49 but who's counting...

Celebrated the big "49" in a unique way. Rheid took the day off to accompany me to the birthday destination of my choice. I chose the zoo. So just before heading off, I went online to the Denver Zoo site to see if there were any special programs or discounts for the day. To my dismay there was nothing exciting going on that day because it was CLOSED. What??!! The zoo unavailable on the best day of the summer--unthinkable! I was so disappointed since I'd looked forward to it all week. Time to think of a Plan B.

Well B in this case turned out to be for butterfly. I had heard of the Butterfly Pavilion before but really didn't know what it was all about or what to expect. I checked its website and saw they charged only $1.00 admission if it is your birthday. SCORE! I took that as a sign so off we went to Westminster, a suburb of Denver, instead.

Turns out besides butterflies, they house lots of different invertebrate creatures (animals without backbones) which make up 97% of all animal species on the planet. Who knew? We saw giant millipedes, scorpions, huge cockroaches,walking sticks, jellyfish, starfish, horseshoe crabs, sea anemones, etc. But the biggest non-butterfly hit housed in the "Crawl-a-See-Em"  was Rosie the tarantula.

Earning my "I Held Rosie" sticker which I wore with pride!

Rosie felt amazingly light and soft.

First time ever holding a tarantula.

Told Rheid he had to try this too.

Then it was on to the main attraction, the butterflies. They were housed in a large rain forest-type pavilion (interpretation: hot and humid) which was full of all kinds of flowering plants. Gorgeous. Oh and the butterflies! They are flying all around you. At any one time, there are about 1,600 butterflies of various species living there. 

A variety of swallowtail.

This one isn't specifically identified in the brochure but he was willing
to hold still so I liked him a lot!

It was so amazing and they were all so beautiful I wanted to capture them all digitally. Unfortunately, being a bad shaker combined with technical difficulties trying to work my phone (wish I had taken my camera instead) and the constant moving of the butterflies, not many of my photos turned out well. There were also large window displays of the "nursery" which featured many kinds of chrysalis's waiting to hatch. My favorite looked like they had been dipped in solid gold, which is supposed to scream "bitter" to any potential ingest-er.

There were butterflies large and small with lots of different colors and markings.  My favorite were the large blues, owls, and the Paper Kites. The Paper Kites were a very large white and black species that has a slow, gentle flight behavior like paper floating in air. A maze ing! They stayed up higher so they were hard to photograph.

A closed Tawny Owl Butterfly.

Blue Morpho Butterfly

We stayed in the pavilion a couple hours and were able to see a release of the newly hatched butterflies taking their first flight. Super neat. 

Resting and waiting for the release.

We ended my birthday with a family dinner at The Hibachi Grill. Our chef had us all cracking up with his corny jokes and watching his cooking antics. Great food and even better company.

I am so blessed to celebrate yet another birthday and now its 50 or bust! 

Check it out...

Thought I would share a checklist of happenings since I last checked in on my blog.

1.  Biggest accomplishment--finishing 75 days of IV antibiotics!  Whew, what a marathon but so far it has been worth it. At clinic on 2 June I blew a 31%!!!  Woot woot!!! (Yes, excessive exclamation points are needed here!)  Finished my last one that night and now am only on the oral Cipro.

2.  Best visitors--my parents. They came all the way from Idaho to visit the last week of April. Mom and I worked on genealogy while Dad helped Rheid create a home-made teleprompter.  It's scary what two "engineering-type" minds can come up with.  It turned out amazing.  We sampled local cuisine, watched Josh play some soccer, looked for antique car parts for Dad, cheered on the Avalanche in the Stanley Cup playoffs, and  hung out.  I loved having them just wish the dang wind would have cooperated a bit better--it blew like crazy the entire time they were here.

Lunch at Doug's Diner

3.  First game--the Colorado Rapids. Josh decided to become a season ticket holder this year so he treated us to a night out at Dick's Sporting Goods Park. We squeaked in a night of good weather for early May; it had been cold and rainy that week. Then last Thursday we used our free Rockies tickets. Josh brought along his friend, Mindy, and the four of us got there early enough to grab hamburgers at the new Rooftop patio deck. It was a beautiful night for baseball even though the Rocks got pummeled in the ninth inning. A seventh inning rally, where we witnessed our first in-the-park home run, gave us hope but it was not to be.

