Thursday, November 21, 2013

And when she went there, her cupboards were...

I am a blessed gal.  My "church family" takes such good care of me.  They watch my struggles and offer what they can to lighten my burdens.  For the past two weeks they have prayed for me specifically to feel stronger physically and that my quality of life could be improved.  It is a humbling experience to be the recipient of such faith and I can testify that their prayers have been heard and I have felt increased strength.   It's hard to describe the difference I feel but it is real and I am truly grateful for their love and concern.

The Beehive girls (12-13 year old young women) asked me on Sunday if they could come over and do some service for me.  They were such sweethearts to offer but I couldn't think of anything I needed right off the top of my head.  Their leader made a couple of suggestions then mentioned washing the fronts of my kitchen cupboards.  Eureka that was it!  My cabinets look terrible because of some rouge varnish-type stuff my dear husband put on them a while back.  The cabinet fronts looked good at first but then some awful chemical reaction must have taken place and it made the finish go all wackadoodle.  So now they have a white dry-looking exterior--not at all what oak cabinets should strive to look like.

So last night the girls and their leaders came over and washed down the fronts of my cupboards and then rubbed them with English Oil.  It's not a hard job but it would have taken me a couple of afternoons and I would have been completely exhausted.  It took the girls less than forty minutes and they had a blast singing and talking while they worked.  Now my cupboards radiate happy shiny vibes instead of looking tired and drained.  So now for Thanksgiving my kitchen will look much better and I will feel gratitude in my heart for these wonderful girls every time I look at my doors.

"And when she went there, her cupboards were far from bare, they were full of love!"

Before the girls worked their magic.

Tate, Sydney and Joanna hard at work.  Aren't they
the cutest girls ever??

Cabinets are starting to shine.

Sunday, October 27, 2013

A view from the window seat...

Survived another Southwest airlines trip to North Carolina last week.  It was the first time I've flown without a direct connection.  So because we waited too long to buy non-stop tickets, I can now say I've been to Chicago--if only the Midway airport.  Unfortunately, it was overcast and misty so my view wasn't the greatest but I saw the Chicago skyline from my over-priced window seat. It looked amazing.
What my concentrator looks like.

Oh window seats.  I have a love/hate relationship with you.  I love being able to look out the window and see the farms--especially with their center-pivot circles, the highways, rivers, mountains, clouds, etc.  To get such a different perspective is refreshing.  But I hate being told I "have" to sit there.  Customers lucky enough to take POC's (portable oxygen concentrators) on the plane are asked to sit in the window seat for safety.   I guess if we were to crash, my hand-pulled machine along with its air-sucking owner won't jam up the escape route of those who can race out of a burning aircraft.

Since I have to maneuver/tuck/stuff it under my front seat, it not only takes up all my leg room but also makes a quick bathroom run completely impossible. So of course, guess who began to feel those unmistakable urges shortly after liftoff.  The complimentary in-flight beverage only added fuel to the madness.  By the time my 3 1/2 hour flight landed, I had goosebumps I had to go so bad.  I know, too much information, but I was seriously wondering if the air traffic tower would receive an emergency distress call from my pilot informing them that a passenger trapped in the window seat had exploded.  Yes, it was that bad.

Heard back from my transplant coordinator on Tuesday.  The team still believes I am too early to relocate--just what the doc and I discussed.  I was able to delay my next trip for four months to save some money and to minimize my exposure to circulating germs in the plane.  I will need to stay in contact with them should I need to be seen earlier, however.
Met my good friend, Cheryl, in the clinic hallway.  She is 1 year
post transplant and doing fabulous!  Cheryl was on hospice
and decided to pursue a transplant.   She is my miracle.
This trip we stayed an extra day so we could drive to Virginia and visit Christina.  We got to see her new apartment and meet Sandy's parents.  They were great people and we enjoyed getting to know them. Christina took us on a tour of her base and was I ever impressed.  She works on the helicopters (or "birds" in Navy speak) in a large hangar which opens out to the ocean.  I am in awe of what she does and how she does it.  Way to go sister!!

Outside of Christina's squadron hangar
on the Norfolk Naval Base.

This is one of the helicopters that Christina works on. 

Christina and Sandy in front of her squadron's "show bird." 

