There's no place like home for the holidays...

Yep, it's cold in Colorado
(Our front yard Snowman)

Well, I made it through the holidays--yippee!  As soon as I regrouped from being away from home for 3+ weeks and Thanksgiving was now only calories in my past, I focused on getting ready for Christmas.  I felt amazing, so being out shopping and walking the mall was not a problem at all.  I wanted to make sure I got things ready early since my body had been so undependable lately.  It turned out to be a good thing because that amazing feeling only lasted about two weeks and then I was seriously concerned that Santa might have to find a hospital chimney to deliver my presents.

We had already planned a family snowboarding trip to Breckenridge the week before Christmas courtesy of Grand Lodge.  All we had to do was listen to their time-share spiel and our 3 days lodging at 9,603 feet above sea level was free.  I figured I could hang out at the motel or check out the shops while my family strapped fiberglass boards to their feet and hurled themselves down the mountain.  Well, breathing at that altitude was harder (which I thought it would be) and even upping the O2 still didn't completely help.  It was three days of being slightly freaked out and hoping nothing would go wrong.  Just before heading home on Saturday, I gathered up my courage and took a gondola ride up the mountain side with Rheid and Christina.  It was a beautiful view.  Christina and I decided we should put "Ride a gondola up a mountain" on our bucket list just so we could check it off--since we were both so brave!  The boys stayed for the afternoon to watch Shawn White rip the half-pipe on the Dew Tour; they had a great time.  That night, back at home, I woke up at 1:30 in the morning coughing up blood.  What a tender mercy it was that the hemoptysis held off until I was home and breathing easier than I had been at night while in Breckenridge.

Two days before Christmas we got a perfect snowstorm--about 5 inches of fluffy snow to make our Christmas a white one.  We ate a yummy Christmas Eve dinner with the Larsen family then reenacted the nativity with puppets for the kids.  Christmas morning found us sleeping in until 7:00 a.m.  It was surprising to find out you can unwrap presents without it being dark outside.  Who knew??!!  We then went to church and remembered our Savior's birth with beautiful music and scriptures.  I love it when Christmas falls on Sunday.  The rest of the day we relaxed, ate leftovers, and played games.  It was a wonderful Christmas.

26 days, but who's counting...

I've wanted to write a blog update for several days now but found if I procrastinated long enough, the feeling passed.  Heaven knows I've had sufficient time during this hospitalization to write the great American novel (and get it well on it's way to publication--at least it feels like.)

Every admission comes with it's own unique set of physical and mental challenges which ebb and flow over the course of the stay.  Sometimes you surprise yourself with how well you "handle" a certain event/setback one day and then shake your head over how something less significant or even trivial can completely derail you the next.  Knowing this fact to be true, I still inexplicably strive for the "perfect" stay--the one where you are always cheerful, patient, anxiety-free, hopeful, hungry, calm, motivated, and grateful despite annoyances, incompetence, illness, misunderstandings, side effects, sleep deprivation, scary moments, uncertainty, and tedium.  I know.  I know.  It's mental to set yourself up like that each time and come crashing down to reality when I'm not Polly Perfect Patient but rather Irene Irate Inmate.

I've experienced a myriad of different emotions over the course of the past 3+ weeks.  Ones I think I want to write about and share but then I stop short in doing so.  I don't know if seeing things in writing will somehow make what I can now classify as fleeting thoughts seem permanent and unchanging and I so desperately want the outcome of these thoughts to not be permanent.  Or that if I somehow find voice to these thoughts, then I will have to deal with them sooner rather than later and I want to put them off as long as humanly possible.  (Even now as I'm reading this, I see my my attempts to explain my feelings are still trying to veil those same feelings.  Hmmm.  I'm starting to think a good psychotherapist could have a hey day with me.)   I guess I will put deep thought sharing off til another day.

I was ready to be discharged on Friday (11-11-11 was supposed to be a lucky day after all) until I had a mutant mucus plug go rogue the night before in the same area as the pleural infusion I've been trying to eradicate.  So frustrating not to mention painful.  So I've been doing a few new things to try and dislodge this onery critter.  More moisture was ordered.  I felt like I was wearing a cone of shame.  It was annoying and my neck went stone cold after a while but the mucus was less than impressed.  RT brought in a new vibrator/percussor to supplement my vest and give a more focused delivery of percussion to the right lower lobe, but it has not succeeded in it's mission.  So in a mucus trifecta, the doctor decided to try the IPV (Intermittent Percussor Ventilation) system.  It's like a nebulizer that gives short bursts of positive pressure air into your lungs that shakes you from the inside out.  Kinda creepy because they said it can cause bleeding in people with bleeding tendencies--hello, "people" describes me.  So I was somewhat hesitant to try this one but it wasn't so bad and it made me cough up stuff...just not that darned plug.  Tonight we tried slanting my bed down (trendelenburg) while doing a breathing treatment and being vibrated on all at the same time.  I think that has been the best combination so far.  Still not cleared and I'm way past frustrated but I will prevail!

Me with my prednisone-induced double chin breathing mist though my cone of shame.

I've been here long enough to see the seasons change.  No, I'm not referring to the view outside my window. I'm talking about the change of seasons I've been able to experience through the Gift Shop. When you've witnessed Fall merchandise change to Halloween decor, then out parades Thanksgiving chotskies followed by  snowmen mugs and all things Christmas--you know you've been here way too long.  My goal is to get outta here before chubby cherubs and hearts make their grand appearance.  Curse those places of all things cute but pricey.

