Monday, August 29, 2011

How to Recover from a Rare Disease in 8 Months or Less

I thought I would do a little recap of the whole saga here, as at my grandmother's wake the otehr day, all I heard was how good I looked.  Granted, I was in a funeral home, so I guess not being in the casket can be construed as "looking good."  Some of this may be a sort of repeat for some of you loyal readers.  think of it as one of those "Previously on the Matt Dursin Show..." sort of things.
As 2011 began, I was driving cross-country with my friend Brom, who was relocating to L.A. to pursue an acting career (We detailed the trip here, for you late-comers.)  Despite the fact that I ate like Andre the Giant during the trip, I think I can safely say that I began 2011 in probably the best shape of my life.  Of course, I had never in my life been in very good shape, but still... Before the trip I was averaging 300 crunches a day and lots of push-ups and bike-rides and was staying away from fast-food and even drinking less beer (I know.  Shock!  I should have seen it as a sign that I wasn't feeling myself).  I returned to Boston at the beginning of Jabuary, ready to face a new year as an awesome individual.
Sometime around Valentine's Day, I caught a bad cold, and one day coughed up some really gross, purple-y stuff.  I didn't think this was a huge deal, for whatever reason, and once the cold cleared up and the coughing stopped, no more purple-y stuff came out, so life moved on.
March rolled around, and man, was I beat.  Just dead tired.  I stumbled through the first half of the month, and when Spring Break came, I actually took three days off from work to just sleep in.  That was unprecedented, but I figured it would help.  Not a bit.
Around March 15th, I looked grey and weak and my skin was like paper.  Also, my blood sugars had been running super-high, even though i wasn't eating anything different.  I thought maybe I got a bad batch of insulin, but even switching vials didn't do anything.  So, I attributed the ruun-down feeling to the high blood sugars and made an appointment with my endocrinologist.  She, unfortunately, couldn't see me for a couple of weeks, which was really annoying.  My primary care was similarly booked, even though I told them that, while it wasn't an emergency, I was feeling pretty bad.  I'm sorry, they said, but the soonest they could give me was the next week. 
Around this time, I paid a visit to my chiropractor (who I figured was about as good a source as anybody for a diagnosis at this point), and after a few tugs and pulls, he says my iron is low. I stop at CVS and buy some over-the-counter iron pills and figure I'll be good as new soon enough.
I was finally able to get in to see my primary care physician, and upon walking in the room and seeing me, he gave me the very helpful diagnosis of "You don't look very good."  To which I replied, "Well, fix me!"  Okay, I didn't, but in my head... Anyway, he took some blood and told me to get some rest and he would get back to me, but it's possible I was anemic (which would have gone along with the chiropractor's theory.  And he didn't even have to poke me with needles.)
That very night, I get a call from the lab people that not only was I anemic, but absurdly anemic.  Like, "How the hell are you still standing?" anemic.  It was so bad that they were sending an ambulance to take me to the emergency room.  I found this really strange and scary, since I had never been in an ambulance before.  When they arrived, they asked me all kinds of questions that i had no answer for, and I had questions that they didn't have any answers for, like, "why is this happening?" They said, "Well, you called us, didn't you?"  No, I most certainly did not.
After hours in the emergency room and several degrading tests on my body, that night began hospital stay #1, about a week's worth of blood transfusions, bone marrow biopsies , chest x-rays and CT scans while they tried to figure out what was wrong with me.  This is where I envision my doctors sitting in a room with a white board being scribbled on by Hugh Laurie, eliminating possibilities and placing bets on my life.  Still, the red blood count went back up, and I was released, since no one knew what the hell was going on anyway.

