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 of 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! 

Back to the ENT. Went in and told him the pulmonologist was afraid I had polyps in my nasal cavity. The ENT says I don’t. The Flonase nose spray has been working wonders with keeping the inflammation done and makes my head feel a lot less disjointed and stuffy. The pain is a little less too, so I’m hoping over time that will continue to improve. I’m taking Zyrtec in the mornings and Benadryl at night, Flonase twice per day, and it’s helping. The sinus headaches have mostly stopped, that weird drainage and popping along my neck and back of my head is mostly gone, and the inflammation and pain is improving.

So they said, “Okay, now we’re going to use the scope and see what’s going on up in there.”

Wha–?

Scope, wha…?

When he said they had to numb it, well… that means this could potentially hurt. I was quite nervous. But I have to be honest, except for the numbing stuff they sprayed into my nose tasting awful and making my tongue and the roof of my mouth numb too, it didn’t hurt even a little bit. The doctor said it would have been quite painful without the numbing stuff, but that the stuff works really well. I got to watch the scope on the television screen while they looked inside my nose and nasal passages. That was really, really cool.

I mean, really cool. Surprisingly, it’s very clean up in there. I know we often think of noses as being all gross and dirty. And I admit when the camera went up inside where the nasal hairs are at the entry of the nose, it looked a little gross, but beyond that very front where those little hairs are, everything is pinkish and smooth and sort of glistening and clean, like super clean. It’s really surprising.

Anyway, I got to see the perforated septum first hand through the camera. It’s scabbed and it has a little blood on it, but I already knew that. They said they could put a button in, but they they are usually uncomfortable so as long as it’s not really hurting and it’s not bleeding uncontrollably, there’s no real reason to do it. I’m all for leaving things well enough alone if there’s no reason to do it. So for now, the perforated septum will just be left alone.

The good news is, no polyps. A little inflammation still, but that will eventually, maybe go down. Things are a little ‘crooked’ in there, but nothing they were too worried about.

All in all,, it was an interesting experience, and the doctor was really cool about the whole thing and he made me laugh through it, and I liked that. Set me at ease. I wish he did more than just this specialty. I’d love to see more docs like this one. I often find with the ‘uncommon’ specialties, you find more of these kinds of docs. I wish I could find an endo like him.

Anyway, all said and done, I come home, log into my chart online and see the bill for this procedure: $986 bucks. Wow. Thank the universe I have this insurance now, ’cause I would have never done this test if I didn’t have it, and I would have never known what was going on and what the proper treatment was for me.

Here’s where the talk has to go with healthcare: Was this test medically necessary? Honestly, no, it wasn’t. If I’d had polyps, if I’d had nasal cancer or something like that, or they even suspected it, maybe the test would have been necessary. If I had not had insurance, I would have refused this test. That would have resulted in diminished quality of care which would have resulted in a diminished quality of life.

So it comes down to, quality life is directly related to what you can afford when it comes to medical care. Sometimes you’re lucky and you get a good doctor who is willing to work with you and find alternatives to the expensive tests. Sometimes you don’t. And sometimes, there are no alternatives.

And because of this, sometimes people die, needlessly.

More on that in another post. In the meantime, it felt good to get one of my long-awaited appointments and tests out of the way. I have a sleep study scheduled for February. I have a V/Q scan scheduled for the end of December. I have some other test scheduled in January. It’ll be a busy couple of months and I have to meet a new primary care doc (mine graduated and so I get to start all over again next month with someone new).

But at least I’ll start moving in a direction and maybe we can get some more answers… and maybe, just maybe, get me well. I know the support group I participated in told me to ‘get used to living with a terminal illness’ (wasn’t that supportive of them?) but I’m NOT convinced that ‘terminal’ means I have to die any time really soon. I’m going fighting and kicking and screaming the whole way–with maybe just a little bit of whining thrown in now and then.

Love and stuff,

Michy