Saturday, May 23, 2015

pleasantly confused (long post is looooooooooooong)

Pleasantly confused.  That's a doctor's nice way of dictating that the patient is a bit... well, confused.  As in Alzhemier's dementia, or some other medical malady that causes one to forget things.  I find it a tad amusing, and it brings a bit of lightness to an otherwise heavy situation.

Of course I sometimes manage to forget things as well.  Okay, not just sometimes.  A lot.  Things like why I walked into a certain room, or what it was I wanted to do next, or even to check the lists I make of things to remember so I won't forget them...  Things like writing in my blog, for instance.

I blame it on all of the surgery I've had over the years.  I swear the anesthesia manages to kill off brain cells, particularly those involved in memory; and this year, I had not one, but two more surgeries.

For those who didn't know, I had my right hip replaced at the end of February.  I had the surgery on a Friday morning and was sent home that Sunday evening despite running a fever.  I was told that I was simply dehydrated and to just drink more water.

Sadly, I was back in the hospital - and surgery -  a week and a half later.  It looked like I had a raging infection, and when they cleaned it all out, there was certainly plenty of stuff to clean out.  Mind you, I wasn't running a fever any more - hadn't for days - and the whole thing seemed far too much like other bouts of panniculitis I've had, particularly associated with surgery and/or severe bruising - both of which cause inflammation of the fatty tissue under the skin.

Panniculitis is defined as: ...a broad spectrum of diseases that involve inflammation of the subcutaneous fat layer of the skin.

My first bout was back in the mid-80s when I was in a vehicle rear-ended by a drunk driver.  The seatbelt caught me as it was designed to do, but the bruising to my left breast ended with a complete mastectomy to get ahead of the "infection" (a full week and four surgeries later, they finally decided they'd gotten it all, not realizing that the more they cut, the more inflammation they caused, and the worse it seemed to get).  Yes, I ran a high fever.  Not unusual for panniculitis, but it is a rare disease, so most doctor's have never seen a case (or even heard of it, most likely).

Yes, there was a lot of "discharge" that looked like it could be pus.  They cultured everything and tested for everything and - guess what?  Nothing.  Not one thing grew out.  Of course, there wouldn't be anything growing from inflammation; it's not an infection.

My next bout was about 6 months later when I went in for reconstructive surgery.  Once again I ran a high fever, started oozing lots of icky looking stuff (check out serosanguineous fluid).  Yes, it's kinda yellowish and tinged with blood - pus, right?  Nope.  Just normal bodily fluids collected around the area of inflammation.  Luckily for me, my plastic surgeon discovered that a basic reducing dosepak of Solu-Medrol worked miracles.  The drainage dried up, the fever was gone, and the wounds started to dry up and heal - all within 24 hours of that first dose of corticosteroids.

Fast forward to the mid-90s when I was in a minor fender bender.  My left knee struck the dashboard and a few days later, sure enough, another one of those "lumps" appeared.  Hurts like Hades, too.  Unfortunately for me, my plastic surgeon was on vacation in another country (skiing, if I remember correctly) so I got someone else who, like most doctors, wouldn't listen to me.  At all.  We called my surgeon's office and they got a message to him, and apparently he talked to the dope - uh, doctor - "taking care" of me, because he started to change his tune.  A little.

I have to take a moment to sing the praises of my plastic surgeon, Dr. Drimmer.  He actually came home from vacation early to take over my case.  How many doctors can you say that about?  He's still in practice, last I heard, so if you're in central NJ and need a good plastic surgeon, be sure to look him up.  He's the best!

Sadly, far too few doctors will listen to their patients.  When my older son was about 5, he fell on his scooter and jammed the handle bar into his thigh.  He immediately had a huge bruise, and I knew it was going to mean trouble.

Sure enough he too developed one of those awfully painful lumps, and off to the doctor we went, who sent us to a surgeon, who of course wanted to do an incision and drainage to clean out the infection.  *sigh*  I warned them that they wouldn't get much "pus" out as the inflammation hadn't been at work for more than a few days.  It usually takes a week or better to build up a large collection of serosanguineous fluid (for us, anyway).  I told them to give him the Medrol.  She looked at me like I'd grown a second head (a look I was all too familiar with by then) and said she didn't know what that was.  C'mon doc.  Solu-Medrol, a common corticosteroid.  She knew what it was, she just wanted to make sure I knew what I was talking about.  Even then, it didn't help.  She still had to go slice him open to find out I was right.

I've had other bouts - when I had an emergency C-section, when I had a hernia repair (from the C-section, yay), even when I was pregnant and had to give myself heparin and insulin injections - each of which caused their own little painful, red lumps, which eventually caused a fever, and... great.  Here we go again.