It was not to last, a few days later, just before my birthday, April Fool's Day, I was back.  Now, they were fairly certain I had Wegener's Vasculitis, a rare one that causes your body to produce way more anti-bodies than it needs to fight off infections that you don't really have.  This causes probs for your kidneys, which race to keep up, and lungs, which is where most infections go.  This time, no more marrow biopsies, thank God, because I thought that was the most painful I had ever experienced, until I got the chest tube put in.  Then, that became the most painful thing I had ever experienced.  And let's throw in one more tiny wrinkle: the bastards punctured my lung while putting the tube in and it collapsed, nearly killing me.  Of course, I had signed a waiver saying that sometimes weird things happen in hospitals, so I can't sue.  Also, my blood sugars were all over the place, to the point where I actually had to spend a day in tensive care so they could monitor me while they got them back to normal.  When they finally straightened all that out, the tube drained my lung and I was again sent home, feeling a little better and on a lot of drugs, most notably 80 mlg of Prednisone, which are steroids that are prescribed for almost anything from poison ivy to, apparently, Wegener's.
I lasted a week this time.  I even went back to work.  I was working a rare Saturday when I got extremely short of breath walking down the hall, and decided to call an ambulance.  Despite being somewhat embarrassed and pissed that I would most likely be admitted again, I think this was the right move.  Of course, I was admitted again, but not before they drained a giant bag of brown liquid from my lung.  This was obviously so insane that the doctor asked if he could take a picture of it.  I didn't care, but why would anyone want a picture of what amounted to brown lung-snot? 
This time, I got the full truckload; a thoracic surgery team, a rheumatologist, an infectious disease team, a nephrology team, a guy from the Joslin Diabetes Center to come over and adjust my insulin every day, and a bevy of nurses and technicians.  With this many people working the case, the damn well better know what's going on.  They finally did.  Knowing that my immune system was being suppressed by the steroids, and my badly infected lung (it basically looked like one of those geode rocks you can buy at the Museum of Science gift shop) would not heal on its own because of that, Dr. House came up with a revolutionary technique to use two chest tubes, one for in and one for out, and inject saline into my lung while I jostle around in my bed to shake up the lung gunk that wouldn't come out on its own.  This happened every six hours for a few days, and let me tell you, if you haven't felt the inside of your lung fill up with cold saline solution so much that you can actually taste it, you just haven't lived.
Still, the technique worked.  Basically, we were artifically doing what the body usually does naturally, when that body has a working immune system.  Actually kind of cool when you think of it.  So cool that i think I ended up in some medical journal somewhere, although probably as Patient X or something.  And so, on June 1st, I was released again.  This time, I had a visiting nurse coming every day, and was infusing myself with anti-biotics daily, and was told how to stave off infection (which they never actually said anything about before when they would let me go home.)  This was definitely scary, because I was very afraid I'd just get sent back yet again, but the visiting nurse, Cathy, was awesome, and she told me that I was much better off at home takig care of myself than at the germ-ridden hospital.  Apparently, she was right. 
In a couple days, it will be September 1st, and I have not been back.  I am working, riding my bike, the prednisone is down to 15, and I can walk down the hall without calling an ambulance.  All the tubes and needles are gone.  Cathy is, sadly, gone.  My appointments are farther apart.  The surgeries that I was supposed to have ended up being unnecessary.  I am starting to feel "normal" again.
What have we learned, besides that life can be like an episode of "House" sometimes?  That perseverance pays off?  That there are caring, nice people in the medical field, and tehre are dopes who will pierce your lung if they're not careful?
I don't know, man, but I will offer this piece of advice; if you start coughing up purple stuff, go immediately to your chiropractor.   

1 comment:

Clay N. Ferno | Clay Fernald said...

Durs- What a year, indeed.

So glad that you are feeling better!
Visiting you in the hospital, I was scared, pal.

Thanks for another awesome update to your blog. We can all feel better, and be less scared because we know what's going on.

So, Roid-wierd aside, it will be great to hit the Gymit with you and get awesome with our Hobo beards. Thinking about comics to infinity and beyond!

Your pal,


P.S. Is that geode rock you were describing YOUR Krypronite?