Flash Me Friday!

Ok, I thought I'd get in on the fun since I enjoy everyone elses' flashes so much!

The view where I live (today):

To the southwest

To the southeast

Down (obviously)

test

testing email blog update

The past two weeks

I've been working harder to control my blood sugars the past two weeks, and it seems to be making a difference.  My trend line has been lowered by about 50 mg/dl, which puts me in the 150-225 average range, instead of the 210-250 range.

Progress, not perfection!

A couple weeks ago I was beginning to feel pretty punk, and went to the doctor.  My PFTs were only down a little, which shocked me.  I was expecting to have to be admitted or do home IVs at the very least.  We opted for a couple oral antibiotics instead, and I finished them last week.  I have to admit, they really did help.  But now I'm not sure if I'm going downhill again.  My left lung (just to the left of my sternum) has been hurting pretty badly at times and has been getting worse, not better, as time passes.  It's not to the point where I need to see anyone about it.  Even in the past, when it's been nearly unbearable, they really can't do a whole lot for me.  Maybe I will just get some new lungs soon?

I exchanged emails with my transplant coordinator last week and what I was told was:

• they have done 16 transplants this year
• they have been quiet the past few weeks (no transplants)
• I am essentially at the top of my blood type list because the other people who are my same size, with higher lung allocation scores, have other factors which make them more difficult to match - therefore, they expect that I should be next

This news has stuck in the forefront of my mind.  I know that the holiday weekends are typically high organ offer times.  With every place I go, every thing I do, every thing I plan, I keep in mind that I need to be able to get my ass to the airport stat if I get THE CALL.  So no riding in other peoples' cars, the cell phone is always visible, and my bag is (still) packed in my car, ready to go.  I even have my digital camera with me (battery fully charged) so I can get lots of pictures to document my journey, because I may or may not be too excited to remember details.  

I continue to pray for my donor and my donor's family, because they will be experiencing a great loss just as I am getting the opportunity for renewed life. 

Day 2: If you are what you eat, then I'm a CARBOHYDRATE covered in CHEESE

Some things I ate today:
An entire box of Spirals Mac & Cheese (extra butter, half and half)
an 8 ounce block of cheese
more cotton candy

Blood sugars: 119 (fasting), 177, 208, 140

It just dawned on me why my tummy might be a little nauseated.  Maybe I will try to mix better things inside it tomorrow.  Right now, it's tums and a banana for a little bedtime snack.

Day 1: OPERATION NORMALIZE GLUCOSE LEVELS

Since I was diagnosed with Cystic Fibrosis Related Diabetes (CFRD) when I was 12, I’ve never been consistent with checking by blood sugars nor with doing enough insulin.  This is a graph of my levels since May 27, the day I got out of the hospital. 

My doctors want my blood sugar between 70 and 150 – at all times.  As you can see, it’s rarely below 200, often spiking dangerously high and bottoming out scarily low.  Terrible control.  And as you can see from the orange line, it’s been trending steadily upward all summer.   I’ve been lazy and complacent, and because I haven’t experienced any obvious ill effects, it’s easy to stay that way.  But the minute my kidneys fail I know I’ll be backpedaling faster and harder than I ever thought possible.  I know post-transplant I will need every bit of kidney function those little suckers can muster.  So today starts Operation Normalize Glucose Levels!  My mission is to test my glucose BEFORE every meal and to accurately count and portion carbohydrates so that I know exactly how much insulin I should be doing.

My fast-acting insulin guidelines:

1 unit per 15 grams of carbohydrate

Sliding scale:

1 unit for every 50 mg/dl above a glucose level of 150 mg/dl

DAY 1: Woke up this morning (barely, it was 11:30) and my blood sugar was 111.  Awesome start.   Rest of day levels: 134, 111(agian!), 100.  Success.

Some things I enjoyed today spike-free, because I counted carbs (accurately) and actually did the insulin:

Cotton candy

Gummy bears

A twinkie

Things I avoid, regardless of how much insulin it would take:

Regular soda (diet when I’m craving the bubbles, or just water – there’s a novel concept!)

Juice (though I do have a smoothie every once in a while)

The next challenge will be bringing my glucose monitor with me out into the world, and making sure I test before I eat.  Also, portion and carbohydrate estimation is another downfall of mine.  I been told, I’ve read the literature, but I still have no concept of how much is a cup of rice or how much is a tablespoon of honey, especially when I’m drizzling it into a cup of tea.  

In light of the fact that so many people are finding out about the Double Rainbow video, here are some pop references to the viral video

Today's Foxtrot in the Funnies

Not Perfect, but delicious.  So intense!

