It was a dark and stormy night...

June 24th The Storm: It was a dark and stormy night (cue ominous music here) when around 11:00 p.m. the distant thunder boomed. Our area had been experiencing nightly lightening storms so we didn't give the building tempest much thought. Little did we know that thanks to a slow moving front, we were about to endure an hour onslaught of intense rain and damaging hail.

Once the rain reached flash-flood proportions, we all gathered around the sliding glass door to gawk and join our "WOW's" in chorus.  It was truly phenomenal.  Next the hail began to grow more plentiful and disturbingly more chubby. There were more "WOW's" as the roar on the roof increased in volume and we became concerned our new windows might be in danger of breaking.

After the deluge had been going for what seemed a very long time, our thoughts turned to the basement. Yep, water was filling up the window wells 3+ feet deep. Not only was water seeping through three seals but we had H2O squirting like a water fountain from the worst offending window. While Rheid and Josh donned rain gear and bailed out the submerging window wells, Josh's friend Nathan, who has been living with us for the past three weeks, toted one rubbermaid storage container full of water after another up the basement stairs. Since the storm was still raging, all I could do was pray no one got struck by lightening. It was about 2 a.m. before we were able to head off to bed.

Stepped out on the front porch to take this picture that night by our
front door, then a bolt of lightening sent me scurrying back in!

We knew from the ferocity of the storm that our trees, shrubs, flowers and garden were shredded but it was not until the next morning that we could survey the damage.

Because of the icy ground, when the sun started to warm the air,
a mist rose up making a spooky fog. This is the view looking
out our sliding glass door. Poor tree lost many leaves and our
apple tree around the corner is hammered.

Two hail drifts appeared on our front sidewalk over a foot deep.
The ice was so compacted that it lasted over two days in 90+
degree weather and full afternoon sun.

South end of my garden box that used to be home to thriving
green beans and onions--now just bean stalks. The onions, though
flattened, are now starting to look like we will get about 80% of
them to maturity.

What was once a very fine tomato plant is now a tall stick with
a flattened zucchini plant to its left--neither one survived. Two
tomatoes on the other side of the garden may pull through;
they still had some leaves left towards the bottom.

No this is not a lake. This is the baseball diamond and field adjacent
to our neighborhood elementary school. Crazy.

The Aftermath: Garden needed to be replanted. But with it being so far into the growing season already, I doubt we will get much more than onions to harvest this year. Our shrubs and tree leaves looked like they have been through a war--leaf shrapnel plastered all the sidewalks, lawns, and gutters.
Our apple tree lost 2/3rds of its apples and what's left are covered in pock marks.  Curses, we had even remembered to spray the tree for worms early this spring!

Our roof, like those of the entire neighborhood is a total loss. We were declared a catastrophic area by the insurance companies so adjusters were out in force inspecting the damage. Unfortunately, roofers and disaster specialists of every kind came out in force as well. Lots of annoying phone calls and people at the door wanting to give us free estimates to fix our hail damage.

But luckily we are in Good Hands and they will replace our roof and damaged window frames (yes, the new ones we put in only 5 months ago and are still paying on.)  There is also touch-up painting that will need to be done. We will be out our deductible but it could be worse. Hopefully our rates won't skyrocket due to all the money insurers are paying out in our area. When you enter the neighborhood now, half the houses are sporting lawn signs. It looks like Realtor's Gone Wild! Only at closer inspection, the signs are all different roofing companies who mark their territory like dogs at a fire hydrant.

Allstate Amy, an insurance adjuster from Texas, surveys the damage.

The hailstorm reminded us that the safety of our family and neighbors is really what matters most. Because after the dark and stormy night has past, things can always be fixed or replaced.

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.