A senseless experience...

Top Ten Ways to Tell Your Hospital Room is Actually a Sensory Deprivation Chamber:

10. The "frills" of your room are the bed, table, and a metal chair.

9.  There is no clock on the wall so you have no idea what time it is.

8.  There are no windows in said room making it impossible to know even what season it is let alone use the sun to estimate with (refer to issue #9.)

7.  The miniature flat screen TV in the upper right hand corner of the room is not connected to power or cable.  It's only function is to tantalize and mock you.

6.  There is no cell service in your room, further cutting you off from civilization in general. 

5.  No restroom facilities are to be found--no sink, no toilet, no shower, no water at all.  No hygiene.

4.  No thermostat on wall.  Your room will be hot and stuffy and there is nothing you can do to change it.

3.  The room is slightly larger than a walk in closet (except for Oprah's--her humongous one doesn't count.)

2.  The putty colored walls lull you into a beige induced haze.  No bland wall art to break the monotony.

1.  Finding out Room 29-Y was a secure holding room in the former ER--recently transformed into a "Med/Surg Holding Unit" or as I lovingly call it Obamacare Overflow.

My pitiful pft performance of 22% at Wednesday clinic earned me a golden ticket to UCH hospital.  I considered cancelling my appointment when I woke up to 8 inches of snow and it was still coming down but waiting for next Monday didn't seem like a good idea.  Thankfully my sweet husband was able to clear his schedule to drive me down.

Finding out my unit was full (the expansion into the new pulmonary wing will be finally coming in June) did not make me a happy camper.  And had I known I would be stuck in the worst hospital room ever, I might have rethought things.  But luckily for me, the nurses were fabulous and tried to make a difficult situation work. The worst part was having to lug an oxygen tank and IV pole to the community restroom and try not to think about the possible germ sharing going on.  One does not often get the wonderful opportunity to wash their face and brush their teeth in a public bathroom.

Then this morning when they clued in I had MRSA (hello, it wasn't a state secret), I was banned from said bathroom and well, lets just say a portable commode entered the equation.  Not cool especially with no sink to wash up with. Thankfully a "real" room became available this afternoon.  I've never been so grateful to see a doorway on Ninth West with my name on it before.  Hopefully the most eventful part of my stay is behind me and days pass quickly in my room with a view.

My friend's house on May Day--Fort Collins obviously
didn't get the memo that winter is supposed to be finished..
Kids got yet another snow day and low temps broke records.

Of pride and prayers...

Glasses Saga:

Tomorrow marks the beginning of Week 8 of my continuing "Vanity Trial." *refer to previous post   Surprisingly, I've found myself fighting off the desire to tell anyone who even glances at me that I'm having eye surgery.  As I analysed  my intense need to over-share this bit of medical information, I came to one conclusion--I'm a nut job.

Delving further into my psyche, I realized by defending my use of the glasses (I HAD to wear them....gasp) people would know that I know that I know I look unattractive.  There would be no one out there thinking, "Someone should tell her those glasses aren't a good look for her since she is out in polite society" if I could help it.  I would turn their criticism to concern in an instant!  Yes, I know how pathetic that sounds.  But dear reader, you would be pleased to know that as time goes by, I am reigning in my insecurities, looking people in the eye, and sparing them my sob story.  Progress...it is a good thing.

Duke Update:  

I am currently scheduled to see my transplant team on May 24th.  It will be a quick trip to North Carolina and back.  The plan was to dazzle them with my lung function, however my lungs are less than dazzling lately.  The past two weeks have been harder with shortness of breath, small lung bleeds, coughing at night, and higher sugars. These are sure signs of a lung infection running amok.   I have debated going to CF clinic and getting some medication going but I keep talking myself out of it.  Since my team wanted the Duke doctors to get a sense of how things truly are, I've been resisting starting antibiotics.  Not sure if I can make it another 4 weeks without help.  I don't want to do more damage by waiting too long to fix an infection and the past couple days have felt worse.  Clinic is in the morning so I better make a decision soon.