4.  Dirtiest deed--my garden.  I planted the garden late this year because of the cold rainy/windy weather. The little plants are popping right up now.  However, we are experiencing a bunny population explosion this spring and I have seen evidence they are finding my plants tasty. Where are the foxes when you need them? I love seeing the bunnies in the yard--just not in my garden!

5.  Worst news--Christina's car accident.  She was hit from behind late at night while out with friends.  Luckily she was fine but her poor car isn't. Haggling with a non-helpful Progressive insurance agent (Help Flo!) and paying her five hundred dollar deductible for the $5,000 worth of damage to her Mazda has made her very frustrated. The other insurance company refuses to be liable--State Farm, that is not very neighborly!

6.  Most anticipated--starting of construction. Finally tractors, graters, and cement trucks have invaded the field where the Fort Collins LDS Temple will be built. I have waited impatiently for two years since the announcement was made for work to begin.  After the groundbreaking in the Fall, I assumed things would start moving along but alas, my hopes were dashed and more waiting was required. It will be fun to watch the progress now.

Blood moon karma...

Blood Moon 2014

Don't you just hate it when you anticipate something all day long and then when it is finally time for the event, you totally blitz it. That was me yesterday with the Blood Moon eclipse.  To add insult to injury, I lay in bed with raging insomnia during the 2 1/2 hours of peak watching time. Ugh.

Rewind to earlier in the day.  I went to Denver for my post hospital doctor's appointment.  I thought it would be a quick in and out but unfortunately I got the full CF team treatment--dietitian (yes, I know which foods are rich in iron and yes, I am fully aware of good protein sources as well and I consciously eat them; it just doesn't seem to make a difference to my blood!); social worker (yes, I feel supported and I know I can call your office any time with concerns I have with my care.)  Maybe at this point, the careful reader has noticed a wee bit of irritation with quite normal and average things...thank you steroids for making me irrationally annoyed.

As my appointment progressed, I was able to chill a bit thanks to the reports I got.  My pft's were back up to 29% and my lungs sounded good under the stethoscope. Finally, a bit of good news for a change! Dr. S was very encouraged that our new regimen actually gave better results than we thought at discharge. I believe it was getting off the Vancomycin, which tends to seize up my airways, which allowed the progress to be recognized.

We also discussed my treatment plan going forward.  I am going to stay on my two IV meds and be desensitized to Cipro on Thursday.If I tolerate that well, then we will take away an IV med the following week and the last med a week after that. Then I will be on oral Cipro for the total of a month before stopping it too. At that point we will see if my body is able to maintain a reasonable level of stability (longer than the current three weeks) before needing additional intervention.

Rheid and I were both so happy to get a good report and have a plan.  We talked about maybe taking a trip to visit family or something fun while I was feeling so good.  We thought ahead.  We dared to think we were due a break.

Fast forward to later that night.  After my restless legs were starting to settle down and sleep felt like it was within my grasp, I coughed. Not hard. One small throat clearing cough and I was on my way to dreamland. Then the blood came. Then the sleep fled. Then the plans stopped. Then I felt defeated. Not the blood I had anticipated seeing all day--no matter how much I wished it was. I can only look to the heavens for strength to look forward.

March madness...

February--entire Olympic games--in hospital.  March--entire NCAA Basketball tournament--in hospital. Does anyone see a pattern here? Since I am leaving the hospital tomorrow after a 3 week stay, I feel confident The Masters can go forward on schedule this weekend without my hospital assist. Hoping to make it past the Kentucky Derby and aiming for the World Cup!

This hospitalization began with a heart cath.  Duke wanted me to have one to check for pulmonary hypertension.  If the pressure was found to be high, I had a one way ticket punched to Duke and lung transplant. The procedure went well and found no significant pressure change from when the cath was first done during evaluation week there two years ago.  Good news for my lungs, bad news for knowing any more about when to go forward with transplant.

Being sick again so soon is a step towards transplant however. So in this hospitalization, Dr. S decided we needed to try medication that my Pseudomonas infection hadn't seen in a long time. (Cue scary music here.)  It was time for a trip to the ICU to be desensitized to Zosyn, a penicillin drug. Fortunately, the desensitization went well and 18 hours later I was back on my floor.  Unfortunately, the Zosyn doesn't seem to be the silver bullet we were hoping for--just average. Bummer.  To keep my positive trend going after leaving the hospital, I am going home on IV's; I'm not sure how long I'll be taking them.

