|Apr 14 2012|
I saw the gastro doc this last week. :sigh: Asked me if I had any questions, I had a few for now, he ordered some labs we clearly need to type the HCV... Clearlyhe's dealt with some weird stigma that HCV has for some people it seems.
My rheumy doc told me absolutely no Methotrexate at all (he's from the universit & I can't recall the exact reason, but looked it up & he was right... with my health issues, an absolute no, so told me perhaps Plaquenil, but to get eye testing & a "portal pressure".)
Then I see the gastro doc (who I was VERY uncomfortable seeing b/c the last 2 encounters I had w/ him - he was pissed about me seeing "my nutritionist" [was another specialist's nutritionist & ironically, their offices are in the same building, right next door!] as he put it & that he'd run a test that she wanted, then, after throwing up for about 6 months, he finally ordered an upper GI, although I didn't think that's where the problem was - felt like a colon issue... felt like many of the other docs in the system around here - backwoods, semi to not competent, with a few good docs, some pretty impressive here, many of the good ones have retired, don't take my insurance & some are cash only now b/c of the politics & expense that's created.)
Anyhow, he tells me he has “no problem with my being on Methotrexate", even though I have HCV & a laundry list of other things going on... I'm not sure which was the absolute he** no w/ Methotrexate (MTX) with the rheumatologist, but recall reading it when I got home & the rheumy doc was right, then wanted me screened for Plaquenil, so I set up the eye appointment & he set up the gastro doc b/c I'd been to this guy before... And the gastro doc is OK w/ the MTX, even though it's contraindicated & clearly flat out dangerous, perhaps even deadly. (Not HIS body, so I have to wonder if he were in my shoes if he'd take that risk of MTX w/ my health issues?)
Then he says that a "Portal Pressure" is done like angiography (He apparently doesn't do these, doesn't have the training, and *implies* that it needs to be done by a cardiologist, but never said so), THEN tells me I "must have read about that on the Internet" - YES! I did because the rheumatologist wanted me to have it done before possibly putting me on Plaquenil... He said I must have come up with this on my own, but clearly he doesn't have the training to do this test & blew off what the rhemy doctor had told me, said he had his notes there, so as I was about to tell him to call him, he said he would... I had already had a bad feeling about going back to this guy again... THEN he asked IF I'd had an endoscopy or colonoscopy before??? I told him yes, then he asked me where? I had to tell him that he'd done the last 3!!! (I'm thinking at this point, “OMG, you've GOT to be kidding!")
He goes on to asking me if I lived by myself, if I have family local (I do), and then if those family members can check on me like every fricking day? (Not really - my son & his wife are getting to start a family, he just started a new job, and he's busy, she works & is often on-call.) He tells me to go buy a book, get the labs drawn (insisting I get them done at a hospital where they've consistently screwed up my tests before & most had to be redone elsewhere) & something about my memory will get worse with treatment, that I'll get “profoundly depressed” with treatment, but we'll start treatments ASAP! What about seeing IF I REALLY need this first? Options? :sigh: I guess I have to buy & read this book he wants to to read.. Thankfully it's in digital format! Holding a book & turning pages is hard for me.
We haven't even typed the Hep. C yet (looking at my labs I could have cleared it already, but we won't know until we get those back & hopefully they'll do those right) He DID order an ultrasound (which I've read are pretty lame to see the density/disease state of the liver, and although invasive, biopsy/ies w/ a CT are the best way to tell where a liver is w/ HCV.)
AND when I asked about a biopsy, he said... "we'll see" then proceeded to tell me we need to get started on treatment ASAP, never asking if, or under what circumstances I would want to even start treatment, if the labs revealed I didn't need them or the possibilities if I didn't have treatments at all!
One of my docs tells me he thinks INFa, Ribavin, etc. a bad idea for me.
Then the gastro doc's office assistant wrote the wrong doctor as my "primary", kept asking me who my "family doctor" was (I don't have one, which she didn't seem to understand.)The gastro doc sent me to the hospital he's joined a clinic with, no explanations for the Lactulose Rx I'd asked for & he'd agreed was a “good idea” to (I had to go back to the office b/c I didn't get the prescription, or any explanation – The gal at the front office had to check w/ the doc & it had been sent electronically), an office gal put the lab orders on my jacket, then this gal said she'd given the form to me... & they fell behind a chair... No explanation as to where to go at the hospital to get the labs or the ultrasound... I'd never been there for blood draw, except in the ER. I had to have this other gal go get her to find the lab slip & I'd told the doctor I wanted my imaging done where almost ALL my other imaging done, and a lab that ALL my doctors can get access to them (my labs) without having to sit there for another 30 minutes while they put my university docs in their system (AGAIN!) & the doctors maybe getting the results.
