I'm Still Here!

If you're looking for updates, go to my CaringBridge page.  I'll continue updating that until I get to leave Minnesota!

http://www.caringbridge.org/visit/newlungsforjustine

Thank you for keeping up with me on my journey!  It's been quite a ride so far!

-Justine

Long day doesn't even begin to describe today!

Things I did/had done today:
took out the  blown iv in my right fore arm, replaced it with one in my left arm
adjusted my epidural so that my pain was under better control
got my Foley catheter out
pooped (they wouldn't let me eat until I did that, so I really didn't have a choice) in front of a male nurse on a portable commode no less... overcame a lot of fears right there with one act!
went for a walk
ate my first two post transplant meals
got a fruit bouquet, chocolates, balloons and a teddy bear to cuddle
incentive spirometer
acapella
peed a lot (lasiks helped out there b/c i was holding onto so much fluid after being on the bypass machine and prednisone)


goals for tomorrow:
get out of icu
one whole lap around the floor
one more chest tube out
break 1000mL on IS

some more waiting? don't mind if i do!

down in pre op.  waiting for the visual go ahead on the other end.  when we get that call they'll take me back.  until then, we wait.  maybe an hour.

Ate my first immunosuppresive drugs

SoluMedrol 1000mg IV  - steroid
Prograf 3mg
Cellcept 1000mg

Pills down the gullet at 3:18 and IV started.  My nurse said the plan is for them to come get me at 5am to take me down to preop to get me prepared. 

Waiting to sign some release forms now . And owie, my arm... solumedrol in a dinky peripheral iv kind of stings. 

Today I got THE CALL

I mentioned to several people that because I was going to spend so much time and money on my Halloween costume this year, I would probably end up not getting to wear it because I got a call for lungs.

It was 2:30 this afternoon, I was at the salon, my dear friend Jackie was helping me with my Gaga wig for tonight.  Chris' family had a Halloween party and it was going to be my big costume night for the holiday.  She was teasing the yucky synthetic hair and Kayla brought me my phone.  It was ringing and the caller ID said "Fairview"... I stopped and said, "Oh my god.... Hello?"  It was my coordinator, she asked how I was doing and I asked the same, she then said, "How do some new lungs sound?" I think I replied with 8 or 9 "okays" before she could tell me to calm down (I think at this point Jackie asked me "Is this the call for lungs?" and I was nodding my head) - and then we got disconnected.... so I waited a second for her to call me back, meanwhile, dialing my dad on the salon phone.  I got the info from my coordinator, hugged everyone goodbye and drove (sped) home while calling mom, dad, aunts, boyfriend and other important people.  I think I made 6 phone calls on the short drive home.  I ran inside, grabbed the things I knew I would want (in addition to the bag I already had packed in my car) and went back outside to meet Chris, who had dropped by my house to kiss me goodbye.  We pulled out of the neighborhood just as my mom was pulling in, so she met us at the hangar to say goodbye.  The plane left about 4:15 to minneapolis and we arrived in my room at the hospital at 7 after an ambulance ride from the airport.

When I got here I immediately showered with the special (code for nasty) soap.  They drew lots and lots of blood, did a chest xray, started me on iv antibiotics and ALMOST gave me my first dose of prograf and cellcept BUT the coordinator called just as i was lifting the cup to my mouth and said hold off on taking them, because the people on the other end were still trying to find homes for the other organs.  All I know is that the lungs were holding up fine the last I talked to anyone which was a couple hours ago.  At this point we don't know if it will be minutes or hours before we hear anything more. Anesthesia has been in to talk to me and they told me to get some rest - yeah right!

I will try to text an update when I hear something, but if I don't get the chance, my mom should be updating my caring bridge site:

http://www.caringbridge.org/visit/newlungsforjustine

As Rocco says in the Boondock Saints  "I'll catch you on the flip side!"

2/2: e link to the right for updates from mom! Xoxo love you all!

1/2: Got the call about 245, on the plane now headed to minneapolis for lungs!!! Will update when we land and get to the hospital! Check caringbridg

What's next?

Tuesday morning did not go as planned.  My doctor decided she did want to do conscious sedation during the procedure, so I had to get an IV placed.  The nurse blew the first vein but got it in the other arm.

I've never had to take out my contacts for conscious sedation before, so I was unprepared to do so, leaving me nearly blind the rest of the time I was at the hospital.  They wheeled me back and the last thing I remember was looking at the lights on the ceiling thinking "I wonder if they've already given me something" and just then the anesthesiologist says "you're going to feel some medicine"..... An hour later I am back in my bed, first thing I do when I open my eyes is say "Did it work?" and my doctor just shook her head.  Cue groan, roll onto side, pull covers over head.

