So many of you know I’ve been waiting nearly three years now to get some type of medical insurance coverage, since the acute episode that almost took my life and hospitalized me, twice, for more than a week each time. I was eventually diagnosed with diastolic (left-sided) congestive heart failure, chronic thromboembolic pulmonary hypertension, both of which can be terminal conditions–though if treated, CHF doesn’t have to be terminal, untreated CTEPH always is. Eventually, CTEPH will lead to right-sided heart failure, and since my left-side is already having trouble, well, my heart is not doing so well. What’s so sad about all of this is, I had absolutely no symptoms or risk factors for heart problems. My cholesterol was good, triglycerides were good, nothing above normal for plaque and other things. My blood pressure has always been ridiculously low and my heartrate was always perfect. I was moderately active and height and weight proportionate, and while I could have eaten better, I didn’t eat bad compared to what most do. I should NOT have had heart problems.

I don’t have diabetes. I don’t have high blood pressure. I don’t have any of the things that usually go along with someone having congestive heart failure and at only 42 years old, I’m too young for it as well. It’s not in my family either.

The reason I point all this out to you is this: There was nothing that could have prepared me for or made me suspect that I would EVER get congestive heart failure. Nothing.

Some Things You Can’t Plan For

And then one day, for reasons we still don’t know or understand (and probably never well, since they no longer do genetic testing on these things to determine causes, since the testing won’t change the treatment protocol and it’s too expensive to do just because you want to know why), one day, I threw several clots large clots from my legs and my abdomen, and they went through my bloodstream and into my heart, where they dialated valves and clogged things up in my pulmonary artery and then moved on into my lungs. I suffered ischemia, which is an interesting word that basically means I had a heart attack–not the type of infarction you’re used to seeing television, but a heart attack nonetheless, and probably multiple ones. When I was admitted to the hospital, I was in full congestive heart failure and had active PEs and my lungs were just full of clots.

And I nearly died.

Most people who go through what I went through do die, from a medical term called ‘sudden death’. But somehow, for some reason, I did not die. I’m glad for that.

But recovery from this has been a long road, a longer road than I think anyone outside of my family can possibly understand. I gained so much fluid weight from this condition that I literally sloshed when I walked. I could barely eat, because the fluid was up around my stomach and pressing on it from the outside–it was like a non-surgical stomach reduction! But it made me nauseated all the time–and I still have to fight this fluid build up all the time (which is why I’m fluid restricted to only drinking 1- 1 1/2 liters of fluid total per day–a real pain to someone who loves to sip cold ice water all day long!)… I was fat, sloshy, and unable to breathe for months. But slowly, the medication started getting the fluid off me, and slowly, I started breathing better. I got oxygen therapy, which I wear 24/7 now, and it makes me feel a lot better.

The total cost for saving my life? Well, we haven’t calculated it down to the penny, but the first year averaged about $2800 per month. Second year was about $2300 per month and this past year has been a little easier on us at about $1800 per month. Medication isn’t cheap. Seeing docs regularly isn’t cheap. Staying out of the hospital isn’t cheap but then neither is going into the hospital.

Staying Alive Ain’t Cheap, Ya’ll

And these are just the direct costs: medication, treatments, doctor’s visits, hospital stays, tests, etc. This doesn’t include the time off work other people who are with me have to take. It doesn’t include the cost of their meals and travel when they stay with me in the hospital or the folks who have to come visit me there. It doesn’t cover the lost wages and time from my not being able to work much at all during this mess. That’s JUST the direct costs.

So over the three years, our direct and indirect costs are in the neighborhood of about $200,000.00—easily. That’s nearly $70,000 per year in medical costs for just me, just to keep me alive, and because we don’t have insurance, it was the bare minimum of testing and such. I know most people who are my friends don’t even MAKE 70k per year, much less have to spend that much on medical care alone–how would they have coped? How did I? I am so blessed that the money came from somewhere and was available when it was needed, and we managed, and managed to pay our bills, but I can’t lie and say it hasn’t been damned hard to do it on all of us. We managed. We did it, but it hurt. And we often made hard decisions about what to buy and what to spend money on and which tests could wait and which needed to be done now–and we didn’t do quality of life care like pain management at all, or buy the $700 per month lidocaine patches that helped my back so much when I was in the hospital, because they were too expensive for something that ‘wasn’t necessary’. Pain pills were cheaper, and they worked mostly okay, even if I wasn’t able to think when taking them. Tradeoffs. Life has become about bargains and tradeoffs.

Then Enter Insurance

Oh, my gosh… when I got insurance finally (Medicare), do you have any idea what it felt like to register at the doctor’s office and not be asked for a pre-payment? Or to be told by the ENT that he needed to scope my nose and not have to ask, “How much is that going to cost?” and instead ask, “Why is that test necessary?”

The power this gave me, the feeling of freedom it gave me… I can’t even tell you what it feels like to sit here now typing this to you and to know that if I needed to go to my doctor today or if I needed to go to the hospital today, it would be covered and my family won’t have to pull out their checkbooks before we decide to get in the car to go save my life!

You have no idea, unless you’ve been there too, what this feels like.

I’m not talking about simply not feeling well and wishing you could go get some antibiotics or something to feel better. I’m talking literal life-of-death situations here, in which we had to decide if we could afford to save my life or not. You have no idea how worthless you can feel sometimes when your life becomes valued in dollars and cents.

Then, your life gets saved, but quality of life is nonexistent, because you can only afford to pay for the major medical stuff. Things like a little sinusitis that makes you feel lousy all the time, that’s not life threatening, so it can wait.

That $900 nasal scope that I had done at the ENT’s the other day, Was it really medically necessary?

