Hopefully, some of you will be saying "hey, I know that screen name..." I like to think I've made some impression over the years. ;-)
Short version: A decade-old lingering health condition reared up and hit me on the head. Without getting into squishy details, I've essentially been slowly starving to death for about five years or so and not knowing it. When my blood protein got low enough, things got [u]really[/u] bad. Among other things, my eyes started going.
After six weeks in hospital, during which many tests were run, I nearly died twice, and they eventually figured out what was up and started rebuilding me, I've now been home and continuing to treat myself. I am stable but at a pretty low level still.
I'm "eating" mostly intravenously, and am over 140 lbs. (~63kg) for the first time in over five years (I should be around 175 lbs. [~80kg]). I've got an impressive gaggle of doctors and specialists working on or following my case, and sometime this spring I'm probably going to have surgery to fix my plumbing.
So now I'm back home, living with my parents for the next year or so while I rehabilitate (can't work, or indeed do much at all). And my eyes are finally almost back to normal, and the first thing I started doing as soon as I was able was get my happy little ass back online. I'm just about caught up now.
--Jonah
Posted by Aban Rune (Member # 226) on :
"...started rebuilding me..." -- I *have* to make a 6 Million Dollar Man joke...
Glad you're going to be ok, though. I'm sure that had to be hella scary having something that had been around so long suddenly jump on you.
Posted by The Mighty Monkey of Mim (Member # 646) on :
Boy, isn't this just the month for sad news. Although, I guess this is actually more happy news, considering that it sounds like you're getting better.
Best wishes, -MMoM Posted by tricky (Member # 1402) on :
Definatly glad you're getting better. Judging by our knack of near death illness, hurricane and terrorist action, perhaps we should do a regular roll call....
Posted by Jason Abbadon (Member # 882) on :
jeeez. I thought I was the worst case Flarite for horrific health disease/conditions, but I've been trumped at least twice now.
At least I have narcotics to knock my condition back a bit and allow me to live (relatively) normally (though I'll never wear shorts again in public), but the whole "almost pushing up daisys" bit is waaaay scary.
Who killed the albatross at Flare?
Posted by Lee (Member # 393) on :
My actions were completely justified, that bird was a total noob.
Posted by AndrewR (Member # 44) on :
Jonah/Peregrinus! Welcome back! Hope you are indeed feeling better! Do you know what the name of your condition is here for the scientifically curious and the downright nosey?
Jason - you'll never wear shorts again? You been spending too much time on your knees!?! Posted by Jay the Obscure (Member # 19) on :
Let me add what I know from my own experience here.
Hang in there, we're behind you and there to support you, doesn't sound like much when you're writing them from the perspective of you yourself not having a medical problem.
Well, speaking from this side of having a medical problem, it helps. Quite a bit.
So, let me add my voice to those who have already posted. I do hope that you continue on the road to wellness and that you do feel better.
[ January 27, 2006, 11:34 AM: Message edited by: Jay the Obscure ]
Posted by Peregrinus (Member # 504) on :
quote:Originally posted by AndrewR: Jonah/Peregrinus! Welcome back! Hope you are indeed feeling better! Do you know what the name of your condition is here for the scientifically curious and the downright nosey?
This is the part of the thread we like to call "he had to ask..." *chuckle*
Crohn's Disease. In my case, a fistula formed (one of the effects of Crohn's) between my duodenum and transverse colon, effectively short-circuiting my digestive process. Some two-thirds of what I consume has been shunting straight into my large intestine without getting broken down and absorbed.
My blood protein (albumin) was the key factor in a lot of inter-related h�mic nightmares. A healthy range is between 2.4 and 5.4 of whatever units it's measured in. At around 1.3, your cells stop being able to keep fluid in, and water starts leaking into your tissues (this is called edema). When your blood vessels stop being able to hold everything in, water and cellular waste starts doing the same, and you stop peeing )nothing's reaching your kidneys). When I got into the hospital, my albumin was 0.7. My doctors told me they;d never seen numbers as low as mine support life.
Additionally, my thyroid had almost shut down, my cholesterol was dangerously low, I was deficient in a lot of trace minerals, , my levels of DHEA-Sulfate (a naturally-produced androgenic steroid and precursor to testosterone) was practically nonexistent, and all my blood markers, from volume to content, were quite low.
The "nearly dying" parts. Well, the first was while I was under for an endoscopy. I went into "severe respiratory distress" and tachycardia (>200 before going off that monitor's scale). They had the crash cart standing by as I was whisked up to ICU. The second was a week or so later. THey were still trying to figure out what was up. I again experienced "severe respiratory distress". My albumin had gotten low enough that cellular cohesion was starting to break down (think Senator Kelly from the first X-Men movie). My skin was wet and my lungs were filling with water. So I was drowning on my second trip to ICU, and foam was coming out of my mouth when they hooked me up to the ventilator.
Over the next week, through infusions of whole blood (5), albumin (twice a day -- to hold the water where it was supposed to be), and something called LASIX (a diuretic to pull the water out of my tissues), I went from 201 lbs. (~91kg) to 115 lbs. (~52 kg). Yes, I had built up some 85 lbs. (~38.6kg) of water.
So, yeah. If I hadn't been in the hospital during those crisis points, I would probably have died at least once over.
Thank you all for the well wishes. And Jay, you ain't kidding. I'm still working my way through the thread on your [Arnie]TOO-mah[/Arnie], but it looks like you've definitely had a rough time of it, too. Here's to being too tough to die! Where's the blood-wine?! *heh*
Posted by Jason Abbadon (Member # 882) on :
Jhnah, have you tried Huneria (sp?) for your Crohn's? I used it for a time for wound care (before my Borg nanites adapted and it no longer worked on me) and it was good shit (though injecting yourself in the stomach every week takes some getting used to). I understand from my reading online on the drug (I always research side-effects of whatever I'm taking) that it's very effective at putting Crohn's into a remissive state (at least symptomwise).
