What not to do when you go to the hospital

A while back I imparted my wisdom on gym etiquette and how to maintain a modicum of dignity during visits to your favorite exercise venue.  I will now extend my ever vigilant helping hands to your next visit to the hospital of your choice.  Either as a visitor or a patient.  I seem to have more experience in this department recently than I'd like, and I need to use that experience for good not evil...

Do not approach the nurses station looking for the cardiac care unit carrying a 12 pack of tacos from Taco Bell.  I don't care if they are your Uncle's favorite.  Just don't do it.

Nurses have, indeed, seen everything.  Your (fill in the blank) isn't special, one of a kind, or even  particularly interesting.  Get over yourself.

Do what they tell you.  Just do it and shut up about it.

Do not invite children to accompany your visitors or bring them to visit a patient.  In fact, straight out tell them to leave the little ones at home.  Or in the car.  Or in Cleveland.  They may be sweet, but they are stresses.  For you, for who you are visiting and for everyone else on the floor of the hospital.  Sorry, but it's true.

Hair gets messy when it's been lying in a hospital bed.  Teeth are grimy.  You feel like you've been run over by a truck and left there in an unattractive gown by the side of the road to wait until you feel human enough do something about it.  And no one who comes to see you cares.  They want to know you're OK, that you're alive and that maybe they can make you smile and feel better for a minute or two.  Let them.  Worry about your breath and your bed head another time.

Contrary to popular belief, a Hospital is not called a Spa for a reason.  It isn't one!  The staff is not waiting on you, they are taking care of your medical needs.  And no matter what it seems like, they are doing the best they can.  Cut them some slack even though you do feel like a great big ball of poopy.

Smile.  Whether you're visiting or a patient, someone is in worse shape than you.  Appreciate what you have don't wallow in what you don't. 

That is all.  I will be solving world hunger and the Greek debt crisis as my next acts of humanitarianism.  Stay tuned...

Relax, shrelax...

I know I'm supposed to be taking it easy, allowing my body to rest and recover from, oh, I don't know, HIP REPLACEMENT SURGERY 11 days ago.  But seriously, do you realize how difficult that is?  Prior to surgery I lived my life at an 8 on the pain-o-meter.  Post surgery, even with 30 staples in my ass and physical therapy exercises and stairs and everything else, I'm seldom hitting a 4.  How do I just lay around and do nothing?  So I putter.  Every trip up and down the stairs will get me better faster.  Every lap around the living room will strengthen my legs a little more.  Every leg lift and squat at the microwave while my coffee is heating is doing nothing but helping me.  And when I need to nap, I nap.  With all the enjoyment and appreciation that anyone should have while napping.  But until I get hit by the random medical malady bus that happens to enter our house every now and again, catch me if you can!

On the Cushing's front, it's roaring back with a vengeance.  To recap, my last trip to the NIH in May found that my cortisol level was way too low and chalked it up to a side effect from taking the experimental Muffy medication.  I stopped taking Muffy, and since then my cortisol levels have been bouncing around like a ping pong ball.  But it seems to finally calmed down a  bit and is consistently rising back up to my 24/7 all cortisol all the time production!  Woo-hoo!  I do love consistency!  This isn't necessarily good news.  I mean, it would be better if my system miraculously went back to normal and my cortisol level just stayed where it is supposed to be.  Yeah, that's not gonna happen.  So we know that the rogue tumor that's living in here somewhere is still cranking away wreaking havoc.  While I am recovering from surgery, my gaggle is working on a new medication plan to try to get the cortisol level under control.  We won't be going back to Muffy given what it did last time, but I feel pretty good that I was able to help find things out about Muffy in the study that may help someone else...and it didn't kill me in the process.  WINNING!

So my advice to everyone today is go forth and putter.  Do something on that to do list.  Have fun.  Laugh.  And appreciate the fact that you don't have staples in your ass. 

Wow!

Well, that's about all I have to say.  Wow.  I am recovering great so far from left hip replacement surgery last Wednesday 6/15/2011.  What a difference two years make!  The last time we went through this process was 6/24/2009 and we thought it went off without a hitch.  This time is 100% better and I chalk that up to having my Cushing's relatively under control and having my entire gaggle firing on all it's glorious cylinders. 

We did some medication madness to pre-dose my body for the trauma of surgery, and I can only assume it was a complete success.  I also was able to continue to workout (although not necessarily comfortably) at the gym up to a few days before going under the knife.  My cortisol level in the weeks running up to the surgery was jumping around quite a bit, but it at least wasn't off the charts high.  While this is still a Cushing's quandary, it worked in my favor in this case. 

Surgery was Wednesday, they sprung me from the hospital on Friday.  Got tired of seeing me doing laps around the nurses station I guess.  There were several people on the ward who remembered me from two years ago and it was like old home week!  Michelle, my physical therapist, and I got all caught up on her now 2 1/2 year old and her softball playing husband, Doreen, my night nurse, laughed about old TV shows and how young everyone else around us seems to be getting, and Jackie the social worker got me all set up with in home follow up care just like last time.  Really, I couldn't have asked, nor certainly expected, a smoother process. 

So now I'm home, doing laps around the house with my walker, terrorizing the dogs with the 4 legged silver thing with the tennis balls on 2 of it's feet.  I have an in-home nurse visiting a couple times a week as well as an in-home physical therapist.  This should go on through next week.  I'm doing my p/t exercises several times a day, tooling around the house and doing little chores as much as possible, and even walking up and down the street with my Florence Nightingale Keith.  Let's face it - I'm bored out of my mind, but the fact that I'm doing so well so far is comforting.

Post-surgery day 5

She is up!