What I found out later was that my doctor tried unsuccessfully to locate my fallopian tubes for 30 minutes.  This whole procedure from start to finish should take only 5 minutes.  Because it's the wrong time in my cycle (thanks to insurance and administrative errors delaying us), my uterine lining was too thick to have good access to my tubes.  Usually a patient is prepped for this procedure with 30 days of hormone treatment to thin the endometrium, but because of my previous history with blood clots, I wasn't able to do this and we tried to time it with my cycle.  Now my options were to try again in 3 weeks and hope it goes better or to have a Lupron Depot injection and try again in 3 weeks.  The injection suppresses estrogen production and prevents endometrial tissue growth.  Thus for the month that the injection is active I will experience menopause symptoms: hot flashes, emotional lability, night sweats, headache etc... I opted to go with the injection because I would rather only do this once more than possibly twice more.

After a shot in the booty, I was on my way.  My doctor gave me a hug yesterday and told me "You might hate me, but it will be worth it"... I hope she's right... about the being worth it part.  I hope this works!  So far I'm not a raging bitch, my right cheek is just a little tender.  I'll give it a few days before I decide whether or not I'm willing to do time for homicide.

Loaded Update

The past three weeks have been extremely busy and I will do my best to cover it all!

The Big Decision


I've always been uneasy with the idea of having children, knowing that as someone with CF, I would be passing on a copy of one of my defective CFTR genes.  After several years of thought, I've come to the decision that I don't want to have children of my own.  I don't need to elaborate on all of the reasons here, but this is what I've decided.  My doctor and I have decided that I will undergo an Adiana procedure, which will block my tubes off (similar to tubal ligation, without any incisions) and prevent pregnancy.  I'm actually very excited about it.  It's something I've wanted to cross off my list of things to worry about and now I finally get the chance to do it!  I wonder if this will earn me a Darwin Award?


Drugs


When I was admitted several weeks back, I had made a decision to stop taking Ambien.  I have been taking it for over three years and do not want to be on it anymore.  I had my last half of a pill the first night I was in the hospital.  Going off sleeping pills in the hospital turned out to be a great plan because they were getting me up at 5:30 in the morning for my first CPT, and I didn't have time to take naps during the day.  I was ready for sleep at night and slept well, despite the fact that people were in and out of my room through the night.

A little over two weeks ago I also began tapering off one of my two antidepressants (Remeron).  know it will take several weeks for my body to adjust, and when I go back for another check-up, we'll discuss going off the other one.  I feel like right now is the best time for me to be ridding my pill box of unnecessary pills and my relieving my liver and kidneys of extra work.  Post-transplant immunosuppressive drugs are very taxing on these organs, and the fewer medications I have to take, the better.  I feel like I was put on antidepressants prematurely, at a time when I was just learning that I would need a lung transplant, at the age of 21.  I don't know whether it was time or the drugs that eventually had me less terrified of the prospect, but I feel like now I've developed sufficient coping skills and healthier outlets for the many emotions that accompany chronic illness.  It's time to see if I can fly solo!


Exercise


Right before I left the hospital, I began using the pedal machine to get my legs ready to hit the ground running (or walking).  I joined the dailymile (friend me on there to follow my workouts!) and got three in before I was discharged on the 29th.  I expected to have extreme exhaustion and muscle fatigue accompanied by lots of low blood sugars after I got back to my normal routine at home, but experienced none of those things at all.  I'm not complaining!


Lungs

I went home on 1 week of IV vancomycin, which was manageable.  I do feel TONS better than I did when I went into the hospital.  I'm still having occasional pains in my lungs, but not constant or consistent.  Ibuprofen seems to take care of it.  They are staying clear and for the most part I feel well!


Halloween


For Halloween this year, I decided to go big - Lady Gaga.  I'm making my costume for the first time ever.  I don't know how to sew but I do have a vague idea of how I'm going to go about this outfit.  The shoes are finished and they took me about 8 hours to do.  I will post more pics as it progresses, but here are a few teasers.

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!

A Poem

It is life, and it is misery.

Oh, thieving and sustaining demon,

you will one day be dead to me,

but for now, "ON"... I'll soon be breathin',

free of your time and space consumption.

Can you guess to whom or what the speaker is writing?