Spring:

With a winter eerily devoid of snow, water managers here were already issuing water restrictions for the upcoming summer.  In fact, we had a wildfire in the foothills that burned for three days at the end of March.  It brought back bad memories of last summer's devastating fire season.  My church asked that we fast and pray for moisture and I know other area congregations were also praying for that blessing.  On the 16th of this month we got over 22 inches of heavy, wet snow in one storm and 6 inches in another about a week later--breaking April snow records, giving kids 2 snow days, and helping bring water storage levels up considerably. Our family had bought two sets of Colorado Rockies tickets--yep, you guessed it--right in the middle of both snow storms.  One game broke a MLB record for coldest baseball game temperature--22 degrees with a windchill making it feel even worse. Luckily we talked ourselves out of attending that game since it went into twelve long, freezing innings.  We would have been popsicles. The second game was cancelled and rescheduled--lesson learned.  Word has it that despite our 80 degree temps the past two days,  it may snow again this Wednesday without us even having a Rockies ticket in sight.  We are just grateful our prayers are being answered.

Two weeks down and only ten to go...

If only I could....

Let's just say I'm scarred.  Flashback:  Me and a "popular boy" were the last two leaving 7th grade science class when he turned around and stated frankly, "You might be cute if it wasn't for your glasses!"  He walked off and I was left to gather up the shreds of my self esteem.  Thanks Tracy B. for your insightful comment. (I won't give his full name just in case he gets a crazy idea to google himself and finds my blog--my luck he would be some kind of blog critic!)

Yes, wearing glasses that closely resembled the bottom of coca-cola bottles only added fuel to the angst I experienced through middle school and the beginning of junior high. Contacts, thankfully, were just coming into their own and quite literally saved my dwindling self confidence, stopping my need for even stronger prescription glasses.

So recently hearing I needed to be out of my gas-permeable lenses for 3 months before having eye surgery sent me reeling right back to Mr.Whiting's science class.  How does it happen that a 47 year old woman still  cares what the "popular kids" think of her?  Wouldn't you think I should have evolved past those self-centered thoughts by now?  And even more bewildering, why does aforementioned semi-young woman need cataract surgery in the first place?  Inquiring minds want to know.

At my eye doctor appointment in February I found out that not only did I need my cataracts removed but I've also developed glaucoma.  Oh joy, one more thing to add to my body-is-falling-apart list.  Now I use eye drops every night to reduce my eye pressures.  Hopefully the medication will keep my optic nerve from further damage.

So I am counting down the weeks of my "Vanity Trial" and praying that I stay well so surgery can go as planned allowing my glasses to go back out of sight--where they belong.

Testing, testing, 1,2,3...

Well, I ended up staying 18 days in the hospital and am breathing much better now.  The Colistin seemed to do the trick and got rid of all the gunk I've been producing since November.  It is wonderful not to cough all day and then cough all night.  The day I left UCH I did one last pft and saw an increase to 28%--not exactly the number I was aiming for but I improved nonetheless.  I wasn't too happy finishing three more days of home IV's but I was ready to get outta there!

Thanks to the scheduling of my wonderful doctor, I was discharged on Feb. 15th and walked directly over to the Outpatient Pavilion to the ENT clinic for vestibular testing for my vertigo.  They were the craziest tests I've ever had.  First they put electrodes on my face and neck and then put an instrument in my left ear that sounded like a very loud and ticked-off woodpecker.  The technician then switched to the right ear and I heard nothing--no response.  "I guess we know which ear is affected," she said.  We did a few more interesting tests then it was time for Return of the Frogwoman!

Looking through my fancy goggles!

The next series of tests required me to wear infra-red goggles. Yes, I looked like I was in training for a covert, black-op mission.  I was feeling confident with how things were going until things truly went black! The technician blocked the goggles to all outside light.  Now I was floating along in my little sea of darkness--not a good place to set sail when you're already equilibrium-ly challenged.

I must digress here and say that so many times during the tests, the words "that's so cool" came flying out of my mouth.  Our ears are truly amazing things.  How they work to process sounds and synchronize with the eyes to create balance is incredible.  They can test for so many functions our ears accomplish--ones we don't even have to think about.  The scripture, "All things testify there is a God" came forcefully to my mind several times.  Not even considering the complexity of all our other organs working together, the ears alone testify to a Creator.

The final part of the vestibular testing was the water-boarding part of my mission.  The technician flushed very warm water in my right ear, whatever.  Then she did the same to the left ear.  Whoa, baby that's when I began spinning in my vortex of blackness--not pleasant at all.  Finally, a little red patch of light came on in the goggles and she told me to focus on it and eventually the spinning would stop, which thankfully it did.   Then she repeated the process with cold water.  Same results.  No response on the right and whirling dervish on the left.  To add insult to my under-performing right ear, she next flooded it with ice water. Yowza!  Waves of goosebumps from the top of my head to the tip of my toes, but no response from my ear.

