Monday, May 30, 2011

Update - Time Goes Bye

Two weeks is a long time.
This is by far my longest hospital stay of the four I've had since the end of March.  Tomorrow, May 31st, will mark two weeks.  I've been through four roommates, daily chest X-rays, CT scans, and countless chest tube boxes, and no doubt thousands of dollars.
The physical update is that things are looking much better, and the second surgery that they feared was absolutely necessary a week ago has been indefinitely postponed.  They have decided to stop flushing the lung every six hours to see how I handle that.  My kidneys have shown vast improvement, and my blood sugars are back on track.  So, we're continuing to watch the lung and the infection.  Hopefully, I will be sent home in a couple days, most probably with a chest tube and possibly a penicillin pump and a visiting nurse.
But it beats this.
I have written a lot in the past about the passage of time.  But it usually had to do with how old I felt I was getting.  This is a little different.  I have not left this hospital (Hell, barely this room) in two weeks.  It's humbling to say the least.  I have come to grips with the fact that I will not wake up tomorrow and it be miraculously cured and have this never have happened.  But that is just the way it goes.
Mostly, I am learning that there are only so many ways to pass the time.  Books, internet, Netflix streaming.  The Red Sox recent hot streak.  All great boons for sure.  I'd go insane without them.  But in the end, it is just me and my thoughts.  Honestly?  The small talk with the guys who bring me to my chest X-rays has gotten old.  The hospital menu?  Old.  Any sort of hospital humor?  Old.  This is not me being bitter, either.  This is the reality we live in.  The Royal Wedding was a big deal, and that got old, too.  Things get old and people move on.  Except when they can't actually go anywhere or do anything.
I've heard from a lot of people how great a job I am doing dealing with this.  I never really know how to respond, because I don't think I'm doing anything extraordinary.  This is reality, and this is what you do when it kicks you in the teeth.  What was my alternative?  Off the deep end?  Suicide?  Clearly, This is a new storyline on the Matt Dursin Show, and this is how it is being written.  But as far as what goes on between the scenes, well, that is the part I'm having the most trouble dealing with.  

Sunday, May 22, 2011

Big Health Update - Surgery Tomorrow

Well, I guess this was always in the cards eventually, but tomorrow I am having my first surgery.  As far as I can tell, it's not too invasive, other than the fact that all surgery is kind of invasive, but they don't plan to cut into any major organs at this point.  Apparently, the plan is to make 4 small incisions in my chest, one for a video camera, and three for some tubes.  The tubes will be to essentially "wash" the chest wall and area around the lung with saline and then suck it out, along with any infected material, and also to get a look at any damage that this infection may have caused.  Sounds easy, right?
Well, there is obviously some concern over my suppressed immune system from the steroids I've been on, which they have reduced but is still a pretty high dose.  There is a window where the rituxan I received a few weeks ago starts kicking in, so the hope is to do this surgery and get some healing in before that gets going.  Bottom line, the main worry is the healing after the surgery; whether the lung will heal itself, how bad it actually looks, and they also suspect there is a hole somewhere between my windpipe and the chest wall.  Not really even sure what that means, but it's all about the healing.
So, tomorrow I'll some out with more tubes than I went in, and hopefully they will do the job.  I'm sure everything will come out fine.  I mean, they wouldn't do the surgery if it was too risky.  I'm not sure doctors are in the business of gambling with lives, but I who knows?  I know I probably won't feel so great afterwards, but I do plan on ordering pizza for whenever my next meal is, so that's at least something to look forward to.  Other than that, it's in the hands of the professionals... and fate. 

Thursday, May 12, 2011

Get Better, Will Ya?

