Care Overkill and Super Meltdown

Yesterday, on my mother's birthday no less, I blew a gasget. I'd reached my Medical Bullshit Threshold. Let me back pedal.

So, I was hospitalized in April. Thought it was a GI issue, so I went to Santa Monica UCLA where Dr. GI is located. Turned out to be a ruptured cyst with internal bleeding due to blood thinners, so I was transfered to Westwood UCLA. Spent a total of 5 days there.

Had a bit of excess grossness with my GI area, so I went back to my GI. He prescribed some medicine which I am still on, recommended a buddy of his we'll call Dr. 2nd Opinion. I really had no interest in switching doctors, but I thought it was pretty nifty Dr. GI could be humble enough to say, 'This guy is AWESOME-SAUCE in the area you're having issues with, go see him. He's better than me.' So I switched out my follow-up with him to an appointment with Dr. 2nd Opinion, which was this Tuesday.

First. Sigh.
OK, as well-meaning as residents are, 99% of them are dumb as bricks when it comes to doctor-patient relations. Like, they never take the five seconds it would cost them to apply a brain-to-mouth filter on the words flying out of their mouths and how said words might affect the patient. They're so fucking eager to come off as REAL doctors that they think they're being impressive by shooting off their mouths before they have the facts.

Here's my case in point:
Eager Resident to Dr. 2nd Opinion is a nice girl - oh, they're all nice 'cause if they're assholes, I can at least tell them off - but she started asking me about liver transplants and used scary words like cirrhosis and congestive failure. 

I told her my liver does NOT have cirrhosis, despite what others assume, because I had a biopsy not one year ago that showed no signs of massive scarring or cirrhosis. She left to confer with Dr. 2nd Opinion and brought back my notes from the biopsy I referenced. Guess what? Cirrhosis-free. So then she told me - get this - that techs will see fluid in tests and just assume it's cirrhosis and write that down in their notes. Which is why I have a mega shit ton of references to cirrhosis in my notes.
Assume.
They assume.
ASSUME?
What. a fucking. liberty.

My brain nearly oozed out of my ears and onto the floor with that revelation, but oops, it was finally time for my actual appointment with the actual doctor - an hour behind, thank you very much. So he comes in - along with this Mystery Hottie Whitecoat who doesn't bother to introduce himself, just hangs back. So I am getting examined by the Dr., Eager Resident and then Mystery Hottie Whitecoat suddenly jumps in - and I stick out my hand and say, "AND YOU ARE?"

Dude. Seriously. What. The. Fuck. I'm a fucking person. Don't put your goddamn hands on me without my consent.

The only person on this planet who gets to touch me without proper introductions is Ben Whishaw, and since I'm about 98% certain he's as gay as the day is long, that ain't gonna happen anytime soon. 

Then Dr. 2nd Opinion springs a SURPRISE! in-clinic mini ultrasound test on me. OK. Was not prepared for that. Oh, but he wants a proper ultrasound on my liver, spleen and doppler done. The kind where I have to fast for 8 hours, make a real appointment at my medical facility of choice - oh, and don't forget the follow up appointment I need to make with him to discuss the results. 

I made these appointments, but come on. Come on. What the fuck? I've had these tests done. They've been done. They're done. Just. Accept it all, dudebro. Confer with notes (which are clearly never read). I questioned him and the necessity of this test, but he said something something lesion on liver something something just make sure. Like, what about picking up a phone and conferring with the rest of TEAM RACHAEL! to make sure the lesion isn't there? Well. Whatever. So I got some blood drawn, made the follow-up appointment and faxed the order for the ultrasound. MORE days to come out to the West side. Jooooooy.

Then. Yesterday happened. 

So, in light of the cyst debacle, I'd been taken off my blood thinner. It was comical that the idiots in the Coumadin Clinic at UCLA rang me up to harass me for getting my INR check when it happened the first time around. It was a simple explanation on my part, a grumble at improper notes by the lady who called, and a laugh we shared. Good times.

Then yesterday I get another call. From an irate bitch at the Coumadin Clinic. Telling me my INR was low. Are. You. Fucking. Kidding. Me. I explained to her what had happened - and this woman had the audacity to INTERROGATE me about the authenticity of my story.
It went something like this:

Me: I'm not on coumadin anymore. I had a cyst rupture, I was bleeding internally and I was hospitalized for like five days.

Her: When?

Me: This was last month, April. Over a month ago.

Her: Well, which physcian took you off?!

Me: To be honest, all of them, but Dr. A sanctioned it.

Her: Well, which hospital did you go to?

Me: UCLA. I started at Santa Monica, but I was there for 24 hours before being transferred to Westwood.

Her: *huffing and puffing, running out of steam* Well why didn't they put it in the notes!

Me: I was called by the clinic about three weeks ago and we had this exact conversation, so I don't know why it isn't there. It should be.

Her: *fussing and grumbling AT ME* Blah blah bitch bitch....(pause) (mumbles) Oh, there it is. Stopped coumadin April 12th.

Me: Justified.

What the HELL is with people not bothering to read the mother fucking notes? Did these people just coast through school on memory alone? It's like their professors said, "Hey, class, since I am SO awesome, I am going to give you an open book and open notes test!"
And these people just kick back, all cocky like and say, "Nope. Don't need 'em."
And FAIL.

After that I tried unsuccessfully to schedule my ultrasound on a day when I'd be down in the area anyway so I wouldn't have to waste another day there. I looked at my calendar and realized I would be down at UCLA 3 times over a 7 day period. Nope, nope, nope. I hit my threshold and lost my shit.

I got authorization to cancel one appointment (a follow up with the Lady Doctor) but I put TEAM RACHAEL! on the case of this test, asked them to dig around in notes and tell me if this shit is necessary or just some doctor feeding his own ego.


