One Year

It has been one year.

One year since I found myself gasping for breath, heart racing, sweat pouring down my face, and my vision fading to black. One year since I came back to consciousness on a sidewalk surrounded by strangers. One year since I was rushed to the hospital and admitted to the ICU. One year since I had to deal with insurance companies who did not have my best interests at heart. One year since life on blood thinners as the “new normal.” One year since developing an intense fear of my body and the unseen killer inside me.

And…

It has been one year.

One year since I learned how to stand up for myself against the health care bureaucracy. One year since I renewed a commitment to paying close attention to my body. One year since I offered my gratitude for being given a second chance against a condition that very well could have killed me. One year since I discovered just how intensely I am loved.

It is amazing what gifts one trip around the sun can bring. Not the least of which being the mere fact that I am alive to appreciate it.

May we all thrive.

credit qbg903 freeimages

Photo Credit: qbg903, freeimages.com

 

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“God wants you to have babies.”

In my last post, I talked about coming to terms with a procedure that would effectively render me infertile. I had made my peace with the loss of a choice to have children, and was actually looking forward to having minor surgery that would improve my quality of life. I made the appointment to have the pre-op conversation with my doctor and get the ball rolling, hoping to have this taken care of before Thanksgiving.

About four hours before my scheduled appointment, I received a call from my doctor’s office saying that my insurance wasn’t going to cover the procedure. That was frustrating enough. Then the office manager outlined the reason why … and I wanted to break something. My HMO is with a medical group run by a Catholic hospital – and because this is a sterilization procedure, they won’t cover it. “Fine,” I said. “I was hoping to change to a different medical group, anyhow. What about my other HMO option with Presence?” Turns out they’re Catholic, too.

I have been pretty lucky in my life not to have to deal too closely with the intersection of conservative social views and healthcare. As a woman, it has always been on the periphery of my awareness – but until recently, I have never had to do much with gynecology beyond my annual physical exams. So ramming headfirst into a restriction based solely on the belief that “women should make every effort to have babies” is incredibly jarring.

I don’t want this post to imply or turn into Catholic-bashing. There are some very dear people in my life that are Catholic, and are likely reading this right now. This isn’t about Catholicism as a whole. But I do believe that religious views, no matter the denomination or faith, have no place in the healthcare system – particularly when it comes to insurance coverage. I talked before about looking into patient advocacy as a career or at least a volunteer option. I’m feeling that pull again after this experience.

I’m planning to fight this decision. My doctor’s office should be calling me with more alternatives later today, and word on the street is that if it’s medically necessary (and it is) then the doctor should be able to override the restriction and get the insurance company to cover the procedure. So it’s not a done deal yet. But it made for some feelings of hopelessness and anger. A night of pizza, bad TV, and video games helped, and I’m in a better space today.

Just for fun, I will leave you with this brief snippet of an online conversation with my good friend, Jason, when I was filling him in on my frustrations. (Edited and posted with his permission.)

Me: According to the insurance guys my boss met with, if my doctor can convince the insurance company that my procedure is medically necessary, they have to grant it. So I am going to see about fighting this thing when I talk to them.

Jason: Good. Because “God wants you to have babies,” is not an acceptable response from an insurance company.

Me: I feel like I am in the Middle Ages or something.

Jason: Maybe you can use a course of leeches.

Me: That will remove the demon in my lungs for sure.

Jason: Good idea!

Jason: Oh, wait… You’re a witch.

Me: Crap.

Jason: So it’s probably best to go ahead and set you on fire.

Jason: Now, there IS a copay for that procedure…

Jason: But it’s cut in half if you use the generic equivalent!

Me: What’s the generic equivalent of “burning at the stake”?

Jason: I’m glad you asked.

Jason: The generic equivalent is actually just like burning at the stake, only you have to hold very still all on your own. So it would be better to refer to it as “burning” rather than “burning at the stake”.

Jason: Of course, you could bring your own stake, if you like.

Jason: We’re committed to providing you with an excellent execution experience.

Me: What if I spelled “stake” like “steak”, and just burned that, instead?

Jason: That would be fine, too.

Jason: But to be clear, we’re still setting you on fire.