The biggest problem is the rarity of the condition, and how much it looks like a basic infection.  Doctors look at it and see the redness, the warmth, the lump, the fever, and eventually the drainage, and are convinced they're looking at an infection, not some "funky liquid fat thing".  If it looks like a duck and quacks like a duck... right?

Well, I got news for you doc.  This duck is actually an ugly duckling -  a swan, not a duck at all.
What burns my buns the most is the how much the doctors balk against listening to their patients.  I understand that they have to have an extraordinary amount of confidence in their ability to properly diagnose and treat their patients, or they'd never cure or save anyone because they'd be too busy holding back, wondering if they're doing the right thing.

But is it really asking so much that part of their decision making includes what the patient is telling them?  What do I know? I'll tell you what I know, if you'll listen.  You may know more about medicine than I do, but *nobody* knows more about this body than I do.  I've been living in it for over 50 years now, you know (52 as of tomorrow, as a matter of fact).

Now that both of my sons have also been diagnosed with it, I have an even bigger reason to stick to my guns and beat the doctors over the head.  I've known my boys their entire lives.  We've all three had biopsies that came back showing panniculitis.  My older son's biopsy actually came back as Weber-Christian panniculitis; younger son's was simply panniculitis, and my biopsy came back as vasculitis with underlying panniculitis.

We're lucky in that we found a dermatologist who listened to us and did the biopsies and has - over time - eventually agreed to simply treat us with the steroids when we come in with yet another inflammation.  Most doctors insist on trying the antibiotics first and watch it get worse for a week, then they want to torture us some more with incision and drainage, debridement, and wet-to-dry dressing changes... oh, yes.  Torture just beings to describe the hell I went through that first time.  I was in the hospital for a month, and those "wet-to-dry" dressings changes lasted for almost two weeks before they could do a skin graft.  Imagine an open wound, gauze and saline - you let it dry, and once a day you rip it off to take as much dead tissue with it as you can.  Now imagine that open wound is the size of half your chest, down to the chest wall, and around under your arm.  *shudder*  Yes, I have PTSD.  So sue me.

The last time I took my older son in to an Urgent Care, just a couple of years ago, I got the same old song and dance.  He even brought in a student doctor to show him how this needed the debridement and wet-to-dry dressing changes and... NO.  I stopped him right there, got up, and said c'mon kiddo, we're leaving.  We'll take you to the dermatologist in the morning.  The doctor didn't even look at me, just said "Fine." and walked out.  The PA at least looked up panniculitis and saw that I could be right, but she had no authority to over-ride the doctor, and in the end even she convinced herself that the doctor was right.  They didn't let us leave for almost an hour, waiting to see if I'd change my mind.  Sheesh.

So the next morning we saw the dermatologist, got the steroids, and he healed up just fine.  No antibiotics needed, much less all the rest of that mess.  I wanted to go back and rub it in that doctor's nose, but figured it wouldn't do any good anyway.  Not to mention I'm a wimp, and it takes a lot to get me riled up.  Mama bear will protect her cubs, but once they're okay, it's easier to just let it go, you know?  It's such a rare condition that the odds of someone else seeing that same doctor for the same thing are about slim to none (maybe even in the negative numbers).

Back to my latest round - after the second surgery, they sent me to a long-term rehabilitation facility for six weeks of IV antibiotics.  Three weeks in I was ready to go home.  More than ready.  I finally talked the attending into giving me the steroids.  He said he's just put in the chart that "the patient insisted".  I told him fine, put in there that I beat you over the head, I don't care.  Just give me the stupid steroids already.  And hey, guess what?  I started to get better!  What a surprise!  (/sarcasm off).  So I finally got to go home, even though I had to finish up the other three weeks of antibiotics "just to be safe."

I went out of my way to be nice  about it.  The attending even dictated that I was a "pleasant but rather unfortunate" patient.  I'm sure he thought I was confusing my infection for something else - at least, until the steroids kicked in.  So yeah - I guess I was "pleasantly confused".  I'm convinced that two more surgeries and all that general anesthesia will do that to you.

Does anyone know a doctor who specializes in rare skin disorders?  I could really use one - and more importantly, my boys could use one.  I won't always be around to look out for them.  I can only hope they've learned enough over the years to know when it's an infection and when it's panniculitis, and when/how to beat the doctors over their collective heads.

So anyway, that's how my year has been going so far.  At least my hip doesn't hurt any more.

I  think this is where I was going with all of that whining and complaining... I forget...