.  

Even THE NPH is into double rainbows.

Can he tell us?  What does it meeeeean?







and for those of you who haven't seen it yet, I give you "full-on double rainbow all the way across the sky"guy

Time for an update!

I have little to report on the health front.  Hot and humid weather causes me significant breathing issues, so I try to stay inside as much as possible.  Unfortunately, inside usually means sedentary at the computer for a gross (as in disgusting) amount of hours.  I'm in the middle of a reading ebb.  Not doing as much as I have been.  It's just too stinkin' hot.  I've been sitting in my room, enjoying my fan & my Scentsy flameless scented candles and collecting dust.  I do have a cat to entertain me, so here's what Zoe's been up to lately.

Pog-rich.  Yes, pogs ... I can't believe I still had (had, being the key word, as they went directly in the trash following this photo) these tucked away somewhere.  This photo taken in the style of Stuff On My Cat.  

Chasing her tail in a her new bukkit.

Harassing Skitter.

Annoyed that her scratching post has become my Helios resting station.

Found a bubble wrap bed.

Actually it looks more like a coffin.

Tuckered out.  Getting into so many things is exhausting when you're little.  

Hopefully this week will bring a call.  I'm very, very ready to get some new hardware installed.  My good friend, Cystic Gal got her lungs on Tuesday!!!  I got a text from her yesterday and SHE CAN BREATHE!  I'm so happy for her!  I'll leave you with one last photo of me, sporting my Cystic Gal t-shirt!  

Morbidly Pleasant

I'm sitting in my room, facing my computer.

To my right is a window.

I open it and let in all the southern light that I can.

Zoe seems to find joy in early morning sunlight, and I do, too.

     It's a recent discovery for me - before I wanted the shades drawn, isolating myself inside my man-made cocoon of artificial lighting, creating my own solstices, deciding when daylight ends or begins.

All the rest of my life is based on artificial supplements: my oxygen, my digestive enzymes, my bacteria fighting abilities, even the ability to effectively cough has been assigned to a machine.  Why not shut out the sun?  It will probably give me skin cancer one day anyway.  But why, then, does it make me so happy?  When the day is new and I'm resting in between the cool sheets, my body still hot from sleep, I feel energized, motivated; I feel "normal".  And then I roll over, that familiar urge to cough strikes without warning and I shoot up into "cougher stance".  I reach for the kleenex to spit and drop it into my bedside trash can.  I have everything I need within reach.  I hate that my life has come to this point, being so medically handicapped, that I have to alter my living environment to accommodate the necessities.  The nice thing is, once I'm thoroughly exhausted after doing my morning treatments, I can sometimes crawl back into bed and pick up where I left off sleeping or reading, with a napping buddy at my hip.

It's just morbidly pleasant.   

This is MY History

What you see below is a plot of my actual pulmonary function results over a span of 11 years.  This is a graphic representation of the decline pattern of my unique case of Cystic Fibrosis.  On the graph there are two lines.  The blue line shows the Forced Vital Capacity (FVC) and is measured in liters.  It shows how much air I can exhale out of my lungs to indicate how much capacity I have.  The red line shows the Forced Expiratory Volume in the first second (FEV1) and is also measured in liters.  People with healthy lungs should be able to exhale about 85% of their entire capacity in the first second of forced exhaling.  Simply put, the FEV1 is the most widely accepted indicator of the lung function in a patient with Cystic Fibrosis, where as, the ratio between the two numbers tells how elastic (or scarred/inelastic) the lungs are, which is also important.  

Some Things to Consider When Reading the Above Graph:

The pink line indicates the period of time when I was still riding horses and playing tennis regularly.  As time moves forward, I played tennis less but increased my riding.  In the end of my riding and showing career, I was on at least one horse 6 days a week.

Between the orange hash marks, I was attending college.

The yellow dots represent the day I quit drinking alcohol.

The green circles represent the day I had my gall bladder removed.

FVC All-Time
High  3.44L 3/02/02
Low  1.22L  3/16/09

FEV1 All-Time
High 2.49L 12/23/03
Low .62L    7/11/06

I was evaluated for transplant in May 2008 and was listed June 11, 2008.

One interesting fact is that I had completely quit doing airway clearance therapy or chest physical therapy just before this graph begins.  I didn't even own a vest until September 2005.


I know that the combination of the end of my riding career (the end of exercising) and being away at college (slacking on treatments, drinking, staying up late etc.) had a huge effect on the ability of my lungs to maintain function.  Had I known that any of these things would have such a consequence on my health, I would have done it all differently - but what's done is done.  The only thing I can do now is share my story so that others don't make the same mistakes!