Me: Crap.

Plot Twist, Part IV

I have been home for about four days now, and each day I get a little better. I feel my energy slowly returning, although I do have moments where it’s clear I need to take it easy. The home health nurses have visited, and my vitals are all normal and stable, which seems to bode well. I am following the doctors’ instructions to the letter, and hopefully, things will continue to improve.

The frustrating things right now are a) I am a super-bored and under-stimulated extrovert, b) My blood thinness level (or INR level) is not getting into the therapeutic zone very fast, and c) my insurance company continues to be a source of stress.

Fixing problem “a” will just take time. I have friends I can reach out to, and hopefully can sweet-talk them into more visits, boardgames, or Netflix. I am sure I will get back to my social-butterfly norm soon enough.

Problem “b” … I am extremely frustrated by this for a few reasons. One, I just want to be done with these damn Lovenox shots. They hurt like hell, and I will only have to take them 2 more days once I hit my level. And when it comes down to it, not being at the therapeutic level just makes me feel scared and unsafe. I know I am not completely safe even when I hit the therapeutic level, but there’s something about that number that feels like additional security. But… trying to find a silver lining here … if it’s taking this long to get me to the right level, then chances are my blood won’t modulate that much once it does get there, and I can hopefully stay fairly stable for the duration of my time on blood thinners.

Problem “c” … Just a few short hours ago, the home health nurse that has been managing my case called and said that my insurance company no longer considered me “home-bound,” and was therefore canceling my home health visits. All further tests needed to be in a lab. Technically, true. I actually drove to the office today to pick up some work so I can ease back into my job. However, they called way too late to allow me to set up an appointment to meet my new doctor and get an order for the lab, and after a couple increased Coumadin doses, I need to be tested tomorrow. I spent a good hour on the phone with about 10 different people trying to figure out how the hell I can get tested and who could do it. I just kept getting passed from person to person with no real results. Finally, I took matters into my own hands and called the insurance company and somehow talked them into letting me have one more home health visit, then go to my primary doc on Friday. Miracle of miracles, they saw reason, and I got my wish. There might have been dancing in my living room after I pulled that off. I can neither confirm nor deny that fact.

I am so switching to a PPO as soon as humanly possible. That way I can keep my gynecologist and go to the doctors that know me and my case. I hate the health care system in this country so much right now. And yet… I am not balking at the fact that they are paying for what is likely a horrendous medical bill. Mixed blessings, indeed.

Meanwhile, this whole experience has me thinking about where my life will go moving forward. I still haven’t given up on what I feel is my work in this world – to provide experiences for others. And I have a couple new and emerging outlets for that sort of thing. But I am also feeling a pull towards exploring patient advocacy as a potential career field. It might be a way to channel some of the rage and frustration I feel in dealing with my own insurance debacle into some constructive energy that can help someone else with less of a voice. It’s an idea that keeps floating to the surface of my thoughts, so it might be worth checking into, at least.

I think this will be the last blog post in this series for now. I’m sure there will be more hoops and hurdles to talk about as well as victories and blessings. But I feel like I am ready to release this particular chapter and see what the rest of my story holds from here on out.

Before I leave the topic entirely, I just want to acknowledge the incredible support and love I received from folks near and far while I was in the hospital. There’s no way I can thank everyone who sent a note at just the right moment, or visited during a time when I really needed the company, or held me in their thoughts while I was struggling. I tried to get back to as many people as I could, but I know that I missed some. If you are one of those people – do not mistake my lack of response as ingratitude. I still read the list of Facebook comments on my initial announcement about my hospitalization each day. It may seem like a trivial thing to comment on a status, but those saw me through some pretty dark moments.

Never underestimate your impact.

Plot Twist, Part III

The continuing story of my recent hospitalization and health scare. Part I is here. Part II is here.

Let’s do a thought experiment for a moment. Say you are a health care provider, and you have a patient who just faced a life-threatening episode like… oh… let’s say a pulmonary embolism. She is in the hospital, and has been there for four days – one of those days in Intensive Care. Her case has been discussed in detail by a team of lung and heart doctors, all of whom have come to consensus on her treatment plan. She is currently in the Telemetry Unit, where she is being monitored very closely and is getting consistent tests and medication. 

