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

 

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:

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(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. 

Plot Twist, Part II

A continuation of my series on my recent health scare. You can read Part I here

There is no night in the ICU. They dim some of the lights, but not enough for a light sleeper like me. There is always noise. Those of us lucky to be guests in this unit are under constant supervision – so unless you’re in a coma, there’s not a lot of rest. Visiting hours are also 24/7, which is completely understandable. If something goes wrong in the middle of the night, you don’t want to wait until 8am to see your loved ones. 

There is also very little privacy in the ICU. No one has their own room, despite what they show you on TV. Each bed is separated by a curtain, and most of the time, mine was wide open so they could keep an eye on me. (It was also slightly less claustrophobic that way.) Ergo, I could see and hear everything that was going on around me. For instance, I witnessed the immediate aftermath of one death. The patient was surrounded by several family members who formed a slow procession behind the gurney as they wheeled their loved one out for the last time. A few of them tried to smile at me as they walked by, but most of them were lost in shock and grief. It was a difficult and beautiful thing to watch at the same time. Whoever passed, they passed with the love and support of their family.

The realization that I was in the same unit as the person who just passed didn’t come right away… but when I was lying awake at 2 in the morning as the automatic blood pressure cuff started inflating as it did every hour, and the monitors I was hooked up to chirped a little at my high pulse rate — it hit me, and hit me hard.

Shit. I could have died. I still could.

I don’t think I have ever felt more scared and alone as I did at that moment. It was incredibly humbling. I am in my late 30s. Mortality has always been sort of an abstract concept rather than an integrated reality. And the truth is, I still could die from this. Even right now as I am writing about it. But the fact that I haven’t had any symptoms remotely like what happened during “The Event,” my vitals are normal, and my energy is returning … chances are pretty darn good that I am going to be just fine. I just need to let the blood thinners do their work, and be very regimented about my recovery. (And you better believe that I am following the doctors’ orders to the letter. I am NOT going through this again.)

One thing I have to say about the ICU is how incredible the nursing staff was there. They should all be sainted. I didn’t see any one of them lose their professionalism, even when they were joking around. They knew how hard it was to be there, and they did their abject best to see to my needs and my comfort, despite the fact they were dealing with some challenging patients – such as the Polish guy whose lucid moments were in English and his delusional moments were in Polish. Loud, screaming Polish. And sadly, his delusional moments were more common. Then there were the brother and sister sitting vigil with their mother. I will not deny anyone the opportunity to do just that – but please keep it down for the rest of us. They were loud talkers… all night long, and quite demanding of the nursing staff.

My only complaint about the medical staff was during morning rounds with the attending physician. I mentioned that each bed is cordoned off by curtains. You can hear everything. Therefore, if you’re discussing a patient with a serious medical condition, it might be best to either a) open the curtains and acknowledge that she is there or b) go outside where she can’t hear you. The attending stood outside my closed curtains and said something to the effect of, “If she throws another clot, she’s gone. She can’t take another one,” along with a bunch of other equally scary statements. I was literally 3 feet from her. No one was with me. And I was terrified. 

Then the parade of doctors came through – pulmonologists, cardiologists – each with their own idea about how best to treat me. I had an echocardiogram of my heart and ultrasound on my legs. Everyone then started offering me increasingly scary options that included everything from giving me a blood thinner regimen that could cause me to bleed in my brain or stomach to two different kinds of surgery. The aggressive blood thinner approach scared me because if I have learned anything from this (and past experiences with medication) – if there is a side effect, I am going to get it. It’s what makes me special. And surgery… gods. I didn’t want to contemplate it.

I apparently fall in a very gray area when it comes to these aggressive treatments. For some people it is very clear that they absolutely need it, others absolutely not … but I was a risk that could go either way. So the pulmonologists eventually won out and we went with the more conservative approach – which is a blend of less-aggressive blood thinners that would get me to a therapeutic level that will ideally dissolve the clots. 

The conservative approach appeared (and still appears) to be the right decision. When it looked like I was stabilizing and my vitals remained normal for 24 hours – I got moved to a private room in the Telemetry unit. Still under constant supervision, but my monitors were wireless. I could do things I take for granted like go to the bathroom by myself. I had a door I could shut and lights I could turn out. But most of all… I had the doctors’ increasing confidence that I would pull through. And that was what I chose to focus on at that moment.

Next up… adventures in the land of HMOs.

 

PLOT TWIST!

