Oh Duke, it's been so long...

Well, I could put it off no longer so my sparkly clean lungs made their triumphal appearance at Duke last Friday the 24th.  After an x-ray, blood work, pft, arterial blood gas draw, and 6 minute walk, I met with Dr. Norfolk to go over the results.  She is fabulous--very approachable and thorough.  Here is how it went:

Dr. Norfolk

1.  X-rays looked similar to the previous ones they had on file there.  The IV's helped out with that I'm sure.

2.  Blood work looked good except for the 277 blood sugar it flagged as high.  Well hello, I had just inhaled a bowl of Raisin Bran and a yogurt on my way over to the clinic to make my 8:00 appointment.  I knew I'd get busted  testing so close after eating breakfast.  But a gal's gotta eat!

3.  My pft was an amazing 30%.  Yes, the IV's most definitely helped along with the extra prednisone I am tapering off of.  Open airways are a pft's best friend.

4.  My blood gases showed a slightly elevated amount of CO2 in my blood but still within a good range.  However now my poor wrists look like I tried to end it all.  They bruised to a mottled purple color due to them fishing to find my rolling artery on the first attempt then hitting paydirt on the second.  Ouch!

5.  In 6 minutes of walking I covered 1,400 feet.  The transplant docs like to see at least 1,000 feet so I knocked this one outta the park hallway.  Dr. Norfolk could tell I hadn't been a pulmonary rehab slacker back at home.  She said my strength is great and to keep it up! 

Conclusions:
My ever-dwindling antibiotic list is a point of concern.  I will meet with Dr. Wolf, the infectious disease specialist, to discuss a plan for transplant and post transplant medication at my next visit.

My glaucoma diagnosis does not interfere with the transplant.

My frequent hospitalizations suggest I should be seen at Duke on a more frequent basis.  They will schedule me to return in two months for another check.

All the tests I did for the evaluation are now outdated so I will begin to retake them at my next scheduled visit.  I won't do the "5 Days of Purgatory" but will have to do some of the tests over a couple of days and then finish the rest on a subsequent visit.  Oh joy, they weren't that much fun the first time.

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Visiting the Mecca of Duke basketball.

Since the lovely schedulers decided to set this appointment up on Memorial Day weekend, we decided to extend the stay and do some sight-seeing for the holiday.  Josh purchased a ticket and came along to check out North Carolina.  He was amazed at all the trees and had no sense of direction.  (At least I had a clue as to our general location most of the time.)  We took him all over Raleigh and Durham showing him where we lived, the Duke campus, the hospital, clinic, and Center for Living, shopping areas, etc.

We took a side trip on Saturday to Wilmington to visit my awesome cousins.  They took us on a tour of Historic Fort Fisher then treated us to Britts Donuts, a local Carolina Beach favorite. Smelling their donutty goodness wafting through the air was like inhaling calories and even made waiting for the long line which snaked back past several other storefronts worth it. They were a piece of fried heaven.   Then for dinner, the Walkers took us to an ocean side restaurant, The Oceania, where we dined out on the pier.  The seafood was fabulous and the company was even better.
 

Becky and Brad at The Oceania.

Sampling the local cuisine became part of the fun on Sunday and Monday.  The boys went online to find unique places.  One was a legendary steakhouse in Raleigh, The Angus Barn, which nearly gave Josh a heart attack. He had offered to pay for the meal before we got there and his eyes just about bugged out of his head when he opened up the menu.  Holy cow!  With picnic looking tablecloths, you wouldn't expect such high-class prices.  It was totally rustic chic. When the waiter places the napkin in your lap for you before taking the order, one can rightly assume you are out front of The Outback.  Even their outside portable bathrooms (indoor restrooms were being remodeled) were the standard by which all others will now be judged; didn't know outhouses could be so fancy.  FYI:  My steak was melt-in-your-mouth tasty.

Rheid outside Dame's...so yummy.

An "almost world famous" Durham eatery, Dame's Chicken and Waffles, served our final North Carolina meal.  Yes, that's right--chicken and waffles.  Who knew this unlikely pairing could taste so incredible. I will definitely be making a return visit to try all the other flavor combinations.

Doesn't it look deee lish us! 

For something fun to do on Memorial Day before heading to the airport, we stopped at Frankie's Fun Park.  The boys destroyed me in 18 holes of putt-putt golf, a round of skee ball, and at the shooting gallery.  Wish I could blame it on oxygen deprivation but alas, I just plain stink compared to them.

Thought I was doing great until I saw Josh's score.

The wall of this Durham shopping area says it all!

A mother's day gone to the birds...

I've decided that breakfast in bed is all about location, location, location.  A soft, feathery bed at a Hawaiian Hilton--good;  a plastic, adjustable bed at a Denver hospital--not so good.  But all things considered, I had a great Mother's Day.  Rheid came and spent the night on my couch allowing us to spend most of Sunday together reading, playing games, watching tv, and relaxing.  He left just before 7 p.m. since he knew my attention would shift to the Survivor finale I'd looked forward to all week.  I know, my priorities...  For Mother's Day he mounted a birdhouse/condo my dad made for me and planted a beautiful BigPink climbing flower at the base.  I can picture how beautiful it will become!  A Birdie Bed and Breakfast.

Christina came on leave from the Navy this week before beginning her new assignment in Norfolk, VA.  She surprised me with a 4:30 a.m. wake-up visit last Sunday.  I didn't get to spend much time with her but it was good to see she is doing well.

I'm on day 12 of admission and my health is improving.  After a week of IV's, my pft number went up to 27%. Wahoo!   It is so much easier walking around the unit and my O2 needs have gone down as well.  Three days ago my kidney function was compromised so they put the colistin on hold.  My little kidneys have never shown distress before so its been a bit disconcerting, and with the loss of Tobramyicin due to my ear toxicity, I don't have a lot of options left.  Not what I wanted to have happen.

My birdie condo with room for six!

Hopefully no snow will harm my new flower
and it will climb up up up.

As an incentive to move in, Rheid added
a squirrel-free feeder  to attract condo residents.

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.