Looks like I missed some comments? Weird. I will respond here.
COMMENT ONE:"I am SO sorry. How awful. Are you having an ERCP? Dreaded
question....will steroids be part of the procedure or are you trying
without? Was it a scope before that gave you a crisis after? I'm
probably recalling incorrectly. Thinking of you lots. Hang in there."
I think it's an ERCP and an EUS or whatever. It's a down the hatch procedure, no actual incision, but, of course, me being me, I need general anesthesia. The GI I was combative with under Twilight must have left really explicit notes about 'do NOT use Twilight unless you like patient kung fu'. My current GI doc (same practice) was very clear that I would not have Twilight anesthesia, no way, no how. I have been banned.
I will stress dose. Yes it was a scope with general anesthesia that gave me problems before. I am doing SO much better on the adrenal front,but I don't want to play fast and loose. The downside of a steroid dose before surgery has a duration of maybe 6 hours compared to 3 months with an adrenal crisis. It's no contest.
Plus I could probably use the anti-inflammatory boost. I am not doing very well right now and I worry about having pancreatitis from the procedure itself. If I'm even well enough to have it at all. Things are really touchy right now.
COMMENT TWO: "I'm confused by a gap in the narrative. In our practice area, the ER
would advise a follow up w/ primary care physician and/or a specialist
in the area of concern. The specialist would never be available in the
near future, so almost all get an appointment with us (The Family
Physician) the same day they call. We translate and treat and make a
plan for continuing care, including consultations w/surgeons or others
who might relate to an unresolved abdominal pain/problem. It sounds
like there is a hole in your system. (p.s. I reviewed this post on my
BTR show last night- Dr Synonymous)"
ER advised follow up with a GI doc and I am an established patient with that specialty, so the runaround I got was really strange. I think the problem was the first receptionist I spoke to was a moron. Primary did things for me when I called them. They tried to help me circumvent stupidity from GI's administration, but they didn't want to see me, they wanted me with the GI, which I think was appropriate.
Sadly, I missed an appointment because of GI's logistic stupidity. I could have seen a gastro within three days of the ER visit instead of eight if they'd had their act together. My GI told me they are trying to get an appointment for their neighbor there and they can't get them in. It's bad.
Looking at my experience with the other hospital system, it just seems like the business side of the equation is controlling work flow in strange ways, rebuffing patients to everyone's detriment. I think too, the new push to force people to see primary--not call, but actually see--is an attempt to drive up profit as well as control scarce resources. Why earn money off one appointment when you can bill for two? It doesn't matter anymore if your insurance doesn't require a referral, now the hospitals do.
Poor communication and significant administrative barriers to care are the new norm in medicine in my experience. To the point where I wonder what is the merit of a specialist if they can only see you at 4 to 6 month intervals and never when you are acutely ill. The ER ends up compensating for these scheduling issues resulting in zero continuity of care in my opinion. The doctors who know me never see me when it counts.
Essentially my pulmonologist gives me inhaler prescriptions and never provides care for acute episodes. Sure, they'll see me for the aftermath, but can't be present for the jump off the cliff, which is when I really need their expertise.
Honestly, what do I need a pulmo for? They're never around to intervene so I can stay out of the ER and hospital. Why can't I just go through primary for the prescriptions? Why establish with a specialist when they are never available when it really matters?
Yeah, I get to see them every month after a bad episode but that doesn't help me. It doesn't materially benefit my health at all. In fact, it's bad for me. I have to walk at a time when my lungs are raw. There are smokers everywhere, which is significant trigger for me. I've actually had pulmo appointments cause asthma attacks because of these factors. Then they argue with me about the HPA axis suppression and refuse to treat it. There's no added value.
It's messed up. Which is why, when the asthma is stable, I will only go to see the pulmo twice a year instead of their preferred 4 visits a year. It's a waste of time, mine and theirs. I do just enough to keep myself an active patient and that's it.
And if any of this makes no sense, well, I'm really not doing well. As of this morning, I think (hope and pray) I'll stay out of the hospital. Last night I wasn't so sure. I've had increasing pain and started alternating Advil and Tylenol to try and get ahead of it. I'm also on an all liquid diet as well as sleeping sitting up. I hope that's enough.
The other fun thing is my kiddo looks to have impetigo. It's going around at her school. So I kept her home and took her to the doctor on Thursday. Except, stupid me, I put Neosporin on the blister cluster and it resolved over night so she looked fantastic at the ped's office. As a result, nothing much came out of the visit and I continue to use the Neosporin on the blisters in the hopes that it'll resolve without another doctor's appointment.
The ped caught me picking at the tape residue from all the labwork I did this week at the GI's office--there's always adhesive gunk that just won't come off. She asked me about it and, again, stupid me, I told them I had pancreatitis. This triggered a series of awkward questions to determine 'is this mommy a drunk and should I call CPS?' That was fun. I didn't realize the dynamic at play either until much later, so, in the moment, I was quite naive and didn't do much of anything to reassure the ped.
Then I started to wonder, does everyone just assume I'm a lush when they find out about the pancreatitis? Yikes!
For the record, I don't drink. I have literally never been drunk. Ever. I can produce witnesses if necessary.
The two sips of beer I've had in my life have made me want to instantly puke. In fact, in college, I took my first sip and then dry heaved while begging for Sprite. (You have never seen drunk 18-year-olds move so fast to a) get out of the way b)get me a Sprite so I didn't vomit.)
I hate the taste and my stomach doesn't want the stuff. The second sip was a total accident, I thought it was my pop can, but no, it was Bud Light or some other equally horrid swill.
My husband stopped drinking a while back and so, for the last several years, we haven't even had alcohol in the house. My palate is changing with age and I could see enjoying wine at some point, but, given the pancreatitis and a few raging alcoholics in my family providing up close and real life examples of why alcohol is bad, I think I'll just stay dry.
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