Yesterday, one of my gaming buddies posted this little gem on my Facebook page:

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Then he said he would grab more popcorn.

The last few days have been pretty harrowing. Last Sunday, I woke up feeling a little off-kilter, but I pretty much ignored it, thinking it would go away after I had some breakfast and coffee. I had a guest coming over later that afternoon, so I figured I had time to run out and get something. I got home late-ish the night before, and thanks to the parking situation in my neighborhood, I had to park pretty far away. So I decided to pull on an old pair of jeans and a sweatshirt and head out to get my car and a decent cup of coffee.

Lesson #1: You know that old adage about not wearing ugly underwear out of the house, because you never know who might end up seeing it? Yeah… my first mistake was the granny panties.

Before I left the house, I made my bed, and actually got winded doing it. I felt my heart racing a bit, and was pretty short of breath when I was done. I had been feeling some similar things earlier in the week, but figured I would call my doctor this week and see what was up. Besides, I really wanted that coffee.

Lesson #2: If something feels wrong, don’t wait to call the doctor.

Now, I kind of feel like the stupid girl in an old-time horror movie where the audience knows exactly what is behind the creepy attic door, and they start fruitlessly yelling, “No! Don’t open that door!” And she always opens the door. And tragedy happens. I wish I had an audience screaming “No! Don’t go for coffee!”

I left the apartment, despite feeling winded, and walked about half a block away before my heart started racing, sweat started pouring down my face, and I could barely breathe. Continuing along the movie theme, the world faded to black (literally.) The next thing I knew, I was coming to on the sidewalk surrounded by two guys I had smiled and waved to on my way up the block as they were working on their car, and a woman who was out walking her small terrier. The guys were staring at me, wide-eyed, and the woman was on her phone with 911.

I must have come to fairly quickly, because the ambulance hadn’t arrived yet, and I was able to state my name and age when I talked to the emergency operator. But I was far from normal. I felt extremely weak and foggy-headed, and I really had no concept of what was happening. I do remember thinking, “An ambulance? Really? I just fainted. Give me some water, and I’ll be fine.”

The ambulance arrived, and by then I was dripping sweat, despite it being a very cool morning. They took some vitals and determined that I should probably go to the emergency room. That’s when I started to get a little scared. Not so much about my condition — but about whether or not my health insurance would cover this. I lived for a good 10 years without insurance a little while back, and while I am covered now – I still get palpitations thinking about being able to afford anything. I live in an ingrained scarcity mindset when it comes to my health.

Lesson #3: I need to work on getting over that scarcity thing.

Up until this point, I have only ever ridden in an ambulance once – back in high school when I volunteered for a disaster drill for the local volunteer fire department. I got to die a dramatic death and wear makeup for that scenario. This time, I was unshowered and wearing my grungy jeans and granny panties. (And of course, one of the paramedics was really cute. Sigh.) They determined that my condition was serious enough to take me to the closest hospital, so it was off to St. Francis in Evanston.

The emergency room experience was humbling and terrifying, although the medical staff was wonderful. They put me in the “chest pain” unit, even though I wasn’t having any – but my symptoms were obviously cardiopulmonary. They stuck IVs in my arm, kept checking my vitals, asked me all sorts of questions. As soon as I told them I was on birth control – they immediately ordered a CT scan of my lungs. Lo and behold… the scan revealed a few blood clots, including one huge one that apparently was the reason I collapsed, and they immediately admitted me to the ICU.

I am single. I live alone. I am 500 miles away from my immediate family. All of these are, to varying degrees, deliberate choices that I am pretty much fine with. But the downside of each of those choices came crashing into me all at once and I felt very, very alone – particularly when I was going through the ICU admission process.

But soon, my family of spirit started to arrive. And arrive. And call. And arrive some more. And email and text me constantly. Some even offered to drive a few hundred miles to be with me. It took me 24 hours to post what was going on to Facebook, because I really didn’t feel comfortable letting everyone know right away – but once I did, the outpouring of support was overwhelming. I am crying right now just thinking about it.

Lesson #4: I am loved. (And this might be the hardest lesson to truly integrate.)

I have a lot more to write about this experience, so I will break it up into a series of posts. This doesn’t even begin to describe all the plot twists. But I will reveal the end of this particular episode: I am alive. As one of my friends posted, “Your story isn’t done being written yet.” I am absolutely taking that to heart.

Coming soon: Plot Twist, Part 2 — The Attack of the Potential Side Effects, plus Delusional Ramblings in Polish