Standing on the middle deck of the USS Bataan Aircraft Carrier with
the USS George H.W. Bush carrier in the background.  These ships
are huge!!  Walked up steep ramps to each deck level.  Sandy
will deploy on this vessel in the coming weeks.

Sunday, October 13, 2013

Off the grid and in the air...

What I've been up to lately:

1.  I've learned computers really aren't that fun without an internet connection.  It's true.  They just sit there about as exciting as a bag of rocks!  Being off the grid for almost three weeks, thanks to some heavy-duty problems with our neighborhood Century Link box, made me nostalgic for the typewriter of my youth.  At least with my Olympia I got the satisfaction of scrolling in the paper, listening to the sounds of pecks, dings, and carriage returns, and unjamming the crisscrossed keys locked up from typing too fast.

2.  Finished a month of another round of IV's this Tuesday.  So glad to be free of these little bulbous guys.  Started out with Ceftaz, Merrem, and Linazolid.  After several of days on the Linazolid, I woke up with my world on the move again.  If I dipped  my head at all, I became dizzy and laying on my left side brought about the same results.  Honestly, this balance/dizzy problem is for the birds.  So frustrating.  Got a week of that drug under my belt when we decided to stop it so the dizziness would ease.  Then at three weeks when I should have been finished, I still had a productive cough so we added Vancomycin on a very slow drip to reduce my bronchospasms.  Adding that for an additional week made the difference and I felt like I improved enough to stop all the meds finally.  Hopefully this clean out will last longer...I know I've said that the last two times but I really mean it this time, body!!

3.  Got flights booked for Tuesday morning to North Carolina for another check-up at Duke.  Besides the usual xrays, bloodwork, and pulmonary function test, I will be seeing a new pulmonary doctor, a new dietitian, my transplant coordinator, and a new psych doctor.   My medical day begins at 7:40 a.m. and my last appointment is scheduled for 2:00 p.m.  Hopefully everyone stays on time and I get outta there before dark  Wednesday will be a long doctor-filled day no matter what happens.  Not sure what they will say this time, just trying not to stress about it too much.

4.  I taught a group of Relief Society ladies how to index for  Dusted off my rusty Power Point skills and put together a presentation to show how fun and easy indexing historical documents can be.  Indexing genealogical records gives researchers a way to find their family information easily without having to scroll through rolls and rolls of microfilm just browsing images hoping to find one that may be related.  It's a great volunteer opportunity which helps others and who knows, maybe someone else will make something you've been searching for available as well!

Sunday, September 22, 2013

And the rain rain rain came down down down...

The sign as you cross from Wyoming into our water-logged state.
A Colorado shout-out to Pooh Corner--make the rain stop already!  The devastation water can create is truly amazing.  There are washed out roads, stranded people, and cut-off communities.  For awhile the fence at the side of our house was even growing moss.  This is not good when you are living in a semi-arid place. Jungle, moss.  Fort Collins, no moss!

Thankfully the worst of it has stopped this week but we are still getting evening showers and afternoon sprinkles from time to time. Volunteers are mobilizing to help shovel out mud and clean up homes and businesses.  I wish I could don a Helping Hands yellow vest and contribute but since I can barely clean my own house and breathe, I wouldn't be much help. However, seeing people come together and serve inspires me.

Over 200 miles of county roads are damaged or destroyed.  This
is part of the highway to Estes Park.  City roads and bridges
are in even worse shape.
Fires from too little moisture last year and now floods from getting a year's worth of rain in a few days this year. It is not often you hear "rain in Biblical proportions" being used to describe the weather, but when the ark fits...
Tractor in a field near Greeley.
A submerged subdivision in Longmont.

Monday, September 2, 2013

Of breathing, bashes, and blessings...

Breathing:   I'm about six weeks out from my last round of IV's and I'm already wondering if I can make it to my Oct 16th Duke appointment without another hit of medicine.  Truly, since my embolizations, I am just not breathing right.  My exercising is a struggle and needing to boost my oxygen up to 4 liters when walking just makes me angry.  It feels like I can't expand my lungs big enough to get a full breath.  Then when I cough,especially at night, the blood pounds in my ears, my body feels all sorts of weird sensations and as I struggle, I am working to keep feelings of panic at bay.  Will I ever be able to catch my breath?  Will the bleeding start up?  Once I get scared, it's harder to breathe and well, you can see how fun that vicious cycle becomes.  Needless to say, going to bed is no longer something I look forward to.  I stay up late just to delay the inevitable coughing fits that interrupt my slumber.  Life with cf is tough--I try to stay positive but it is hard work...some days more than others.

