Duke on the two month plan...

It's hard to believe that 2/3rds of the summer is over--July whizzed by.  Rheid and I flew out to Durham for my second check-up at Duke from the 24th-26th.  Our trip got off to a rocky start thanks to an overzealous airline employee. We got an oxygen Nazi at the gate who had an issue with my outdated Dr note.  I used the same one two months ago and no one had a problem with it...so who knew?  I had even shown it curbside at the Southwest counter, then a second time at the gate counter, and then when asked for it the third time this bozo at the gate gets all "you have to follow the rules" huffy and says we will not be able to get on this flight.  We had been there for over an hour waiting and could have taken care of the issue way earlier if we'd have known.  He was a pill head (excuse my language).  Anyway when he said we would have to wait for the next flight (which was tomorrow) that's when I began to work myself up --  can you tell??!!  We had a couple of people come up to us after the flight and say they were so glad we were able to get on.  The guy caused a mini scene about it.  I told the supervisor who he called over that I had no problem following the rules if they would consistently follow their own policy then I would have known two years ago that this paper was no longer valid.

Dr. Gray

At Duke I met with a new pulmonary doctor, Dr. Gray.  After seeing my dip in pft's  (30% last time and now 25%) and learning what had gone on with my embolizations, she felt it was time to move forward with transplant.  I wasn't terribly shocked to hear it but I still wasn't sure about the timing.  I had been praying that the doctor and the team would be inspired to know the best course of action for me so I accepted her decision.  The transplant team met the following Tuesday and my coordinator called to let me know that the team decided to wait and see how the next two months go instead. That decision felt okay too.  It's a hassle and a huge expense to go every 8 weeks but I want to do what's best for my future transplant success.  While there I also updated my barium swallow test and saw Dr. Wolf, the infectious disease specialist, as well.

Christina, who is stationed 3 1/2 hours away in Norfolk, drove over to visit us this trip.  We took her and Sam, her partner, out to dinner and played some mini-golf.  We enjoyed spending time with them.

Also this month I attended my first MLS game:  Colorado Rapids vs New England Revolution.  Josh invited us to go with him and it was a blast.  He is turning his old parents into soccer football fans slowly but surely.

Boys at the game--grateful the sun went behind the stadium.
It was the perfect night for a game.

Learning all the soccer football etiquette--like standing up for corner kicks. 

We also celebrated Josh's 27th birthday this month. It's hard to admit that your baby is 27 when you are only slightly older than that yourself!

Staring down his little cousin, Max, who wants
to blow out all of Josh's candles

Here's hoping for some healthy days ahead so I can continue on the two month plan.  It's a plan I can live with.

I can see clearly now...

Hallelujah!!!  The glasses are gone...finito..zip...nada...outta here!  Good riddance to bad rubbish I say.  I had my second cataract surgery on Tuesday and now I can see out of both eyes.  Walking around for two weeks with one eye fixed and on the mend while the other eye was seeing, well...nothing actually, was annoying beyond words.  But now the left eye received it's surgical attention and I think I am on my way to great vision without glasses or contacts.  It has been so awesome opening my eyes in the morning and being able to see!  Gone is "blob world" where I dwelt until I patted down the nightstand and headboard trying to feel for where I left my glasses the night before.  It's a whole new way to look at life.

Unfortunately other places in my life are lacking clarity right now.  I was hospitalized a little over two weeks ago because of heavier bleeding in my lungs.  The doctors decided to go in and embolize the problem vessel.  They ended up repairing the previous embolized spot and 3 other places in my lungs that looked menacing.  But I was home for just a two days and to my utter frustration I began to bleed again (although not as heavily thankfully.)  I was hoping for a year or more of relief, like I experienced before, from the constant worry of springing a leak every time I cough.  But it was not to be.

Ever since the procedure, I have felt heaviness in my chest and the sensation/feeling that I get when a bleed starts. It's been very stressful.  I also felt like I wasn't breathing as well afterwards but they thought it was probably from the sedation and not doing active airway clearance for a few days.  Well, I went for a check-up on Monday and my pft's are back down to 23%.  So discouraging.  So after waiting for cultures to grow out, they started me on two home IV's.  These aren't the big guns since they want to keep my kidneys happy and I don't have a full blown exacerbation (not coughing all the time, etc).  They are hoping that this little hit will clear out the pseudomonas enough to help me breathe easier.  Hoping this isn't my "new normal" thanks to the procedure.

With all of this hullabaloo my exercising/rehab has taken a hit.  I couldn't see to drive over to the Center plus I was worried that I would cough and start bleeding and then I'd be in a real pickle.  I've been using my treadmill sporadically and I can tell that I've lost ground.  All of this has brought my anxiety to the forefront and that makes me even more frustrated.  I'm afraid that Duke will want me to relocate once they see me in July.  I so much wanted my reprieve from transplant to last longer.  I'm trying to remember that everything is in God's hands and to trust in Him and His timing.  Just some days it is so hard to see His plan.   

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.

*********************

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.