The answer is, No, it wasn’t. I could have been treated without it. But I couldn’t have been treated as well and it might have taken longer to know what was causing the problem, we would have had trial and error with medication that might not have fixed the problem, and additional doc appointments to deal with that. And in the end, I might have actually had cancer or polyps that could have been a big deal, but they would have been missed because I didn’t have that scope done, because it wasn’t ‘medically necessary’ and I couldn’t afford it. But over time, it could have cost me a lot more and it might have even cost me my life.

I’ve been waiting on multiple tests until I got my insurance, several thousands of dollars of tests. My life have literally has been put on hold, with us hoping that I would hold out and stay healthy enough to wait until Medicare kicked in so I could move forward. If I didn’t have Medicare right now, I probably would be dead inside a year or two at most. Now, I have a chance of maybe, if I can get all this done and get my comorbidities under control, I might actually be eligible for a cure surgery some day in my future. A cure. The only thing standing between me and that potential cure was insurance.

WHAT ABOUT OTHERS LIKE ME

There are other people like me out there right now who are sick, who haven’t gone to the doctor or haven’t gone back, who haven’t gotten the tests they need because unlike me, they didn’t have family who could afford to support them through their struggles.

Some of them will die waiting for help.

Do I support Obamacare? Do I support the Patient Protection and Affordable Care Act?

Yes, a resounding, yes!

I DO NOT, however, think it’s by any means perfect. There are many things wrong with it that need fixed, and I think that over time those things will get straightened out–I hope. I pray. But in the meantime, I do think it’s going to save lives. If more people can feel like I feel right now, that sense of relief and freedom… that knowledge that if I get really sick again, I don’t have to decide between losing my house or my car or all my assets in order to just stay alive, that feeling that I don’t have to decide whether paying for a test or a bill means we won’t get to eat next week or that my kids won’t get fed or that I’m going to lose things of value to me just to stay alive… I would give so much for everyone to have that feeling of security that came to me the day I got my Medicare card in the mail and was able to make long-awaited appointments.

If the ACA can bring that to people who might otherwise lose their life–or their life as they know it–people who might DIE waiting for being able to afford treatment… then it’s worth it to me to try to make this work.

It’s not perfect. There will be people getting tests that aren’t medically necessary. There will be people who don’t pay into the system. There will be people who lose their level of coverage and have to adjust. It will ‘hurt’ some people… that’s true. I know it. I get it.

But I’d rather one person lose some of his health insurance benefits and have to pay a slightly higher premium for his coverage than for another person to lose their life or a loved one because they couldn’t afford a cancer treatment that insurance would have covered if he’d had it… or  like me, when the person gets hit with something totally unexpected and unexplained, out of the blue and rare, that I never could have planned for. And in the end, that costs us all too, with survivor’s benefits paid to spouses and kids when loved ones die because of lack of health insurance, and they go to the hospital severely ill and rack up bills their estate can’t pay before they die. Or the widow/er has to go on welfare to support themselves. The loss of a productive member of society paying into taxes and stimulating the economy. It hurts in other ways when someone needlessly dies like this… or becomes productive due to health, so hurt more upfront, save more on the backend. Life is always about these tradeoffs. This is no different. It’s going to cost you in some small way, no matter which way it goes–isn’t it better if the cost to you is toward a possible solution or improvement instead of just maintaining a broken status quo? Isn’t trying SOMETHING better than just doing what we’ve been doing all along knowing it’s broken? Insanity is defined by doing the same things over and over and expecting different results–it was time to do something different.

So yeah, for me, it’s not about redistribution of wealth or a socialist plan or a communist state here. I am not asking for the rich to give up anything they have to equalize and have the poorest have the same amount and level of care. This isn’t about everyone share and share alike or some type of a Robin Hood plan here. But I really don’t have a problem paying a little bit more into a system that also benefits me in order to save the life of a fellow human being either. That’s my part of living in a society where we are interdependent on one another for everything. It’s part of being a citizen and a good human being. Every person we lift up individually lifts us all up as a whole.

It’s not socialism. Maybe it’s humanism, I don’t know.

To me, it’s just common sense.

So sure, vote, learn, read, educate yourself. But realize that the ACA is here and making it go away now isn’t the answer. Let’s fix it. Let’s get behind it and try to make it something that gives every man, woman and child in America the same sense of relief and safety and freedom from fear that I now have, that many of you have. Let’s give everyone the gift of the right to life, liberty and the pursuit of happiness, something one cannot have when they are unable to pay for needed medical care.

I don’t think this will be America’s undoing. I think, if we all come together and quit being greedy and whining about what is being taken away from us and instead of focus on how we can make this country great for all of our citizens, focus on what that can give us as a whole, we’d see that the ACA is a framework, the structure and foundation is a little shaky, but we can stabilize it and work on it and we can build a strong, functioning beautiful thing here–for all Americans.

I am not republican. I am not democrat. I admit to leaning liberal, but I have some very conservative ideas about some things too. I consider myself a libertarian (socially liberal/fiscally conservative, believing in small government and freedom as foundations)… but  mostly, I’m apolitical. My actual thoughts on ACA are, It’s here now, nothing we can do about it, so let’s make the absolute best of it that we can. Now that I’ve seen how dramatically having health insurance has personally affected my life, I feel I have to put my support behind helping others find that same sense of security in their lives.

This is bigger than me. This is bigger than you. When we look at the big picture, maybe we can focus on something that will make this country great again.

Or maybe not.

But at least now, with my having health insurance, I just might live long enough and have enough quality of life, to get to watch everyone bitch and moan about it for years to come–I hope, I hope.

I love you all… regardless of your political affiliations and beliefs. I love each and every one of you for the glorious, wonderful human beings that you are.

Love and stuff,

Michy