Thursday, December 11, 2014

A look back at Fall...

I just took a gander at the past four years of December posts and I noticed two very distinct themes: not feeling good for the holidays and being woefully unprepared for it all. Well, so far this year continues in that grand tradition. Instead of going into the hospital last week however, I opted to try home IV's. I've felt very nauseous and that has definitely brought out the Grinch in me. Along with tummy troubles, my ol' nemesis, anxiety, has reared it's ugly head. It's pretty darn discouraging I must say. But hopefully I can use my cognitive tools and cut this unwelcome holiday visitor's stay short.

The previous two months in pictures:

Maggie and Max were the cutest of our trick-or-treaters. With
warm weather, we were ready for swarms of kids but alas, our
neighborhood is not as young as it used to be and we only got
a handful of treat seekers.

Our roofers came during our few days of sub-zero weather. Of course,
it has been our only snow so far. I felt bad for them working in
the bitter cold. Our hail-damaged roof looks marvelous now.

Our return to warmer weather allowed Josh and Rheid
to trim our front tree. We've babied it along from
fire blight for 3 years and it was now time for
drastic measures.

About half way done and our beautiful tree is
beginning to look rather spooky. A sad but necessary
attempt to save its life.

The 19th of November wasn't Josh's finest day. His Ford Focus
was totaled so he spent Thanksgiving weekend looking
for new wheels. I was so grateful he was safe.

There may have only been three of us but we had a full
spread of Thanksgiving vittles. After eating leftovers for
a week, we were done with turkey and all the trimmings!

Sunday, September 28, 2014

Three weeks of change...

Postcard from my new digs - Saint Joseph Hospital

Change is hard. Hard. Hard. Hard. Thirteen years and numerous admissions (twenty since the beginning of 2008) at the University of Colorado Hospital came to an end this month. National Jewish Hospital decided to change their partnership/affiliation to Exempla Saint Joseph Hospital, lovingly known to the locals as St. Joes.

Just finding this place in downtown Denver takes effort but finding my room, #4410, proved daunting. Stranded on the 4th floor in the hospital proper with suitcase in tow on August 28th, nothing looked right. Finally we happened upon a doctor, who not really knowing where we belonged either, called for help. Armed with directions, she then turned us around and personally escorted us across the elevated walkway to a medical building where the new cystic fibrosis unit resides. Yep, I am residing in an un-hospital. Saint Joseph is building a new facility which is scheduled to open in December of this year which I am informed will be incredible. All I can say better be!

(Editors Note: I am now writing/blogging this over a week after being discharged on the 18th of September. Due to internet issues--a connection that wouldn't last longer than a few minutes before you were dropped and made to resign in again as a guest--I finally gave up on finishing this post before my computer became a flying projectile of frustration! It took me 3 hours just to get to this point, sheesh.)
Notice the 4th floor glass walkway between 
the hospital and where I was tucked away.
The circular towers were built in the early 
1960's and this whole building will come 
down once the new one is completed.
Old outpatient orthopaedic surgery rooms in 
this building house the temporary CF unit.
The original Sisters of Charity of Leavenworth/Saint Joseph
Hospital located just to the north is architecturally
beautiful and is a protected historical site. This picture 
isn't doing it justice. 
Things I liked about my new bed and breakfast:

1. The nurses were fabulous and eager to make the transition as easy as possible. They didn't have CNA's so all your needs were met by the nurse. I kinda liked that.

2. Respiratory therapists (RT's)were efficient and made notes for each other so I didn't have to repeat myself every shift to explain how I wanted my treatments to flow. Another plus was the RT's all seemed very "normal." From my past UCH experience, I thought being a little off-kilter was a prerequisite for being hired as an RT. Thankfully, not so at St. Joes.

3. Mini fridge in my room was the bomb. At first I didn't think I would really use it. But Rheid made me a peach pie and brought other snacks that made life more yummy. Plus, if my tray came while something else was going on, I could put my milk or other cold stuff in there and not stress. After all, cold milk on your cereal is a wonderful thing.

4. I liked how friendly everyone seemed to be. From radiologists, to transport workers, to housekeeping.

5. Nice large room with wood floor, exercise bicycle, comfortable bed, and darker room made for better sleeping.

Things which deemed my new bed and breakfast undesirable:

1. I am unable to express just how poor the meals were at St. Joe's.They put the "hospital" in hospital food. When a friend of mine found out I was at St. Joe's (her father had been an inmate patient there for an extended stay), she surprised me and had Chinese food delivered to my room. Wasn't that sweet! It tasted sooooo good. I only ate half so I knew I'd have something palatable to eat the next day. (Mini fridge to the rescue.) Rheid made me two wonderful Sunday dinners and brought in Noodles & Co to help my tortured taste buds. (He tried the food once and wasn't too keen on sampling any more.)

