The ACA, Obamacare, And My Thoughts


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. (more…)

Nasal Scope and Numb Mouth


ENTs are ear, nose and throat docs, but surprisingly, ENT does NOT stand for Ear Nose Throat–ha! Useless trivia there.
BTW, that is so NOT my nose. I totally would have shaved (ha ha!)

I went to see an ENT for the first time in my life. Back in 2009, I had a CT scan of my head to check for pituitary problems, since I seemed to have hypopituitarism, and incidentally, they found that I had evidence if chronic severe sinusitis. We sort of laughed at the time because of all the things I was dealing with, sinusitis was so minor. We dealt with a bunch of other symptoms

, acute problems, and now, I’m mostly stable. There comes that point, even with a terminal illness, where you’ve stopped putting out fires and you’re in a holding pattern. That’s the time you can start dealing with the minor nuisances, that surprisingly, taking care of them increases your quality of life.

That’s one thing I said to my doctor the other day when I went into my endocrinology appointment: Now it’s time to think about making me FEEL better. Everyone has been doing whatever was necessary to keep me alive, well, I’m alive, and now I want to LIVE. It’s time to make me FEEL better.

So now that I have insurance, it’s amazing the difference it makes. First, we go to check in and I don’t have to pay anything. I also don’t have to sign three forms that basically ask or me firstborn child (they can have her–she sucks at washes dishes!) and for me to sign my life away in a promise to pay them for whatever treatment goes over and above the amount I have pre-paid. I usually pre-pay $90. This time, they asked for nothing. I went to three more appointments and they asked for nothing then too. I was expecting a co-pay of some sort. Nope. Okay, I’m good with this–nothing upfront–but I’m terrified of the bill I’m going to get!  (more…)

I’m Insured!


medicare_card_largerAs of midnight, November 1, I am finally insured! Yay! It’s been a long road waiting for this to happen. My doctors have wanted me to have another sleep study, which costs $1850. My pulmonologist wants me to have another V/Q exam, which is a nuclear exam, and was quoted at $3200. I also need a right-heart catheritazation, and we have no idea what that will cost. I need another echocardiogram, and I need a full spine MRI. I need a chest CT angiogram. I need a sonogram of my liver. I’ve been putting all these things off for a year to two years now, because I can’t afford them. My doctors have been wonderful with me, making sure I only have to take the tests and studies that were absolutely critical to my care, and letting me put some of these off until I was covered. They’ve felt their hands were tied, and it’s hard to treat a patient when you can’t send them in for the tests they need.

My doc wants to monitor my congestive heart failure, by doing a BNP test, but that test costs $220 bucks a pop. He wants to do one about once weekly. Then I need my PT/INR checked weekly, which is $90 bucks for the test and the visit. That’s over $300 bucks every month, just for two little tests. That’s not including the cost of the doctor or any other tests. (more…)

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