Diagnosis:  balance center of right ear completely gone.  Kaput.  Thanks Tobraymyicin.  Bad news, the nerves are poisoned and will never regain their function--hence the "permanent" part I heard and read about.  Good news, the left ear and both eyes will learn to take over the function and my balance will be nearly normal, however I will always have to be very careful in the dark.  It will take some time but already my world is much less shifty than it felt a month ago.

Next I went to the sound-proof room for hearing tests.  These were fun with lots of "push the button when you hear a sound" exercises.  After the sounds went on for awhile, I started to wonder if I was truly hearing things or if it was my imagination.  I really thought I'd passed the test with flying colors.  Easy peasy.  Come to find out there were sounds I didn't know I missed.  Thanks Tobramyicin.  Good news, I can hear.  Bad news, I've lost some significant range of hearing.

The past two months have been long and miserable but there is hope. I feel very blessed to see improvement with my symptoms instead of the steady worsening that was occurring. I'm thankful my ear was designed with a back-up system to make things right again.  I'm glad I'm making it through this test.

Made of unstable molecules...

There's nothing like feeling you are made of unstable molecules..both mentally and physically.

If I could sum up the past three months in one word, frustration would be it.  I've had to work extremely hard to keep a positive attitude going and the effort is exhausting.  I haven't felt good and because of that I haven't felt motivated to do or accomplish much.  So then I feel guilty that I am wasting the precious time I've been given.  I'm struggling but I'm not giving in.

After a December of IV's that were ineffective because of a highly resistant strain of Pseudomonas, I was right back to coughing all night and feeling breathless with any exertion.  I had extended my treatment to the extra fourth week because of all the mucus that still seemed to be there despite all my efforts. Because of the extended time on Tobramyicin, my cf doctor told me to pay attention to my ears for any ringing, fullness, or hearing loss.  If I had any of those issues, I was to stop the drug immediately.  No issues presented themselves so I thought I was in the clear.  Not so.

Five days later I woke up to vertigo and it has been my constant companion ever since.  It was December 29th, the day after the wedding.  I thought it was just an inner ear disturbance that would work itself out in a day or two since I've had that before. Again, not so.

Vertigo is funky...everything shifts and moves even when you don't.  However, walking is the worst.  I feel like when I walk, the world bounces.  If I move around too much or even use the computer very long, I have to sit still or lie down to make the moving sensation stop.  If I don't, I start to feel sick to my stomach like I've been on one too many carnival rides.  Sometimes I stagger to regain my sense of balance which is quite entertaining  To make matters worse,the vertigo seems to be getting worse over time, not better.  Discouraging.  Aggravating.

I'm still waiting to see an ENT specialist and get some vestibular testing done.  Hopefully they can give me some strategies to make things more bearable until it subsides.  At my clinic appointment on the 28th of January, my cf doctor told me that the vertigo will go away eventually.  I just started to cry.  I was so relieved to know I wouldn't have to put up with it for the rest of my life--like I had heard and read online.  She said all of her patients who have experienced vestibular toxicity have recovered their normal balance.  I felt like the weight of the world lifted off my shoulders.  I had even begun to rethink my transplant plan because I was looking forward to being able to run and dance and just move without so much effort and now the dizziness would still take that away.

And now, here I sit at the end of Day 10 in my private room at the Denver Bed and Breakfast.  My clinic visit pft numbers of 25% were low enough to convince me that I needed to do something even if only a month had passed since my last attempt at fixing things. I was hesitant to take more medicine in case they messed up my ears more.  However, my new cocktail of Colistin, Meropenem, Ceftaz, and Vancomycin seems to be working well.  I am encouraged.

I had to cancel my appointment at Duke this week and I will miss Christina's graduation from bootcamp tomorrow. So frustrating.  I was trying to wait it out so I could go to them both, but once I found out that getting on the plane would make the vertigo worse, I gave up.  It was bad enough feeling like I was breathing with an elephant on my chest, there was no way was I gonna risk puking all the way to North Carolina or Illinois as well.

Here's hoping things stabilize soon. :)