2. Too many people on a computer system not built to handle that much traffic is a recipe for cyber fury. Honestly, there were times when it felt I spent more time trying to get logged into the system than actually using the internet. I found evenings were a little better when there was less demand on the network. I usually spend a fair amount of time doing indexing/genealogy but after a few batches, I gave that up. It was just too darn frustrating. So I decided to try out the origami kit I've brought to several inpatient stays but never got around to doing much with. This is my result.

Just call me the Origami Master. I can now fold jumping frogs,
simple swans, flapping birds, and cranes without peeking for
help. I also made a kimono, rabbit, and a ball.
3. There was very limited space to walk for exercise and this building was full of doors which you could get out of but not re-enter. Consequently I spent more time in my room. I really noticed my conditioning had decreased once I got home and tried to walk up the stairs. Yikes, you can sure lose muscle strength fast. I know that is why they stress walking so heavily pre-transplant.

All in all things went well with just a couple detours: needed a gastro fluoroscopy to roto-rooter my slow bowels, and needed TPA to clear a blocked port caused by nurse's error. I survived my 3 weeks of change.

Dr. Palmer--one of the
tx team big wigs.
DUKE UPDATE:  Two days after discharge from the hospital, I took my scheduled trip to Duke to meet with the transplant team. This time I had an appointment with Dr. Palmer, pulmonologist. Now all the lung doctors have met with me and know who I am. He was great and answered several questions I had about being an older CFer and transplant outcomes. The team will meet on my case Tuesday the 20th. I'm expecting they will say to hold course and keep going along as I have been. Sigh. It's hard to know what I want them to say anymore. When I feel awful before going into the hospital, I feel like I am ready for transplant but then once I am fixed, I want to wait longer. I am a transplant schizophrenic!

Saturday, September 6, 2014

My summer getaway...

With the way this little body is behaving itself these days, it has become difficult to schedule any kind of vacation with much success.  So I was thrilled when getting on two oral antibiotics made me feel confident enough to try a short trip to Utah to visit family--my only summer getaway.

In order to keep my So-you-made-a-plan-yeah-right Gremlin from rearing it's nasty head and spoiling my trip, we decided to keep it on the down low until the morning we left town. Letting people know too far in advance that I am coming just gives fate a chance to jinx it all.

We called Rheid's folks Friday morning to let them know that we were coming that night and found out we were going to serendipitous-ly be a part of a Lungs 4 Sherri garage sale that weekend. My sweet in-laws were doing a fundraiser for me! Because of their hard work, they added almost $500 to my transplant fund. I am so grateful for their support.

A bargain hunter's view of the front lawn. Mom Schloss is hanging out in the
garage managing the money and staying out of the heat.
One reason I wanted to make the trip was to finally have a chance to meet my new nephew-in-law. My sweet niece got married almost a year ago and I've managed to flub up every single chance to meet him previously.  Look at what a cute couple they are...I totally approve!

Krista and Logan stop by before they jump back in their 
moving van on their way to new adventures in Logan, Utah.

Now the main reason I wanted to come to Utah was to see this guy, Elder Kevin Weatherford. I managed to miss his missionary farewell so I sure wanted to be a part of his return. His mission was served in the Missouri Independence mission for 18 months and in the India Bangalore mission for the final 6 months. Visa complications kept him stateside for so long, he worried he would never see the land where he was initially called. It was fun to hear about all the challenges he had adjusting to the Indian culture and see the unique souvenirs he brought home.

Elder Weatherford and his excited-to-have-him-home parents.
Beautiful Butcher girls after church.

Noah bravely models the native dhoti-a
cotton wrap that creates a type of pant.
Think Mogli attire here.

Seeing the back of the dhoti
made us all bust out laughing.

Unfortunately my phone camera didn't do
these pictures justice but the moment was
too fun not to share, Love these boys!
Just love my family and am so blessed to be with them, if only for a summer weekend.

Tuesday, August 26, 2014

28 years in the making...

My life's greatest accomplishment turned 28 at the end of July. He has a tender heart, a remarkable sense of humor, a passion for sports, and an amazing memory. Josh thinks deep thoughts, watches out for others, enjoys many music genres, and is a loyal friend. I'm blessed to be his momma!

Sunday, August 24, 2014

I must be nuts...

Nut Smoothie before picture: layers of sprouted pumpkin seeds,
sesame seeds, cashew butter, hemp seeds, hemp milk, brown rice
syrup, sachi inchi seeds, organic cocoa powder, and a dash of nutmeg. 

14 Jul 2012--a day that will live on in infamy. My dear husband was doing some video work for a local nutritionist. Hearing about my health challenges, she wanted to meet me for a consultation. I had already begun consuming a heaping tablespoon of blackstrap molasses daily for an iron boost at her recommendation. At our meeting she said I could benefit from drinking a daily nut smoothie.

For long time followers of my blog I know you are screaming at your screens begging me not to try it because you know how well my other "I-will-be-so-healthy-it's-sickening" drink experiments have turned out. Yeah, next time yell louder because this Ninja blender of goodness became lunch!

