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arguchiki think i have decided to seek at least one further opinion about my appendiceal tumor. i've been doing research on the pmp awareness site, and have also been in communication with 3 different people in the support group that originated the site. [it's a yahoo group called "pmpbellybuttons," because apparently many doctors who do the MOAS (mother of all surgeries) end up removing the belly button along with whatever else. btw, i find the word "belly" very upsetting lately...i don't like that one of the colloquial names for this illness is "jelly belly," and i don't like this whole belly button issue one bit. please leave my belly alone! and no, it would not be funny to give me a package of jelly bellies as a gift. maybe in a couple of years. but not right now.]
anyway, i'm beginning to have some concerns about the surgical oncologist i have been seeing at UWMC. he's not an expert in dealing with PMP, and it turns out that he's actually had some pretty bad outcomes among the patients he has treated. nobody likes him, either. my concern is that it's very easy for a non-expert to miss the subtle signs of developing PMP illness on a CT scan. thus, i am starting to doubt whether or not i can trust the "all clear" he gave me based on my most recent scan, in february. detecting this illness early, before it has filled the abdomen with mucin and started interfering with intestinal function, is crucial. i think i should see an expert, even if it's just for peace of mind or confirmation that i'm following the most prudent course of treatment/monitoring.
let the insurance dance begin... my insurance is a PPO, and of course there are no experts in my provider network (it is basically limited to practitioners who are part of the UW medical system--yeah, not a great PPO). this condition is extremely rare, and "orphan" illness, so there aren't very many practitioners who even know about it, much less specialize in it. the nearest doc who's even close to being an expert is dr. holbrook in spokane. after that, it's dr. loggie in omaha nebraska, or dr. sugarbaker (the world-class PMP hotshot) in the d.c. area. none of these guys are in my network, obviously, which means the cost of seeing one of them is covered at only 60%. i also just realized that the maximum benefit for my plan is $100,000 per year, which would not cover the cost of surgery, should i need it.
i really need to get the fuck out of school and get a real job that offers health insurance for grown-ups.
anyway, i'm beginning to have some concerns about the surgical oncologist i have been seeing at UWMC. he's not an expert in dealing with PMP, and it turns out that he's actually had some pretty bad outcomes among the patients he has treated. nobody likes him, either. my concern is that it's very easy for a non-expert to miss the subtle signs of developing PMP illness on a CT scan. thus, i am starting to doubt whether or not i can trust the "all clear" he gave me based on my most recent scan, in february. detecting this illness early, before it has filled the abdomen with mucin and started interfering with intestinal function, is crucial. i think i should see an expert, even if it's just for peace of mind or confirmation that i'm following the most prudent course of treatment/monitoring.
let the insurance dance begin... my insurance is a PPO, and of course there are no experts in my provider network (it is basically limited to practitioners who are part of the UW medical system--yeah, not a great PPO). this condition is extremely rare, and "orphan" illness, so there aren't very many practitioners who even know about it, much less specialize in it. the nearest doc who's even close to being an expert is dr. holbrook in spokane. after that, it's dr. loggie in omaha nebraska, or dr. sugarbaker (the world-class PMP hotshot) in the d.c. area. none of these guys are in my network, obviously, which means the cost of seeing one of them is covered at only 60%. i also just realized that the maximum benefit for my plan is $100,000 per year, which would not cover the cost of surgery, should i need it.
i really need to get the fuck out of school and get a real job that offers health insurance for grown-ups.
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Date: 2007-05-20 07:54 am (UTC)no subject
Date: 2007-05-21 11:31 pm (UTC)It's comforting to know that there are insurance warriors out there who help fight the good fight. A few years ago I had surgery on my gut for diabetes which was considered experimental by most insurance companies, so my surgeon and GP had to fight and fight to get it approved. It was battled for over a year, but I didn't wind up having to pay much out of pocket. I was living in Delaware at the time, and my doctor (and surgery) were in NY... so I feel ya with the out of state thing, too.
The best news is that you are in great shape and otherwise very healthy (from what I know, anyway), so you are poised to kick this thing's ass.
If you wanna chat, call anytime.