I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Saturday, April 14, 2018

Let's talk about Internal Medicine...

Hoooo boy. OK. Let me start by saying I've taken in 135 calories over a period of 2.5 days. A few minutes ago, I ate two crackers and gagged the entire time trying to chew and swallow them. I've managed one yogurt smoothie, but not the protein drinks. So things are going pretty badly this week, to say the least.

Dr. Broughton is aware of everything that's gone down over the last year with my Gastroparesis, including the fact that my former Gastroenterologist got annoyed over my high risk situation and gave me the boot (something I haven't even bothered to talk about here, and probably won't mention it again). He wasn't particularly nice, and I didn't let the door hit me on the way out. So that's that. I have no Gastro doc. Thankfully, Dr. B knows enough to deal with this himself, and he is trying his absolute best to help me. He is so great. He always tells me it's good to see me even if I'm cranky. He says I'm his best patient, and I laugh because we all know that's not true (I've been downright difficult at times). I can talk to him about anything, and I do, and he sympathizes. If he doesn't know the answer to something, he goes into the next room and looks it up while I wait. If I need a new drug regimen, he pulls up the info, prints it out, and we both read it to determine if it is ideal and safe for me to take. He trusts my word and my judgment completely, and we figure things out together. We're a team. This is how doctoring is done.

He runs a low-income/charity clinic, this being one of the most impoverished towns on the entire Gulf Coast, and he's one of my favorite humans. He has been a good friend to me, like a dad, for several years now, only he's impossible to access without an appointment due to patient volume. That's the unnerving part, but I understand.

We've tripled my chloride channel activator. If that doesn't work, I'll be upgraded to a guanylate cyclase-C agonist. I'll start with the smallest dose, and if that doesn't work, I'll try the next dose up, and so forth. He gave me four prescriptions in which to do this, and told me to let him know which one I end up going with so he can prescribe it long-term. It is assumed that since I don't have diabetes, my digestive paralysis is the result of muscular dystrophy. So, if one of these things works, it'll probably have to become part of my lifelong regimen.

I am so tired of pills, but so be it. I just hope something works. If this situation doesn't resolve, or at least improve considerably, he wants me to consider a gastric pacemaker. Unfortunately, surgery is extremely risky. People have died under anesthesia with primary periodic paralysis, and I never fail to have complications from anesthesia every time I have a procedure. These complications include not waking up for an extended period of time even when shaken, pinched, yelled at, etc., severe vomiting and dehydration, paralysis for days with residual weakness for weeks or months, and waking up too soon on the table screaming. Needless to say, I would prefer not to relive any of this. The highest risk, of course, is death by pulmonary failure or malignant hyperthermia. Let's avoid that too, shall we?

I told him about my doctor in Jackson, and he was really happy to hear that Periodic Paralysis is getting more attention. Dr. B doesn't treat Periodic Paralysis himself, but he does know what it is and he provides all of the scripts I'm on through his medication program. This quite literally saves my life. I don't know what in the world I would do without him, and I frequently worry about what will happen to me when he retires.

I'll follow-up in June unless something happens to bring me in sooner. Until then, all I can do is take on this new treatment plan, stay hydrated, and eat if at all possible. Wish me luck.