Bashes:  We took a trip to Idaho to see the family, celebrate the fair, and attend my 30th class reunion.  Of course I always look forward to being with those I love and the county fair gives us the perfect excuse to get together.  My nieces and nephews are just fun people to be around and I treasure the time I get to spend with them.

Josh flying down the hill at Steadman's Ranch.   A farmer
turned a field into a slide-at-your-own-risk attraction.

You can even see the center pivot irrigation in Krista's background.

Jess and Noah take a run while Celeste waits behind.  A fun
way to spend a sunny Idaho day.
One afternoon we took the boat down to the river to pull the kids around on the tube.  The other bank dwellers and I were waiting for the group to return and trade off since not everyone could go at the same time.  We were starting to wonder what was taking them so long to come back into view.  Finally, the boat came around the corner and up to the dock.  You could tell the riders were shaken up.  Noah, my 15 year old nephew, was sitting in the back seat and didn't notice the tow rope around his foot.  When the boat started to accelerate, the rope wrapped around his leg and flipped him backwards over the motor and into the water.  Thankfully, Rheid looked back just as it happened and cut the motor immediately.  Besides being scared to death, his leg was bruised with a nasty looking rope burn around the knee.  So grateful a fun day on the river didn't turn into a tragedy; Noah's safety was a tender mercy.

Rheid whips around the boat so the riders fly over the wake.
The parade and fair were the same as always--which is why it is so great.  Tradition--there should be a fiddler on top of the roof grandstand.  We went to the rodeo one night but the arena was so dusty from the heat that I decided to leave half way through.  (Coughed up blood for the next two nights so not sure if that contributed or not.)  Watching the cattle sorting on another afternoon was a lot of fun as well.

Cowboys must sort the ten cows into the adjacent pen
in numerical order with a minute time limit.  Cows
are not known for their intelligence...just sayin.
I was excited yet hesitant to attend my 30th (gasp) class reunion.  Ten years ago I was one of the people they thought had changed the least and now here I am toting oxygen, feeling 20 years older.  I was disappointed that so many of the group I hung out with didn't come this time. It would have been great to catch up with them again.  Still it was interesting to hear classmates share their life experiences and realize how far we've come.

Blessings:  Last Saturday, August 24th, the groundbreaking ceremony was held for the Fort Collins Colorado LDS temple.  A limited number of people were allowed to attend on-site so I was able to watch the proceedings at my local church house.  It was a beautiful, warm summer morning.  Elder Rasband of the Seventy presided over the groundbreaking.  I can hardly wait for 2015 when the blessing of attending will be so close.  It was a happy day.

The 15 acre field where the temple will be
constructed.  Porta-potties are the only remnant
of the earlier gathering.
Our good friends (and they happen to be our neighbors) received some scary news--their newly married son, Justin, was diagnosed with cancer.  Doctors found a large tumor in his chest which had begun to cause him pain.  He just finished his first round of chemo and has tolerated the treatment fairly well.  Through a series of mini miracles so far, their family hopes to be blessed with a cure for Justin.  If you would like to help the newlyweds defray their medical costs, here is a way you can help bless them as well. Just click on the link below.

Sunday, August 4, 2013

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 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.

Friday, June 28, 2013

I can see clearly now...

Hallelujah!!!  The glasses are 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.   

Friday, May 31, 2013

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! 

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' 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!

Monday, May 13, 2013

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.

Friday, May 3, 2013

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.

Sunday, April 28, 2013

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. 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.


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.

Wednesday, March 27, 2013

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.

Friday, March 1, 2013

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.

Friday, February 8, 2013

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. :)

Friday, January 4, 2013

The mostly wonderful time of the year...