I did have an experience this admission where I was reminded of the power of prayer. After a night of very little sleep, a nurse came in at 6 a.m. to get a blood test. Because these draws are done through my port, I usually try to go back to sleep while the nurse fusses with it.  But this time she couldn't get the port to draw back blood.  After what seemed like an inordinate time of fussing, she finally announces that the port will now not even push fluids.  Fast forward to a total of 4 re-accesses and 2 nurses and my port is pronounced  DOA.  At 8 a.m. Interventional Radiology (IR) is notified that my port needs to be evaluated.  If they can't get it to work or if they see damage, then the port would have to be removed and another surgically implanted. I was very concerned because no heparin had been able to go in to avoid clotting. I waited all morning and afternoon for IR to come get me and finally at 4:30 they called and said I would not be seen till tomorrow.  Not a happy camper with the IR staff.  I'd spent all day waiting and getting no medication.  So after 3 attempts, the nurse started a peripheral iv in my arm.

One main concern I had was that at Duke they remove all ports at transplant. So I didn't want to get a new port just to turn around and have it removed again. That's a bit of trauma I would rather avoid.

My fluoroscope had a large screen on
the side so I could see what was
happening.

At 11:00 the next morning I went down to IR with a prayer in my heart.  The head technician accessed my port and it looked good on the fluoroscopic screen. But when she went to flush it, nothing but pressure--nothing going in and nothing going out.  There was no way to get the contrast into the line to see what was wrong let alone get the clot-busting TPA in where it needed to be. When she said it looked like my port was a goner, my heart sank.  But then she asked the others if Dr. ? was available. They grabbed him from next door. He thought the needle looked like it was in the right place as well but he said he would give it one last try.  So he put in yet another huber needle and this time with his strength, he was able to push a small bit and get a few drops of blood to return.  He got a little contrast in and they could see the end of the catheter was blocked. My hope was that enough TPA could get in to make a difference, only time would tell.  I had two hours to wait and hope and pray.

As I was leaving the procedure room to go back to the post op waiting area, the technician said, "If this works, you should go to Vegas because you will be one lucky girl."  So I sat and sat and sat for almost 4 hours before they could get me back to the procedure room to check if my port was viable now or not. When she attached the flush she said, "Cross your fingers."  As the contrast flowed in, I could see the liquid move on the fluoroscopic screen.  I was so thrilled and so were the techs who had been helping me.  "Wow, you really are lucky!" the head technician said.  I turned to her with tears pooling in my eyes and said, "Luck had nothing to do with it--I was blessed."  She smiled and agreed with me.  What a tender mercy to have this sixteen year old port continue to function.

It's been a long three weeks but I've made it. So as I look forward to getting home tomorrow, I need to remember the blessings and not focus on the madness this disease creates.

On a winning track...

Here I sit on a Monday afternoon at the Denver Bed and Breakfast watching the Men's Aerials and wondering with all the wild genes I've inherited, why I didn't get at least some "wild" in my DNA structure.

These winter Olympians are fearless!  Due to my adrenaline-phobic self, I've determined my only shot at glory, should I be so inclined, would involve stones sliding down an alley of ice with me wielding a Swiffer and sweeping like a possessed housekeeper. And honestly, I've watched about a combined hour of curling and I still can't figure out what the point strategy is.

But one thing is for certain, being able to watch these Sochi games has helped pass the time during my latest hospital admission.  I came in on the 4th following three straight nights of hemoptysis and shortness of breath.  Waiting another week to make it to my Duke appointment became too much for me to deal with.  I felt like if I made if successfully to Durham, I wasn't sure if I would have to be admitted there.  What a mess that would be.

Coming in turned out to be a good decision.  My pft's were a non-stellar 22% and an x-ray revealed an area of pneumonia in my left lung.  No wonder I was feeling so crummy.  But now after two weeks on colistin, linezolid, merropenem, and ceftaz, life is feeling much better.  We rescheduled Duke for March 10th and will see what happens there.  And I hope to be home watching the closing ceremonies from the comfort of my couch.  Sounds like a winner to me.

Editorial note:  Although the Super Bowl turned out to be a super bust, I still love my Broncos and my Peyton shirt with its damaged mojo is washed and ready for next year.  We will live to win again.