About few weeks ago I posted a a Blog which was basically me saying I was all fucked up crawling around my darkened room and needed medical advice.
I got some nice responses from people with some actual medical knowledge, and more than one of them told me to just fucking go into the doctor despite my lack of insurance. Thanks guys!
Well shortly after posting that blog and saying I was going to schedule an appointment the next morning, I logged off TL. Not to be seen again.
Well, I didn't exactly make it until the next day for an appointment. That night i was really fucked up, and I had my roommate drive me into the ER at about 4am. I was sweating profusely and feeling just fucking bizarre, I could barely explain my symptoms to the ER nurse and put one word in front of another.
To make a long story short, I didn't have sinusitus. I didn't have Optical Neuritis. It wasn't a migraine lol.
You've probably never ever heard of this, which makes sense because its a rare as fuck autoimmune blood disorder which is basically your immune system going nuts all over itself and eating your own cells. Its also even more rare in anyone my age, especially because I was extremely healthy beforehand. Usually it effects little kids. The nasty bit is that if you go untreated you die like 100% of the time. Luckily for me I lived within a few blocks of OHSU, which is a massive hospital complex, and the team of doctors there managed to figure out what the fuck was wrong with me after sending me home once saying it was just mono, and me coming back after 2 days of basically constant 105 degree fever. I literally had a team of about 6 doctors showing up in my hospital room every morning working on my case because it was so unusual. All I can say to them is thanks so goddamn much, and they figured it out. I had basically full body scans of every type, and a lumbar puncture, which involves sucking fluid out of your spinal cord with a big ass needle, as well as bone marrow samples, which involve removing cores of bone marrow from your hip with several big ass needles. Fun fun. They even told me I probably had cancer at one point. They were sure I had Viral Meningitis at another. I had so much blood drawn I looked like I had been a heroin addict for 20 years.
So eventually though, they got the diagnosis correct and figured out why I was so messed up. The treatment is 8 weeks of steroids, antiviral agents to kills off the mono, and chemotherapy in order to keep my immune system from ruining all my healthy cells. So here I am, living in my moms apartment and getting goddamn chemo. Chemo sucks a big fat dick, I'll tell you that, and I'm getting a light course compared to a real cancer patient, which must just be unbelievably awful.
On the plus side, as my case is really unusual, I'm also doing leagues better than the average poor little kid who gets this (the survival rate for them is really dismal). I was really really healthy before this, and I managed to avoid liver failure and all sorts of other shit in my bad stage. Right now my outlook looks extremely positive, I feel actually really good most of the time, I can go out and do stuff. My cell counts look good, and my liver is making rapid improvement. The doctors say I've got a great shot of completing my 8 weeks and this all just blowing over, which would be fucking excellent. There remains a small chance that I have a genetic variant of the condition, which would be pretty bad and necessitate a bone marrow transplant (look it up, NOT something you want to do). But the chances of that look very slim according to docs, and I'm feeling better and better. Right now my biggest issue is constipation from the shitty ass chemo, so lookin good.
Also on the cost side of things It looks like I managed to avoid getting fucked in the ass as well! Apparently despite my complete lack of insurance I managed to qualify for some sort of hospital program which has basically entirely covered my stay in the hospital. And It looks like with some clever legal bullshit I may be able to qualify for a governmental insurance program that will cover the drugs and chemo. This may involve buying a car "for transportation to medical treatment" that will reduce my saving to below the acceptable level. But then i can resell it later and I may only come out of this whole ordeal 1-2k down. i've been assured this is all above board. This is actually fucking incredible considering my overall medical bills may "officially" be approaching 500k at this point.
So thats my story! All things considered I actually feel things went astoundingly well. The whole ordeal has just been the craziest most unexpected thing I could ever have imagined. I've like never even been sick before, and then this incredibly rare blood disorder just out of the fucking blue. Anyway here I am, back on TL and fucking not dead and everything looking good! Just wild shit I hope is an inconvenient memory in a year. Just a reminder to everyone out there not to take your health for granted.
Thanks a ton for the support and entertainment TL folks! Hope that wasn't too long!
Autoimmune disorders are not to be toyed with. Glad you made it to the hospital! I hope you continue to respond well to the treatment! Keep us posted :>
On March 13 2013 10:56 sob3k wrote: This is actually fucking incredible considering my overall medical bills may "officially" be approaching 500k at this point.
Holy shit. So unlucky to get sick, but then so lucky to end up paying nearly zero. Talk about seeing both ends of the spectrum.
I've never heard of chemotherapy for anything other than cancer. 1st post nailed it haha.
Sounds like you were extremely fortunate to avoid spending the rest of your life paying off medical fees. Congrats. I also like your positive outlook from all this (but who wouldn't be positive with your prognosis and medical fees for the most part waived).