Got all that? Okay. So, would you:

a) Keep monitoring her carefully to ensure that she returns to health as smoothly as possible, under the watchful eye of a medical team that knows all the details of her case.

b) Transfer her to a different hospital on the opposite side of the city where she has never been, and give her over to an entirely new set of medical professionals who don’t know her case at all, and could dramatically change her treatment plan if they wanted.

If you answered “b,” then you likely work for my insurance company. 

The great thing about HMOs is that they cover a larger percentage of your medical bill, and they are a bit cheaper than PPOs. I am all for both of those things. The downside is that in order for them to cover you – you have to remain in-network. When I collapsed, I really didn’t have a choice to go to an in-network hospital. The paramedics took me to the closest one, which happened to be St. Francis. My insurance company is cool with that. If it’s an emergency and you’re admitted, there’s not a whole lot they can do. They’ll cover it, even if it’s out of network. But… my stay got longer and longer as my blood refused to get thinner. And once I was stable enough, the case manager at my insurance company started to insist that I get moved to an in-network hospital, despite the fact that the doctors at St. Francis understood my case intimately. I was furious. And that didn’t help my blood pressure, or my ability to recover smoothly. 

I was assigned a social worker, who rocked the house. She did everything she possibly could to try and convince the insurance case manager that I shouldn’t be transferred. She offered all kinds of options, including one of the more common ones — discharge me and let me be at home and be monitored by home health care nurses. I would have to give myself subcutaneous shots twice a day, but that would be small change compared to having to go to a completely new hospital with a completely new treatment team. The case manager was having none of it. My social worker was at her wit’s end. She told me several times that she had never experienced this level of pushback from anyone before. I got more and more disheartened as the battle continued. Finally, my social worker had to give in to the insurance company demands, and I was scheduled to be transferred as soon as a bed at the other hospital opened up.

Why don’t I have my HMO set up with the hospital that is closest to my house, you ask? My gynecologist recently changed networks, and she was fixing another problem I was having by means of the birth control pills. I really like her, so I wanted to follow her. I hadn’t set up my new primary care doc yet – which is something I now realize I should have done immediately after changing networks. (You may recall that I have been somewhat lackadaisical about my health care up to this point. No longer.) Now, those birth control pills are trying to kill me – and I am looking at recovery maintenance with a doctor I have never met. I don’t anticipate it will be too much of a problem once I can get situated, but it’s a level of stress I really didn’t need. Once September 1 rolls around, I can change my primary care doc back to the ones who know my case – so I only have a few weeks to juggle things around.

So for about 3 days, I was on edge, wondering when the dreaded call would come in from the other hospital saying that they had a bed open. It was entirely possible that they could call at 3am, and the ambulance would come for me in the middle of the night. The folks at St. Francis thought it was ridiculous, but they were ready to comply for fear that my insurance company may not pay my bills otherwise. 

The blessing in all of this turned out to be that Telemetry beds are hard to come by. One never came available – and my social worker finally talked to a manager who saw the light and approved my discharge with home health care. I had to wait several hours before I could be released, thanks to my injection schedule – but I didn’t care. I was going home! This is me within a few minutes of getting the news:

Image

(One of my friends mentioned this also doubles as my “This… is… SPARTA!” face. I approve.)

I mentioned in an earlier post that I went without health insurance for many years. I have lived in Chicago for about 12 years now, and I would say that I have only been covered about 4-5 of those years. I can’t say that I enjoyed not having benefits, but as a reasonably healthy young adult, it seemed risky, but not fatal. Now that I am looking 40 in the face — I may hate my job, but I am very, very glad that I have health coverage. My boss may be crazy, but she also has these moments of pure, jaw-dropping generosity … and she is paying me for the time I have been off. Considering I am still not back at the office and am somewhat in limbo about when I will return – that is a huge gift that I will not take for granted.

So while the insurance debacle was a huge source of stress during my final days in the hospital, I am also aware of what a major privilege it is to have it. I can’t begin to imagine what I would be going through now if I had to face those bills. I don’t even want to contemplate it. 

Coming soon: The road to recovery and thoughts toward my future.