I'm going to try to not sound all "Woe is me" on this one.  Stick with me.  By the end, it should make sense.
The problem I am having, mentally as well as physically, is the lack of  improvement in my general health.  Obviously, there is no quick-fix, and I have been told that I will be on all of these medications for months, and lower doses for possibly years.  Still, I had hoped to see some kind of uptick by this point.  In fact, stairs still give me trouble, the chest tube hole is still leaking, my suppressed immune system has given me a slight cough, which doesn't help the lung that had the tube in it, and I am still very anemic (Yesterday, I received an injection of iron in my blood which was supposed to help with that, but it really just gave me a metallic taste in my mouth.  And freaked me out a bit because it was black.)  I have appointments the next few weeks with various specialists (lung, kidney, blood, and whatever the Hell a rheumatologist specializes in), and they all seem to have their own ideas on how treatments should proceed.  I feel kind of like that episode of Curb Your Enthusiasm where Larry is trying to decide to trust the doctor or the pharmacist.
That's the physical part of it.  Mentally, the challenge is trying to get back to something resembling normalcy.  Part of me (the brain) knows it will take time, and this is a bump in the road.  The other part (like the little devil that sits on the shoulder of Tom before he hatches his Jerry-snatching scheme in the old cartoons) says, "You're 35 now.  This disease struck you when you were in the best shape of your life, and it had taken all your energy to get there.  Pack it in, lard-ass.  You'll never have that strength again.  Kiss the hundreds of sit-ups and push-ups good-bye."
***I should note that the high dose of steroids I'm on makes me kind of bloated, and kind of hungry.  So while I suppose I'm not a "lard-ass," in the conventional sense, I do weigh more than I have ever weighed in my life.  And come on, this is my complaint here.***
One of the problems I have encountered is that some people don't "see" the problem.  Specifically my Dad, who keeps telling me that I should go back to work, and that I can't "milk it forever." And, bless him because he means well, but my brother too, who gave a slight chuckle when he asked how I was doing and I answered that there was no real improvement.  Maybe it was my delivery.  It's not their fault, really.  They see that I am up-and-about and hear my voice and figure that this guy is doing okay.  The fact that no one has ever heard of Wegener's before seems to be the stumbling block.  If I had cancer, they would probably react differently, despite the fact that they are very similar diseases as far as I can tell, and I was actually given a chemotherapy drug to treat the Wegener's.  Not saying I wish I had cancer obviously, it's just interesting to note people's reactions.  The fact that my own father, who saw me in the hospital every day for the over three weeks I was there (all told) would suggest I was milking this is a bit hard to handle.
But then there is also the rest of the world.  Pretty much everyone at work, close friends, even facebook friends whom I rarely see in "real" life have all wished me well, or simply asked how I am, or told me to just get better, fight thins thing, and not worry about the other stuff like getting back to work or not being a lard-ass (Okay, that was me.  No one else actually believes me to be a lard-ass.)  I posted a picture of my iron IV yesterday while I was waiting, and almost instantly had responses from my online support group.  A lot of them Iron Man jokes, but still, they cared.

Obviously, my dad cares, too, but these are the folks that really help me through.  Just the simple, "How are you's" and "Hope you're feeling better's" make it that much easier to carry on.  And the cards and emails and texts and messages and all the other billions of ways to communicate these days have really overwhelmed me.  I've kind of criticized the whole social networking thing and the misuse of the term "friends" in the past thanks to facebook and things like that, but I may have been being a bit too hasty in my judgment (I know.  Me?)  You are my friends, anyone who sent me a card or a message or thought of me or asked how I was or hoped I got better, anyone out there in the world who sent any kind of positive vibe, regardless of how I know you, you have contributed to my feeling better in no small way, and for that, I thank you.
Now let's get these "specialists" to do their job, and we'll really be rolling.

Wednesday, May 04, 2011

Health Update - "Roid-Weird"

Enough people read and expressed interest in the last blog post that I figured I'd give a new update.  Because a lot happened after I wrote that last one.  For one, I had to go back to the hospital for another 8-day stay.  This time, I was experiencing shortness of breath because there was fluid around my lung and it couldn't expand and I was basically suffocating.  So, I called an ambulance and was brought back in.  After more tests, including a CT scan that is still affecting my kidneys because of the dye they inject, and probably a record number of chest x-rays, it was determined that it wasn't an infection and the fluid was caused by the Wegener's.  At least they didn't collapse it this time.

They did, however, insert another chest tube (even more painful than the first one) and drain about 3 liters of fluid from in and around my lung.  That's a lot of crap to be in there.

The good news first is that I have finished my treatments of rituxan (the chemo-drug that is supposed to prevent remission) for at least six months.  Unfortunately, since they haven't been using this treatment for Wegener's that long, the doctors really aren't sure of what any long-term effects may be.  Still, they have said that you don't start seeing results until you finish the treatments, so hopefully now we will see something.  The other piece of good news is that my lung appears "stable," which at least isn't worse, as my doctor originally thought when looking at my latest chest x-ray (He didn't have access to the hospital ones.  Don't you love the way this system works?)  There are still some pockets of fluid around my lung that my body is supposed to handle, but it will take some time, and that still makes me a little short of breath when walking up stairs or any real distance.  It's definitely something we're keeping an eye on.

The rest of the news is that I am still very anemic, which also leads to being rather weak.  My blood cell count is very close to the level where they would like to schedule a transfusion, which I will consider if they do not go up (I have to go in for more and more bloodwork to see if there is any change.)  However, there is also concern that I am bleeding *somewhere*, so a transfusion might only temporarily solve the problem.  Because we don't know why the blood count continues to be low, they also want me to schedule a colonoscopy to see if I am bleeding in my intestine, which I am certainly not looking forward to.

Beyond all that, I am still on a very high dose of steroids, which does all kinds of crazy things to me (I've started calling it "roid-weird."  Like roid-rage, but different), and my kidneys are still being affected.  And there is some concern over how the hole from the chest tube is healing (or not healing).  So, the bottom line is I still have a long way to go here.  A lot of uncertainty.  Hopefully, it will all come together as we go along, and hopefully the tapering off of the steroids will be the first step.  At this point, I'm still lounging around the apartment, looking bloated and going to a seemingly endless line of doctor's appointments.  I guess it could be worse, though.  At least I am home, hopefully for awhile this time.