On March 13 2013 10:56 sob3k wrote: This is actually fucking incredible considering my overall medical bills may "officially" be approaching 500k at this point.
Holy shit. So unlucky to get sick, but then so lucky to end up paying nearly zero. Talk about seeing both ends of the spectrum.
Well its not quite as impressive as it sounds at first look. Its kind of the way alot of health care in the US appears to work. They throw out just absurd costs and bills, but nobody is really expected to pay that actual amount unless you get just royally fucked. Its all inflated so they can get the most amount from the government and other insurance and agencies that do pay absurd amounts sometimes.
Hoooly shit. But haha dude, so happy that you got yourself over to the hospital and that you're going to make it out (sans some body hair apparently )!! Awesome, glad you know what you're dealing with now
I'm glad your medical problems were (eventually) identified and have been treated/monitored until now. Even if your symptoms and treatments are rough, having full knowledge of the process and knowing everything is being overseen by doctors must be very reassuring.
On March 13 2013 10:56 sob3k wrote: Turns out I managed to get myself a grade A case of Hemophagocytic Lymphohistiocytosis triggered by Mono....WTFFFFFF
What? Holy fucking shit, dude... Are you aware of how RARE that condition is? Damn... What immunosuppresors are you now on? You've got to take care of yourself from now on, man...
Best of luck to you! Also, 5/5 for not dying and contributing to a story that peaked my medical interest
On March 13 2013 10:56 sob3k wrote: Turns out I managed to get myself a grade A case of Hemophagocytic Lymphohistiocytosis triggered by Mono....WTFFFFFF
What? Holy fucking shit, dude... Are you aware of how RARE that condition is? Damn... What immunosuppresors are you now on? You've got to take care of yourself from now on, man...
Best of luck to you! Also, 5/5 for not dying and contributing to a story that peaked my medical interest
Haha, yes, whole thing is just crazy. They were in contact with like the worlds expert on the condition, who has treated less than 20 cases....
right now I'm just on some antiviral/antibacterial drugs and the steroids, and my chemo is just down to Etoposide. I was also on Rituximab. But I got to stop that one, 4 hour infusion sucks dick. I believe the treatment i'm using is called the HLH-94 treatment protocol. Feeling great except my intestines dont seem to work!
lol, out of all this my lower right wisdom tooth decided to start coming in right at this very moment and also hurts like a bitch. Fuck you god.
On March 13 2013 22:08 thoraxe wrote: So how did you get Mono?
No idea, supposedly getting mono is a lot easier than the kissing they used to emphasize during the old days. I could have gotten it from my awesome ass GF, but its not too likely, as she had it like a year and a half ago. I don't need a girl blog because she is a sexy awesome badass, not too much of a story there. She flew all the way from cal to visit me in the hospital during school! Gettin shit done while immunosuppressed in a hospital room with nurses constantly monitoring your vitals and and IV does seriously cramp the sexytimes though
Man glad to hear you're very positive with this experience which is important as hell when you're ill with these kind of things. Attitude makes a huge difference. Get better dude!
Dude read his initial blog post here, he threw in almost casually:
This is clearly a gaming forum and all of this isn't actually happening, I'm just playing Trauma Team for the Wii and I like to roleplay as realistically as possible.
He wrote this shit, and almost no one noticed except for a few. I still don't know if this guy was speaking the truth but so many people expressing their concern without referring to that cast a shadow upon TL's reading comprehension skill. This is possibly the biggest ninja troll I had seen in a long time.
On March 06 2013 12:00 alQahira wrote: So uh, any update? You alive? Did you go to the doctor?
You missed this paragraph: This is clearly a gaming forum and all of this isn't actually happening, I'm just playing Trauma Team for the Wii and I like to roleplay as realistically as possible.
yeahhhh, that may or may not have been a relatively transparent attempt to get medical advice without putting medically trained people from the US at risk of lawsuit.....just sayin
Sorry, didn't read that thread. I just read the guy who is a doctors reply (on the top, he who got the poem from the guy for treating his a patient) and assumed since he saw it and was a doctor and believed it was real, that it actually was so. Guess more people got trolled than me :/
On March 06 2013 12:00 alQahira wrote: So uh, any update? You alive? Did you go to the doctor?
You missed this paragraph: This is clearly a gaming forum and all of this isn't actually happening, I'm just playing Trauma Team for the Wii and I like to roleplay as realistically as possible.
yeahhhh, that may or may not have been a relatively transparent attempt to get medical advice without putting medically trained people from the US at risk of lawsuit.....just sayin
So that's how things work over there? Any wrong advice over the internet can get you sued if you are supposed to be competent?
EPT
)!! Awesome, glad you know what you're dealing with now 