That part wit the vent is scary as hell- I think I'd freak out bigtime if I had to go one one.
So, I assume you're out of immeadeate danger now, but still checking in regularaly with the old sawbones?
Posted by Balaam Xumucane (Member # 419) on :
My God, Jonas! That's terrible. I'm very sorry to hear about your condition. Having met you in person, it's hard for me to imagine you sick. I can only guess that it is your unflappable enthusiasm that allowed you to retain structural integrity (admit, you thought it too).
Writing isn't too physically intensive. Perhaps you can use this time to work on some of those script ideas. Let me know if you need a reader. I quite enjoyed the last set.
Posted by Peregrinus (Member # 504) on :
I'll check on it, Jason. But I despise needles. My IV is a semi-permanent dual-lumen central line that was installed under sedation. And thank the Force for that. I'm doing a good job of managing things through Solu-Medrol and supplements (in liquid or sublingual form).
So I am out of immediate danger, yes, but totally reliant on intravenous feeding. It's a dangerous trap to start acting as though I were well. But as of my last CT scan, the inflammation along my small intestine was pretty much gone, and the site of the fistula was a bit smaller. I'm hoping it will reverse itself entirely, as my first cousin once removed-in-law's did.
--Jonah
Posted by Jason Abbadon (Member # 882) on :
I've taken Solu-Medrol before via I.V.- kinda apain as I recall- every couple of hours they'd wake me to check sugar and BP levels.
The Humerai injection is not so bad- it's sub-cuteneous (sp?) meaning it's a "pinch and inject at an angle" kind of thing. I got over my reluctance after watching a TV show on little kids with diabetes injecting themselves everal times a day and not making a big deal out of it.
Right now, if my doctor suggested voodoo would help, I'd be willing to give it a try. I just had to drive 60 miles (round-trip) just to pick up one perscription in person, then got home and started ading up all the cash I've spent out-of-pockt this year.... probably over $5,000. And the whole pain, drugs, side effects issues...
I really should have gone with the extended warranty. Posted by Toadkiller (Member # 425) on :
Glad you're on the mend!
I hope to rejoin the ranks of Northwesterners before much longer.
Take care of yourself man....
Posted by tricky (Member # 1402) on :
My wife (who is a lightweight, with only IBS) has just metioned something called Dr ali's nutritional guide for crohn's. Might help a little.
Posted by Saltah'na (Member # 33) on :
Ouch.
Glad to see that you are back. So when was this?
Posted by Nim (Member # 205) on :
Crohn's disease. Sounds like that guy from "Hellboy". Did the doctors find sawdust in your veins and keys inserted in your spine? Did th3y say your comicphilia has gone on long enough? Did Frank Miller come to your bedside in a vision, lay a hand on your shoulder and say "That'll do, pig, that'll do..."?
Oh god just j/k:ing, and I'm glad it was something treatable and physical and not something of the mind, like anorexia or so.
Be well, John Spartan.
Posted by AndrewR (Member # 44) on :
I like the visual reguards to cellular cohesion and X-men! I mean I'm sure you didn't but - it was very visual!
I was also thinking where else have see seen that line used "losing cellular cohesion" - was it ST:TMP? The transporter accident? Sorry Peregrinus - not saying that you are like Xon. Posted by Cartman (Member # 256) on :
Welcome back to the land of the living. Again. Now we would all be very charmed if you could please refrain from trying to almost die a third time. B)
(My list of ways I officially do NOT want to go has just been expanded, I don't mind telling you.)
Posted by Peregrinus (Member # 504) on :
Glad to help, Cartman. Thanks for the well wishes, all. As most of my friends up here in the Northwest have had the temerity to not stay where I left them in '94, I'm very glad to have a community like this to be a part of.
Oh, and Saltah'na, my Crohn's initially manifested back in February of '96, was diagnosed that July, was managed with nasty drugs at first, then with diet and liefestyle. Best guess is that the fistula formed about five years ago or so. The edema started in the Spring of '04, got really bad that Winter, and was subsiding with new treatment from my new doctor in Vegas. I came up here (Seattle) for a visit last June, and returning edema forced me to stay. By August, my eyesight was going, by September, I was having trouble breathing, and I checked into the hospital the first week of October.
I've been presented as a case study at one GI conference, and I may be fodder for another community's case studies. Hell, I may end up in medical textbooks before this is over. *heh*
So that's the timeline. I'm now up to 144 lbs. for the first time in about five years. I can now run again for the first time in almost two. My blood chemistry is slowly returning to some semblance of normal, which is nice. Only down side is that i miss eating. More specifically, I miss being the billy goat I was back before all this started. I used to be able to eat or drink just about anything. *sigh*
--Jonah
Posted by Grokca (Member # 722) on :
Wow good luck on the recovery. I wondered what crohns desease was.
Posted by TSN (Member # 31) on :
I must admit confusion. From your description, the big problem was that your stomach became joined directly to your large intestine, thus bypassing most of your digestive tract. What's the reason that they couldn't just cut you open and sever that connection? Seems like that would solve the problem pretty quickly.
Posted by Peregrinus (Member # 504) on :
At the time the fistula was discovered, I weighed about 120 lbs. and my blood protein was still in the toilet. If they'd operated, it's doubtful I would have had the strength/reserves to survive the surgery, and if I did, my tissues were so compromised they wouldn't have been able to hold the sutures.
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I mean I'm sure you didn't but - it was very visual!