one, if paid off within 30 days, would be discounted 20%. So, I took the money from the GoFundMe, and wrote the checks:

Saint Paul Fire Department -    $1875.40
Univ Anesthesia Providers -     $7281.59
Univ of Minn Physicians -       $5173.60

A second round of bills came, including a second Univ of Minn Physicians bill and two small Fairview Hospital bills:

Fairview Hospital -                  $289.46
Fairview Hospital -                     $96.49
Univ of Minn Physicians -     $5000.36

These bills took the rest of the GoFundMe, all of our savings, and my tattoo money (my 40th birthday present to myself, which I'd been planning for years and the appointments were made way in advance). I canceled the tattoo appointments, and made the choice to postpone it until next year (hopefully) because obviously every time I put money aside for it that money was going to be used for medical bills. (See, Jason Chaffetz? Sometimes it's NOT about's about tattoos.)

The other one, the hospital bill...this one took a long time to get finalized. For the longest time, the website showed an amount that I could only hope was not going to be what we owed in the end:

Screenshot from the bill pay website as of 1/8/2017

While I was at USITT the itemized bill FINALLY arrived, and the discount was applied. That bill is 25 pages long. I'm just going to share the final part with you:
The final page of our itemized FINAL bill

This shows that the grand total cost for his hospital care - not the rest of the bills that we've already paid, just the hospital portion - was $446,724.06. Health Partners covered everything after December 1, and the uninsured discount was applied, which brought that down to $149,663.46. There's another Fairview Bill for "professional services" that you don't see here but it's shown on the site, minus $300 I already paid towards it:

Screenshot as of 3/2/2017

So, here is what a heart attack cost us - mileages obviously vary:

12/5/2016   Univ of MN Physicians      $5173.60
12/6/2016   Univ Anesthesia Providers $7281.59
12/6/2016   St. Paul Fire Dept.              $1875.40
11/23/2016 Fairview Hospital               $  289.46
1/12/2017   Fairview Hospital               $    96.49
2/6/2017     Univ of MN Physicians      $5000.36
3/10/2017   Fairview Hospital          $160,336.70
Grand Total:                                      $180,053.60

The Big "WHY" Question

You should know, in case you don't, that no one prepares for a heart attack at age 41. There are a million things I wish we had done now, in retrospect, but they were choices made based on information we had at the time. The big one was that Travis was uninsured.

And yes I now hear the sounds of a million well-meaning people asking "why was he uninsured??"

Travis and I are working theater artists. I'm a designer, he is an actor. For years we have both worked full time desk jobs while maintaining simultaneous full time artistic careers - meaning typically 8 hour work days followed by 5+ hours of rehearsal or work in a theater for little extra money. We moved here in August 2015 so that I could take a job with Macalester College. This job represented a HUGE step up for us in terms of income and possibilities and future. This state boasts and insanely low unemployment rate. Travis is very skilled, has a great resume, great references. We honestly believed that he would be working in no time at all. When I enrolled in benefits for my job, we discussed putting him on my insurance but decided against it. Surely, we thought, he'd have a job within a matter of weeks. We'd both always been insured separately at our own jobs, and the cost of putting him on my insurance was significant. We took the chance because we didn't think it was going to be long at all.

But it was long - it was almost a year before he started working, and that was in a temp-to-hire position. That job became permanent in October, and the heart attack happened November 23. But his benefits weren't set to kick in until December 1. If he had waited eight days to have the heart attack, I wouldn't be writing this right now. I found out about the lack of insurance when I called his work to let them know on the Monday after it happened - I didn't realize until then that his insurance hadn't started. He hadn't even woken up at that point.

A couple of things to note here. One, it was just one week of no insurance. Even if we had put him on my insurance...that easily could have happened to anyone. I went without insurance for two weeks between Austin and Minnesota jobs. There are so many ways any one of us could have fallen through that crack - you don't need to have gone without for an entire year.

Two, we are incredibly, INCREDIBLY lucky. Our friends raised $14K for us on Gofundme. My family chipped in. His mom flew out. His employer helped out. We also don't have kids. And yet. With all of that, and two stable jobs, we were STILL screwed. So many people don't have those resources at all. Because of all that help we received, the first $20K in bills were paid in cash with little stress. And the big big bill is now on a payment plan - we are currently paying a smaller amount but hope to increase it significantly once my credit cards are paid off in two years. My math has us out of debt in eight years with this plan - no bankruptcy needed.

Three. We have worked our asses off. We have been insured for nearly all of our adult lives. We have been tax-paying citizens. We made a mistake, and we will now be paying for that mistake for the rest of our lives, at a time when we really want to be making good on the hard work we've put in to our careers at artists.