Lessons I Learned (and I hope you will, too!)

1. Do your CPT, airway clearance, acapella, flutter, vest, whatever you do - just DO it! I spent more time coughing during the day when I wasn't doing these things than I would have if I'd just taken a half hour a couple times a day to sit down and make an effort with whatever method I chose.

2. Get out of breath.  Whatever activity that gets you up and moving, something you like, keep doing it. It's much harder to get back strength and function after a period of absence than it is to continue maintaining.  If you have to wear oxygen, make it happen.

3. Alcohol in excess is an enemy.  It's a Central Nervous System Depressant, meaning it affects your breathing (decreasing the depth and frequency).  It may feel nice not to have the urge to cough while you're drinking - I felt normal, like I didn't have CF when I was drinking - but just as with other muscles we don't exercise, our diaphragms lose strength, strength that we need to cough and breathe deeply.

4. Acid reflux in Cystic Fibrosis is common.  I never knew my gall bladder could be to blame for some of the symptoms I was having, excessive bloating and shortness of breath (especially after eating).  After I had my gall bladder removed, I felt instant relief (once the pain subsided!).  I wasn't constantly popping Tums despite taking 20mg of omeprazole twice a day.  And I even gained weight, because I wasn't getting sick after eating or avoiding eating a lot because of the bloating.  If you're having issues with GERD, ask your doctor about getting some liver blood tests done.  If they show abnormal numbers, it might be wise to get your gall bladder an ultrasound.

5. When the doctor says it's time for IV antibiotics and a couple weeks in the hospital - DO it!  You don't get 4 airway clearance, all your IVs AND have time to live/work/cook/eat/clean/be a person at home.  Don't bother, it's more work than can possibly be done and you're supposed to be getting well!  So many times I opted to do home IVs and ended up more run down and tired than I would have been if I'd just gotten admitted.  I know it may be difficult to schedule someone to take care of the kids and the house or to miss work/school, but really, everyone wants you around for a long, long time, and if you're not doing all you can to make sure that happens, then you're not only doing yourself a disservice, but you're also hurting the ones you care about most.  It sucks giving up the control of your meds and time, to be woken up at all hours, to have a constant stream of people asking you the same questions over and over, to have really really bad food - but trust me when I say that I truly believe it is for the better.  The hospital doesn't JUST want your money this time.

6. If the doctor says you need to wear oxygen, DO it! (I think that's my new motto - Nike's not going to sue me are they?) So many times I've been too embarrassed to wear my oxygen in public.  I still struggle with it at times or certain places.  But, ultimately, it's just going to wear me down and do damage to my heart - the last thing I need is a lung AND heart transplant.



And here, despite everything, I feel absolutely wonderful.  I've made peace with the way things are, I don't regret the past, nor do I wish to shut the door on it.  I love my family, I have amazing friends and am connecting with so many awesome people in the CF community.  If you have a blog - I want to read it!  I want to know your stories, share in your problems and work together to find solutions.

I'll leave you with two pictures of me in my prime, doing what I love most in life.  One day, after transplant, I hope to be able to return to the show ring.

Left: Lexington, Kentucky 2002
Right: Columbia, Missouri 2003

OMLG Twinkies!!!!

The last time I was in the joint (for those of you who don't follow, I mean the hospital) a friend and her daughter were coming up to visit me.  She called while she was at the convenience store to see if I wanted any junk food - um, YES!

Side note: When I have been in the hospital in Nebraska, they have a convenience store in the hospital, so it's an elevator ride away to my heart's content, provided I don't mind lugging an iv pole and oxygen tank with me.

She was naming off items in front of her and I stopped her, "Do they have Twinkies?  I haven't had a Twinkie in years!"  I was in luck, she brought me 2 2-Packs and right before bed I thought I'd have one... Just kidding, I ate all 4 of them.  A I was sitting among sticky plastic and cardboard wrappers I knew that I would have to get more Twinkies, STAT.  My Twinkie addiction was off and running!

Luckily I was in the hospital in my hometown and Daddy, my dealer/enabler, is just a phone call away.  The next day he brought me a box of 10 of them, but warned me they might not be very good because the filling was green.  I opened the bag and saw what he meant - Shrek Twinkies!  I think they were even more delicious than regular Twinkies.

Boxes and boxes of Twinkies later, and several pounds gained, I have decided to make a diary of my Twinkie consumption on Twitter.

Follow me HERE!

Let's just see how many Twinkies I eat.  I will not be altering my pattern of Twinkie-eating in any way, so what you're reading will be actual, real-time Twinkie ingestion.

Bon AppeTwinkie!