Once I got past the consistency and slightly funky taste, it really wasn't bad. So that night I soaked more seeds preparing to do my body more good the next day. And that's exactly what I did. I could feel nutrients coursing through every cell. Well, that is until that evening when all that goodness came coursing right through...and not in a good way. Stomach cramps and diarrhea wracked my system.

My bowels felt like I had drunk the devil's drink of choice. This lovely development continued in waves for the next couple of days till finally the cramping subsided leaving me with the runs for over two weeks. My abdomen felt like it had been through 9 rounds with a meat tenderizing mallet. Oh, just writing about this makes my stomach start having sympathy pains.

My battered bowels finally began feeling better but my brain must have left the building. I decided to try again thinking I might have caught a touch of something that just happened to coincide with my ingestion of the nut smoothies. Besides I had invested quite a bit of money just to purchase all the ingredients (who knew hemp seed cost a small fortune--wow) and I didn't want to waste them.

They say insanity is doing the same thing and expecting a different outcome. I am insane as they come I guess. This time the smoothie madness hit later that afternoon and diarrhea was my companion for the next ten days or so. Lesson learned.

So the next time I hear of a nutrition-packed drink that will change my life, I plan to run--so my bowels don't have to.

Thursday, July 10, 2014

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.

Sunday, June 29, 2014

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! 

Tuesday, June 10, 2014

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.

Tuesday, April 15, 2014

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.

Wednesday, April 9, 2014

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
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.

Monday, February 17, 2014

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.

Saturday, January 25, 2014

I've got Bronco fever...

Time on my hands = a new blog look.  A week ago last Friday I started running low grade fevers and they have been basically non-stop ever since.  I went to do my rehab on Tuesday and it was brutal.  I had to slow way down to breathe because my heart rate was so elevated--from the fevers I think.  CF center said to ease up on the exercising and get fluids down me.  So I've been flopping around and drinking water like a sponge.  I was just short of three weeks off IV's when all this began and the previous two weeks I had felt better than I have in quite some time.  I should have knocked on every wooden surface within spitting distance.  People were telling me I looked good and I had the audacity to say I felt good too. Might as well put a bulls-eye on my chest playing fast and loose with the CF Force that way.

Somehow I need to make things work so I can get out to my Duke appointment scheduled for the 10th of February.  They gave me almost 4 months of freedom and I was determined not to go back with newly cleaned-out lungs like I've had the past three times.  I wanted them to see the true me in all my crackly, wheezy glory.  Not sure how it's gonna work.

On a much happier note, our mighty Broncos are Superbowl bound!  I've worn my team t-shirt the past two games and refuse to wash it just in case Peyton and the boys need some of the lucky mojo still clinging to my #18 apparel.  Bronco mania is everywhere.  One can not turn on the news without hearing what Peyton had for breakfast, what the newly-projected weather forecast is for Giant's stadium (it changes daily), what Peyton had for lunch, what the injury status is for key players, what Peyton had for dinner, and on and on it goes.  I am loving every minute of it.  After thinking we were set to win last year and then going out in the first round of the play-offs, we fans believe our team deserves this chance to win it all this year.  GO Broncos!!

Wednesday, January 1, 2014

2013 good riddance...

What a year this has been.  I've had a difficult time writing my blog because to quote a famous film star, "If you can't say something nice, don't say nuthin' at all."  Yep Thumper, that about sums it up.  Between spending all of 2013 in different degrees of dizziness, to cataract surgery with its three months of wearing ugly glasses, to an embolization that did more harm than good, to being diagnosed with glaucoma, to IV's every two months with new side effects of stomach pain and mini migraines, to losing more lung function, together with other family stresses,  2013 hasn't exactly made my top ten list.

I just finished up another 25 day course of IV meds two days after Christmas and although I am not coughing near as much or feeling so congested, I seem to be breathless doing the least little thing.  Not sure what to make of this but really don't want to mention it to my CF team for fear I'll be admitted for stronger meds (the ones that scare my kidneys) and I just wanna give my poor body a break.  We'll see how things shake out in the next week or two.

Christmas was very low key this year. Found out Amazon is a sick girl's best friend since I didn't feel like leaving the house most of the month.  Due to my Prime account with them and the speedy "Men in Brown," we were spared a Dickensesque Christmas however.  Even Christina's holiday box made it to Virginia in the nick of time (a Christmas miracle!) which would have been doubly tragic since she couldn't make it home this year.  On a strange but true note, we decided to take down our Christmas tree early (usually wait till after New Year's) because the green-covered metal thing caused interference with the wireless network thus causing all our computer electronics to go randomly on the fritz.  Christmas tree or internet connectivity--we have our priorities!  

Here's to a great new year in 2014!  May I be as blessed (because despite all my complaining, I truly was) as I have been in the past.  May you see the blessings in your life as well I pray.