Travis is a non-Equity actor who works primarily in classical Shakespeare, has produced quite a bit of indie theater and does a not insignificant amount of arts advocacy. I've been designing professionally since I got my MFA in 2007, but it's largely been for experimental and indie theater in Austin, TX. I've been paid anywhere from $150 to $5000 per design - mostly between $300-$500 for Austin work. Some years I've made a couple thousand as a freelancer, and it has slowly grown to over $10K per year, which coupled with a full time job is great. But. We still struggled for several years and frequently lived paycheck to paycheck. Austin grew more and more expensive to live in. It takes a long time to build a portfolio and the connections that will get you the better paying jobs or the teaching position like the one I have now. I made the decision to start looking for teaching work because one, I knew it was time and I was ready to start teaching and building the program I was envisioning, and two, I was tired of office work and investing 8 hours a day in something that wasn't my passion. Once I began looking for a teaching position it took 3 years of applying, interviewing, investing in the process, traveling to interviews, before I finally got the dream job. In the Twin Cities, we both have access to so many  more opportunities in theater than we did in Austin and it's been huge for us.

So What Does This Have to Do With The NEA?

I think I mentioned that I'm in some significant credit card debt, and that the plan to pay off the medical debt basically involves rolling over my credit card debt payments into the medical debt payments once the credit card debt is gone.

Well, I do have a steady job, but that job relies on tenure. And me getting tenure is not a guarantee. I need to continue to work as a professional theater artist as part of that process.

Furthermore, the difference between paying off the credit cards in time to pay off the medical debt so we can keep to this timeline and...NOT...relies on extra income. Normally that isn't a problem. We can safely rely on a certain amount of freelance income for me each year because, for the past several years, I have been working regularly enough that it's been stable - basically all that extra income would be going straight to the credit cards.

Of course, the White House released its proposed budget this week, and it has a lot of people very upset. There are a lot of good reasons for that, many of which are MUCH BETTER than my personal ones, because people are in much worse situations than us. Cutting Meals on Wheels is absolutely disgusting. But to be honest, the only way it affects me is in affecting several of my friends who volunteer with the program.

Cutting the NEA, however...

Today I looked at the complete list of companies and projects receiving funding from the NEA in 2016. It included:

The Fusebox Festival
The Rude Mechanicals
Forklift Danceworks
Texas A&M University
Mixed Blood Theatre Company
Open Eye Figure Theatre
Red Eye Theater

These are all companies that have paid me money to design for them in the past. Two of them last year. One of them right now. In short, the NEA is funding my design fees, which are helping to pay Trav's medical bills.

Three of those are Minneapolis companies with whom I would like to continue working - what do these cuts mean for those companies? And subsequently for the artists they hire? We aren't volunteers - we are also workers, and while I may be one who has a graduate degree and is teaching at a private liberal arts college I can guarantee you that's not the majority. Many of those companies are hiring electricians, carpenters, painters, stitchers, as well as designers, actors, and other artists who work very long hours.

Why is our labor less valuable?

About that iPhone, Jason Chaffetz

By the way, I'm waiting for my iPhone 7 to arrive. It will probably come while I'm at my appointment with the neurologist, where I will have to explain that once again, all the circled dates on the headache calendar are stress-induced because of Trump, bills, internet fights, and now NEA cuts. And so I won't have my phone, because I need to sign for it, and the cats won't. Because they don't love me enough.

My last iPhone purchase was in 2014. I remember it VIVIDLY. I bought a phone ONLY because I dropped my previous one on the pavement while on my way to meet Liz Fisher for lunch to discuss Deus Ex Machina. That phone, the one I broke, was my first iPhone, which was bought in 2011.

The one I bought in 2014 is an iPhone 5. I didn't get the 6 because I broke the damn thing before the 6 came out, and the 5 was cheaper, and I don't really care. Today, this phone may or may not recognize my thumbprint. Or respond when I touch it. The other day I dropped it in the snow and it shut off for several hours. The battery lasts about 6 hours before I need to recharge it and that's only if I get a good night's sleep the night before, because if I'm up all night then I'm probably on my phone trying to distract myself. And, most importantly, every time Third Cat does something stupid and I go to take a video of it, I get the "there is not enough space" message.

Not having a cell phone isn't really an option for me anymore. I wish it was. I was one of the last people on the planet to get one (I waited until 2006, and then only because Travis made me before I left for Cincinnati for the summer). I don't think I need to go into why, but I will lose income if I can't take calls from directors.


Monthly cost (to me) for health insurance:                                     $158.89
Monthly minimum payment for Trav's bill:                                    $300.00
What it would have cost monthly to put Travis on my insurance:  $482.58
What it would have cost monthly to put Travis on Obamacare:     $313.34

Monthly cost of new iPhone:     $36.58

Dear Representative Chaffetz: I think you're buying your phone in the wrong place. You might want to look at that - they're charging you WAY too much.
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