December didn't quite go as planned.  Ended up spending 4 days in the hospital trying to get my stomach and the drugs to play along well together. Tests, a limited diet, and new tummy meds were on the agenda.  We never figured out exactly what it was, either gastritis, gallstones, or an ulcer.  All I know was I felt truly thankful when things calmed down and I could return home.  As the three weeks of IV's slid into a fourth week due to a very resistant bug, I found myself two days before Christmas with very little purchased.  I kept telling myself I'd take my IV's on the road and do some shopping tomorrow but I just never felt up to it when the next day rolled around.  I've never been so woefully unprepared for the holidays.  But somehow it all came together and Christmas Eve I wrapped my newly purchased bounty and ran my final IV.  I counted and since I ran ten infusions a day, my final one became #300.  Crazy!  No wonder it felt like I didn't accomplish much the entire month.

In the Navy now!
It's really happening...
On 12-12-12 Christina enlisted in the Navy!  We drove down to Denver to see her sworn in.  We hustled to get there by 8:30 a.m. (didn't want to miss it) and the ceremony finally started at nearly 11:45.  So far I have learned the Navy is a hurry-up-and-wait proposition.  About 30 others were sworn in alongside Christina.  When she raised her had to take the oath, I had goosebumps going up my neck.  I am so proud of her decision!  The navy mailed back her "civilian" clothes and backpack--she only gets what the Navy has provided her.  We have received two letters so far and she sounds great.  It hasn't been easy but her spirits are good.

We survived the Mayan calendar scare on the 21st completely unscathed.  Most disappointing apocalypse ever!

Santa brings a Nuggets jersey.
Next came a white, relaxing Christmas--only the three of us since Christina was away at bootcamp.  We didn't open presents till after 8:00 a.m.  Rheid and I crept upstairs and knocked on Josh's door telling him we couldn't sleep and could we pleeeeeze get up now and see what Santa brought!  Usually that was his modus operandi at o'dark thirty...and that is after we nearly had to drug him so he could fall asleep. I made out like a bandit with electronic gadgets while Rheid scored with new suits.  Santa brought Josh an IOU for a rifle (thanks to the horrible school shooting and Pres. Obama's posturing) the gun lines were 30+ deep and background checks were taking up to 5 days instead of a couple hours) and some outdoor gear.

Christmas Eve nativity puppet show with the Larson's.

Since it has barely snowed all winter, it only makes sense it would start up just as we needed to hit the road.  On our departure day,Wednesday the 26th, I checked my new computer and Wyoming was a solid mass of yellow and orange warnings.  This is when I began to work myself up!  A life-threatening drive on icy roads with blowing snow is not my idea of a good time.  The problem:  the next day was projected to be even worse.  With my nephew Steve's wedding on Friday, we had to make our escape using the much longer and still snowy Colorado route over Vail Pass.  When we got about sixty miles out of Spanish Fork, Utah, the roads were so bad (not a snowplow in sight, thank you UDOT) I started chanting to myself, "I love Steven.  I love Steven.  I really love Steven!"  Then when we found out the roads would be an issue all the way to our Heber City destination, we exercised caution and checked into a hotel room in SF instead.  Our nerves were shot and the thought of driving yet another icy canyon made me want to curl up in a fetal position.

Thursday morning I found out I had not only entered Utah but Dante's Inferno of Germs as well--somehow I must of missed the sign. Numerous family members were in various stages of mucus misery.  Great!  I tried to stay away from the worst offenders as much as possible.  I washed my hands frequently.  I prayed.  Both of my parents, Rheid's dad, two nephews, three nieces, and a brother-in-law all came down with this nasty cold.  And by New Year's Day when we headed home, I could add Rheid to the list of the afflicted.  (He's been in bed all day and I quarantined myself on the couch last night.)  But despite it all, it was wonderful to be able to: spend time with family; see Steven and his beautiful bride, Tiffanie, get married in the Salt Lake Temple; watch the newly-released Les Mis with our virus-segregated family group of 13 (fabulous movie); attend the baptism of a nephew's darling little girl which allowed me to see family members I haven't seen in 13 years; and celebrate the beginning of 2013!

Newlyweds finally emerge from the temple!
Frozen cousins are happy cousins.
So grateful to be a part of this magical day.

Late night in Heber City with Rheid's parents.
First smooch of 2013--Happy New Year!