Healthcare Advocacy

There's been a lot going on here, which means that I haven't had a chance to post lately.

Donny's health seems to be even more iffy than usual lately. I'm not sure if there's something going on underneath the surface, or if this is his new good. Two weeks ago I had to take Donny to the doctor for pneumonia. Last week I had him in for his regular monthly appointment. Tomorrow I'm taking him in for a suspected baldder or urinary tract infection. His overall health seems to be worse than normal, but there's no specific symptoms that I can report to a doctor. .

I will, however, be letting the doctor know about him passing out yesterday. We had gone for a drive, and Donny was really relaxed and seemed to be enjoying himself. All of a sudden he passed out. I had my hand on his knee and he just slumped forward across my arm. So I'm doing 60 down a backroad, trying to slow down and pull over, while using one arm to get Donny upright so that I can make sure that he's breathing. It took about 4 tries, but I finally got him pushed into an upright position. The jolt of flopping back brought him to, and he seemed okay after a minute. I have no idea what caused it, but it sure scared me.

When Donny saw his doctor last week I was talking to him about Donny's insurance and about medications, which caused me to come home and look at all his medicines again. That's when I discovered that, without telling us, the doctor cut one of his medicines in half, but wrote the prescription for a 2 month supply. Since I got the same amount, I didn't look at what the label on the bottle said. For almost a month I gave him the same dose as always. I'm frustrated that nothing was said because it caused a problem with having enough pills. Fortunately, the doctor's office is going to give us samples to get Donny through until his next refill.

Next month Donny goes on Medicare. It's good, because it should open doors for seeing specialists, but it's bad because it's going to mess with his medicines again. Since he's getting the part D prescription coverage I'm going to have to figure out what's covered under the nerw formulary so that we know what's going to need changed. It's all such a pain to keep track of, but if I don't do it then there'll be an even bigger headache when it's time to fill prescriptions again.

I get so tired of having to be an advocate. There is so much that I simply don't understand about healthcare that I feel like I'm constantly about three steps behind. I hate that feeling, but if I don't do it, then who will? It's up to me to make sure that Donny is getting the care that he needs, but I often feel like I don't have a clue about what he needs. Should I be fighting to get him in to a GI doc who can see him more than once every 6 months? Is there such a thing as a lung specialist? And if so, should I be asking for a referral? Should I be asking for a liver biopsy to be done? Does it matter? Should I be pushing to get him a prescription for a rescue inhaler that makes it so he doesn't run out long before the next one is due? Should I be getting the doctor to teach Donny better management of the rescue inhaler he has? There arte always way more questions than answers.