Witches hat to spook my Halloween visitors--courtesy of the gift shop!

Tigger  with his long legs.  He learned how to walk while I was here. 

Dinner in the cafeteria with Tinkerbell--she didn't want to put on her costume, again.

University of Colorado Hospital is building on a new addition--you can see part of it outside my 9th floor window.   One day they brought in a window vinyl to warn people about looking at the welding going on outside.  Funny thing was that as soon as anyone, including medical personnel, walked into my room and saw the sign, over to the window they went to look outside to see if they could see the welding!  The power of suggestion is alive and well.

Oh no, not again....

Well, here I am again--back at the Denver Bed and Breakfast.  Is it:
a.  because I can't get enough of the all-you-can-eat gourmet food?
b.  because I miss my friends who work while wearing lounge wear and accessorizing with stethoscopes?
c.  because I sleep so much better in a bed that sports side rails and nifty buttons?
d.  all of the above

Actually, another early morning bout of lung bleeding teamed with an increased shortness of breath and rib pain led to this admission last Thursday.  Thankfully the antibiotics are kicking in and I'm breathing much easier.  I'm also glad a ct scan figured out the source of my rib pain, a small pleural infusion with heavy plugging.  At least now I can stop financing my chiropractor's next Caribbean cruise.  

Yesterday I had a bit of excitement.  About 3  o'clock I decided to take my little self outside to bask in the record setting 80 degree sunshine.  Just before leaving my room, I noticed my cell phone hanging out on my bed and thought, "Self, you shouldn't leave your cell phone lying around in plain sight when you're not in your room."  So I quickly pushed said cell phone under the bunched up sheets at the foot of my bed and left before any medical person could put a stop to my intended field trip.

An hour and a half later I was happy to return to the confines of my nice cool room.  Imagine my surprise when I saw my bed all spiffy and hospital cornered when I walked in. After ascertaining there was no little blue cell phone anywhere to be seen, my stomach just dropped.  Long story short, the CNA decided to change my sheets "just to be nice" and didn't notice the cell phone.  She had offered to change them earlier that morning and I told her they were just fine.  So with a colorful word, off she flew to the laundry on a cell phone rescue mission.   I guess I did a good job of hiding it after all--but lesson learned.

After the beautiful day yesterday, today I watched as a winter storm began forming over the mountains.  It is now snowing and the forecasters say we could get up to 12 inches of snow by tomorrow.  This is life in Colorado.

Nirvana, we have a problem...

These past few days have been extremely discouraging.  What I thought might be my ticket to less IV's and hospitalizations became instead a fast pass to shortness of breath, chest tightness, a need for additional oxygen, and overall huffing and puffing with the least bit of exertion.  By Friday I knew it wasn't just my imagination, people kept asking me if I was okay.  I couldn't carry on a decent conversation without sounding and feeling winded.  It was a TOBI flashback--like a bad trip.

So I fired off an email to clinic Friday afternoon and they told me to stop the inhalations and see if I felt better by Monday.  I was kind of hesitant to stop in case my symptoms had nothing to do with the Colistin and I had a bad infection taking over instead.   Well, I think it is safe to conclude that my experience with Colistin has come to an end.  Today I am breathing much easier--not great, but so much better.  Argh!  I really wanted my body to cooperate with this inhaled drug.  It could have made a huge difference--instead it created a huge problem.

Maybe the next big thing will be my answer...I sure hope so!

Move over for this bad boy....

It is not enough that all my medical paraphernalia takes up two cupboards and one drawer at my house and a fair share of countertop to boot...move over and make way for the newest in high-tech gadgetry.   Meet my newest nemesis buddy!

Kinda looks like R2D2 flying a space pod getting ready to shoot enemy invaders from Endor--right??!!  Well maybe not, but I swear you need a rocket science degree to figure out how to put the critter together.  Don't even get me started on the 50 step process to clean (immediately after each use) and disinfect (every day) the thing.  If it weren't for the speedy delivery this doohicky claims, it would be hurtling towards the death star right now.  And let me just say, if you've got a bit of extra money lying around, now would be the perfect time to invest in distilled water because there is gonna be a huge upsurge in sales courtesy of this little bad boy.

I officially began my inhaled Colistin today.  I was a wee bit nervous but I managed it all by myself without any allergic issues--wahoo.    Inhaled antibiotics and I don't generally play well together.  I was all excited when Tobi first came out but it was a dismal failure.  It actually made my breathing worse and after sticking it out for a month (I was determined this was going to be my nirvana), I ended up in the hospital fixing myself from the miracle drug that wasn't.  Never again I vowed.

No worries, I was told.  They are working on a new inhaled drug that is showing promising results.  Great!  But by the time Cayston was finally approved, I had already developed an allergy to the IV form.  Ugh.  So that was a no go.

Since my Tobi trauma happened years earlier while I was living in Utah, my Colorado care team thought I should give it another try.  Because my medication options are so limited, I reluctantly decided to try again.  Hello--what part of never again didn't I remember?  Dismal failure part two--but at least this time I only gave it a week before I pulled the plug on that experiment.

So that brings me to Colistin.  I've got a lot riding on our relationship.  If this works out between the two of us, it could mean less frequent trips to the hospital and feeling better in between times.  Here's to a new beginning.