People wonder why I can't have a life. This.
This is why I can't have a life.

Sunday Confessional: The Costly Heart

Yes, Yes, I know that there are a pile of new interviews waiting to be posted and that I still need to bog about my visit to the Children's Hospital of Philadelphia, but this confessional was inspired by a piece of mail.

Every month or so I receive a Medicare Summary Notice, detailing all of the expenses my health costs them through the claims processed from one date to another (usually 2 months behind the date of receiving this letter). 

This newest summary, for claims processed early August through mid-September, is seven pages long, most of the them printed double-sided. Among the claims listed is my liver biopsy, which took place July 27th. Keep in mind that I was an outpatient.
When added up, with all of the tests, fluids and medicines, anesthesia, techs, machines, man power, and recovery room, the grand total of this one day at UCLA came to: $23,591.23 

Now, do I have $23,591.23 just lying around in old mayonnaise jars buried in my front lawn? Of course not. I have two insurances: a federal insurance and a state insurance. 
Is it perfect? Far from it.
Is it controlling? Indubitably.
Is there room to improve them? Without a doubt.
Despite its flaws, am I still grateful for these insurances and will I continue to remain medical bill debt free so long as they are in effect? You Betcha.

One day I hope to have a less demeaning, stigmatized, controlling insurance - one that permits me to earn an income that matches the cost of living; one that does not dictate how long I can explore the world; one that allows me to save my hard-earned pennies; an insurance that actually permits me to enjoy the life they help preserve. 

Liver Biopsy Results

Technically, I received this phone call last week, but being of a superstitious nature, I waited a full week to share this with everyone because the cardiologist who read my test results was not Dr. Evil, my cardiologist. Dr. Evil was out of town, so Dr. Not-My-Cardiologist was filling in. It's not as if Dr. Not-My-Cardiologist isn't a fully qualified medical professional, he's just not on my team and therefore I am uncomfortable with him making judgment calls on my health.
So I said to TEAM RACHAEL!, "Get back to me when The Man has had a look at it. I'm not telling the internet I'm all puppies and unicorns until I hear it from him. Not that I don't trust your man there, but, let's be real: I don't trust your man there like."

I'm so happy TEAM RACHAEL! understands my use of the English language.

He did and confirmed what I had already been told: No signs of cirrhosis, not even a significant amount of fibrosis (unsure if I am using the proper term here, but essentially not a lot of scarring)

My liver is functioning the best it possibly can and is as healthy as can be.

Superb news indeed.

Now pass me the sangria.

He ate the liver with some fava beans and a nice Chianti

When I checked in at UCLA Hospital via Foursquare I wrote, "They're eating my liver and drinking my blood!" I hope that made someone's day. When I was lying around in pre-op waiting for that blasted Moriarty! to show himself I jokingly said to my nurse Beatriz and mom, "He's going to eat my liver with some fava beans and a nice Chianti."
To which my mother replied, "Yuck! Chianti is too sweet! You want something dryer than that!"
Thus ruining my Silence of the Lambs joke but making me laughing my ass off nonetheless.

My procedure got pushed back by an hour and there was no television to watch or drawers to rifle through as I usually like to commit petty acts of larceny whenever I'm in for a few hours. I can always blame it on the loopy meds if I am caught.

So, I suppose I am doing that thing wherein I assume Everyone Important To Me Ever just automatically understands why I am having a liver biopsy but I've found myself having to explain over and over again. Time to just explain in blog format so I can impersonally redirect any inquiries to this post.

A long, long time ago (in a galaxy not so far, far away) I had a two-part procedure called The Norwood and The Fontan. It was in its, ah, third? revision phase at that time and my surgery was performed by the titular Dr. Norwood himself. In other words, I had the best surgery at the time, performed by the best guy who could have done the job.
One of the drawbacks to the Fontan, however, is that my pulmonary veins put pressure on my liver. My liver is slightly enlarged and extra sensitive because of this. TEAM RACHAEL! likes to keep an eye on my liver in addition to my heart because of the relation by surgery. We keep a lookout for erosion and cirrhosis. So far, external and on-invasive methods have come back with very reassuring results. However, the only way to truly know what's going on with a liver is to conduct a biopsy. Hence, yesterday's procedure.

I won't know my results for a little while yet but my cardiologist, ever two steps ahead of the game, sneaked in to take pulmonary function measures. My NP's swung by to visit when I was waking up and told me my function is "11" which I am told is the best it can possibly be. Good news to hear indeed!

I would be feeling a lot better right now if it weren't for my eyes, of all things. I was asked to forgo general anesthesia in favor of heavy sedation; meaning I'd be asleep-ish and so out of it that I'd have no knowledge of what was going on and would not feel or remember anything. In spite of its date-rapey overtones, I agreed so long as I'd not feel a damn thing including the numbing agents. The anesthesiologist was very professional, friendly and confident. True to form, I do not recall anything. However, when I came to, my eyes were in excruciating pain. Most likely this is because my eyes were open and sucking in all of that dry, artificial sterile air. Joy. So they're extra sensitive at the moment and I am carrying around eye drops to help along the re-hydration process.
Otherwise I have two incision sights:
1) Where the tube for the paracentesis went in on my right side, which is only tender if I attempt to sleep/lie on it.
 2) My neck, where they went in through a vein to fetch a piece of my liver. It really does look like a botched vampire attack. I secretly tell myself it was Louis Pointe du Lac; he grabbed me, tried to take a bite, realized he was fucking up and ran away in guilt and shame.

Thanks for your well wishes. I am looking forward to getting back to my regularly schedule of mindless cat videos and deadline avoidance.