I figured at least the labs were ordered and done. I have decided I need to see someone else, regret waiting to see this gastro doc for 3 weeks. I'm considering moving closer to the university to get better treatment, have been for a few years & when mentioned to my in-home care worker, she went off on me about, "Having to be in control" to which I replied, “You bet I do! It's my body! (Her “care” hasn't been exactly great either & the mention of my moving has her trying to get me to do nothing at all & her trying to get me to being completely dependent on her. I need to do what I can, go to PT, etc. & she rarely gets me there at all since I mentioned possibly moving.)
Anyhow, the Dr. told me to go buy a book & to get a copy for my adult family members who I rarely see, to get the 2nd edition... (That book is on it's 5th version & the old version doesn't have the new treatments in it, nor is the 2nd ed. Readily available. I have to wonder what's in that version? What's in there that he just couldn't tell me?)
This gastro doc & my rheumatologist from the university are at odds re: the Methotrexate (MTX), which can cause death with my health issues. I don't want to, nor do I need, the stress of being in the middle of a pissing contest between doctors that don't agree & one who I've lost confidence in over time... BTW, if I've had HCV so darn long, why didn't this gastro doc catch it before now with all the times I've seen him? When I was throwing up for so long? This isn't the 1st time that one of the local, “hospital-system” doctors has been at odds w/ a university doc. There is definitely some bad blood between the 2 systems... The university docs are FAR more professional & far more up to date than the ones that seem to want to argue with them!
The local hospital has screwed up a LOT of tests that have had to be re-done.
I don't like where I'm at for healthcare at all, thus considering moving closer to the university, which will end my in home care worker's job (although we have issues w/ her slacking off & not showing up), so she doesn't want me to go anywhere & I have to wonder how far she'd go to keep her job? We got in an argument about the doctor's BS & that just making it more clear to me that I'm feeling safer either going to the university for this care, which would be difficult b/c the distance, or just moving there. She made some snide remark saying, "You really have to to be in control, don't you?". I told her, “You bet your a**! It's my body” & she knows about the incompetent care I've received from some local docs in “the system” for some time, having to have things re-done, etc.. At least there are plenty of ppl closer to the university that I could hire. I don't appreciate disrespect or verbal abusive, referring to some things that happened before w/ this doctor, yet hoped she'd get it that she too was WAY out of line. I clearly need to have a talk with her & clearly don't need this at all right now!
Living in a remote area, the choices are very limited, the care is touch & go (sometimes great, other times horribly incompetent.) I know what happened at the gastro doc's office wouldn't have happened with the university-affiliated doctors. The standard of care is FAR higher at the university, and they work together.
Another local doc of mine (not in “the system” i.e. - Corporate Hospital-affiliated) tells me I shouldn't let them do any treatment at all!
Anyhow, I have a lot on my plate & at this point feel like just telling them all to take a hike, keep my pain in control, pack my bags & take a vacation!
My in-home worker/driver has kept me from going to PT & doesn't want me doing anything but staying in bed, which isn't helping me get well at all. She has her own health issues and that's become a problem getting my needs taken care of, almost right after I hired her, similar to the gal before her.
Sucky timing, but I think it may be time to move closer to the university. I know I'd be going from a 2-bedroom house in a rural area w/ a yard I really can't take care of any more to a likely 1-bedroom apartment in the city, but something's gotta give here. I'm not sure staying in this rural area w/ the often crappy healthcare, dental care (or lack of it), the neighborhood going to crap, the yard work I haven't been able to keep up with, etc. is in my best interests.
It's been a crappy experience since these EMR/EHR systems have come online & I've had issues with this doctor the last two times I saw him, figured I'd give him one more try, as everyone has their bad days. I'm feeling like that was a mistake now. It's clear we don't work or communicate well together. The in-home care gal is new & is a problem – gets me to my appointments (usually late, which is a pet peeve of mine), yet not to work-outs that need to be 2-3x/week (I'm lucky if I get there that many times in a month!), house work doesn't get done & I get a lot of excuses that she's on some new medication & isn't feeling well & that she thinks being on-time is “over-rated”, she takes the long way driving to do everything, stops to do her shopping when she's supposed to be working for me, etc. If there were someone to replace her, she'd be gone in the heartbeat. If I was on treatment, I'd be even more concerned about dishes being done properly, general cleanliness, etc. with this gal. My standards are FAR higher & it's clear that my health would be compromised. She's made comments that she wants me to live with her family, something I don't want at all, and have told her so. Our values are FAR different. I'm not the couch potato type. I need to get out & get some fresh air. That hasn't happened since she's been working for me at all.
Thanks for the hugs guys
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