Carol is home and moving around the house quite well. She is using the walker, but doesn't really need it. We have yet to venture outside, but that will probably take place in the next few days.

We had the home health nurse and physical therapist stop by yesterday and they were both very pleased with Carol's progress. So far things are going very well.

Keep the good vibes coming.

Keith

And we are home ...

Sorry for the delay in posting, but it has been a busy few days. You know how it is ... hip surgery, 1.5 days in the hospital and then home.

Home? Holy crap that's fast!

Not that I would wish hip replacement surgery on anyone, but this is the way to do it. First Class on Delta! Hard to get, but nice when you do.

Yes, our princess is comforably ensconced in her castle upstains. The surgery went perfectly (text book, as they say in the biz) and she was doing so well they kicked her out of the hospital.

So now it is a matter of TLC. Erin, Alvin and I are on it. Rest assured  our princess is well taken care of.

Thanks for all the prayers, good vibes and mojo. It is much appreciated.

Keith

Wow! That was fast

Hello all. I just met with the doctor (30 minutes sooner than I anticipated) and he said Carol's surgery was "text book." She did very well and is now in recovery.

Now it is on to the healing process and physical therapy.

Not sure what else to say other than Woo Hoo!

All for now.

Keith

And away we go ...

Carol just went into surgery and we get to wait some more. The estimate is she will be out around 1 or 2 pm. Please understand that is just an estimate and these things can take shorter or longer.

I will update the blog when I know more.

Now back to our regularly scheduled programming.

Keith

Cleaning, cleaning, cleaning...

That's the name of the game for the next 3 days here at Chez Nunes-Davis.  And no, I'm not using the word "cleaning" as a metaphor for life, health or some medical thing.  My house if FILTHY, and it's time to banish the grime.

I'm not a neatnik.  Anyone who knows me knows that.  My OCD never translated into cleanliness.  Not that I'm usually a cesspool dweller either, but a layer of dust on pictures hanging in the hallway doesn't, as a rule, send me running for the Clorox wipes.  But every three or four months, I'll get a bug up my heine about cleaning and attack the grime with all the tools available in the cleaning aisle at Target.  The fresh smell of sterile success sustains me for another 3 or 4 months until the bug strikes again.  Sadly, over the last year or so, those bouts of cleaning took a back seat to trying to survive and maintain during my fight with Cushings.  The collateral damage ended up being the internal health of our home.  It's DIRTY in here!

And why does this matter now?  Because on Wednesday, just 3 short days from now, I'm having my left hip replaced.  For those of you who did not follow this adventure two short years ago when I had my right hip replaced, the recovery process includes a bevy of staples holding the ginormous incision in my ass closed, the dressing on which has to be changed multiple times a day by my faithful nurse Keith (and he looks so cute in the outfit!).  Doing this, and recovering in general, in an environment of filth, flying dust and dog hair, is not the most responsible way to handle my recovery.  So I clean.

If anyone can tell me how to get a dog to use a Clorox wipe, please let me know.  I figure if a husband can learn to use a vacuum cleaner, a dog must have the ability to wipe down the baseboards!  Am I right?  Sadly Alvin is blaming his lack of cooperation on the whole "I don't have opposable thumbs" thing.  Lame excuse.  Totally overcomable.  Erin is above all this home maintenance.  She just harrumphs at the possibility of participating and goes outside and lays in her hole.  So I clean.

The good news is that the house is getting a much needed shine and sparkle.  The bad news is that my hip really hurts!  But the good news is that I'm getting it replaced in a few days.  Did I mention that?  So think of me spritzing, wiping, vacuuming, and scrubbing for the next couple of days.  And then the mental picture can move on to revolving around the staples in my ass.  It'll take more than a few drinks to get that out of your mind...my work here is done....

"Seriously, you do not want to put that in your coffee..."

It's like old times!  Nothing like a jug o' pee in the fridge to get the day started off right!  Betcha wish you were me right now...

Got good news/bad news last week from my last blood cortisol test taken on May 27th.  I left for Red Bluff on May 29th, so I knew I'd get results while out at Mom and Dad's house.  Friday June 3rd I got a call from Penny in my KC doctor's office telling me that my cortisol level was up to 13.7.  That was quite a jump from the blood draw I had taken on Monday May 23rd, and gets me right back up into Cushing's "too much cortisol" range.  I had been mysteriously low in the cortisol department for the last month or so and have been off Muffy trying to get my level back up to normal.  Being the over achiever I am, I shot right past that last week!

This is good news because it shows that my adrenals are rallying.  They had been suppressed for some reason and not producing cortisol even though my pituitary was telling it to do so.  It seems that Muffy had something to do with that, even though it isn't supposed to effect the adrenals at all, because having been off it for a month, my cortisol is going back up.  However, this is also bad news.  We're back to trying to control a moving target that we don't quite know why or how it's going to move.  Cuz it couldn't be easy or anything.  So I'm going to be having weekly blood tests, pee tests and trying medication doses in the coming weeks in conjunction with having my left hip replaced.  Good times!

I'm trying to just put myself in the hands of my gaggle who will eventually figure this, and all things, out.  I rely on their sense of sport and instinct to respond to a challenge to set me and my endocrine system right.  In the meantime, I'm watching for symptoms of out of control cortisol to return.  Will I wake up tomorrow 50 lbs heavier with a face like Shrek?  Will I start to lose the muscle I've been able to rebuild over the last few months?  Will I sleep through the night or return to the days when sleeping past 2am was a luxury?  Tune in to find the answers to these and other pressing questions on the next installment of "Days of Our Cushing's".

Oh, and today's most favorite thing: baby dill pickles...Discuss...