Dandelion Wishes

FDA Approves Cystic Fibrosis Drug - The Wall Street Journal

Kalydeco, Drug That Treats Root Cause Of Cystic Fibrosis, Approved By FDA

This news is big. HUGE in fact. This is the first time that there has been a drug to tackle the root cause of Cystic Fibrosis and not just a symptom. People throw around the word CURE left and right, and this my friends is the closest thing to a cure that I believe we will see.

More than 1,000 mutations in the CFTR gene have been identified in people with CF. I have the classic and most common ΔF508, and one other mutation.  This drug, which was approved by the FDA today is for only one of these mutations, G551D, as far as I understand. While G551D is NOT the most common, it causes CF in about 4% of the CF population, some 1,200 people in the United States. I have heard of other CF friends (G551D's) who were participants in the trial phases of Kalydeco, and who claimed it was immensely helpful.

Just to clarify, since this is my blog, this drug will probably not affect me. Not only am I the wrong mutation, but I am post transplant and so my health worries lie elsewhere, such as infection/rejection. Even if they were to develop a drug for ΔF508's, in a way it is too late in my own life. At most I could imagine it helping perhaps with my sinuses and G.I.

But that is not what I want to talk about.

I want to talk about my childhood prayers. My wishes on every birthday cake. My wish for every dandelion I blew into the wind.

A cure for CF.

And although I am fully aware that this is not exactly a cure for all CFers, I now have hope for that dream. For those babies being born today with the gene mutation of G551D, it is coming true.
This might snowball into other drugs being developed for other CFTR mutations.

If just one child can be spared the suffering and pain I have had to endure because of Cystic Fibrosis, than my wish has come true.

1,200 people being CURED.  What an awesome, amazing, exciting day in the CF community.
And ΔF508 is next guys, just wait and see.  Correcting G551D shows that it is possible.
We're coming up!

If anybody reading this has ever donated money to the Cystic Fibrosis Foundation I want to tell you, as I hold back the tears - THANK YOU. It certainly has helped a hell of a lot during my lifetime!

Thank you God, from whom all blessings flow ...

my pancreas hurts

or an ulcer?

100

Yesterday I had an amazing doctor's appointment.  (Well about as amazing as a doctor's appointment can be.)

I blew a 102% on my PFT (fev1) !!!

I am almost two years post TX and finally, FINALLY broke 100.  I have been waiting for this day for basically my whole life.  The last time my lungs were at 100% capacity I was a child.
My lungs feel amazing still.  I am so thankful and blessed.  I wish I could have shared this news with my old CF team that had watched me struggle to breathe and helped me out so much over the years.  A big 'thank you' to them as well.

Lately I have been struggling a bit with anxiety.  I think a lot of it stems from not wanting to waste my life. It is hard for me to just relax.  I get worried that I am wasting this health, this energy level, this time.  With great power comes great responsibility or some rubbish such as that.
On one hand this can be a good thing.  It drives me to accomplish things.  Projects. Plans.
On the flip side it can be burdensome.  I feel anxious to an uncomfortable amount at times.  It is difficult for me to decipher how much of this anxiety, if any, is normal.  I am working on it.
To have the strong desire to live life to the fullest and to be out on adventures all the time, and then spend everyday doing the repetitive, constant house work can be frustrating.  One of my old roommates (who is a new mother) put it best when she said she feels like a machine on some days.  Not to say we don't adore our children, but I can certainly relate to that thought.

So trying to balance giving my kids the stability and routine that they need while trying to soak in new experiences is where I am at presently.  I only have so much time left - I want to squeeze everything in.

I want to live life to 100% capacity.

CF Links

A shout out to some people who have given me a shout out:

http://peterspavementpounders.blogspot.com/2011/01/guest-speaking-about-cf.html

http://bennettgamel.blogspot.com/2011/02/yucky-lungs.html

http://d-livered.blogspot.com/2011/04/blessed-by-friends.html 

And I can't forget my one and only sister (who also has CF):

http://thelighttheheat-rebex.blogspot.com/

Have a good day you all

Anna Banana

One of my CF friends, Anna Modlin is getting a double lung transplant this very minute!  She is in surgery at Stanford right now.  Please pray for her.  Please pray for a smooth surgery, smooth recovery and the donor's family.  Her is her blog where all updates will be posted:

http://annabananasvarietyshow.blogspot.com/

My Heroes

Two nights before my sister Rebecca's wedding she was feeling sick.  Our friend Daniela had flown up to be in the wedding and was staying with Rebecca at her house.  Rebecca was so sick and weak she asked Daniela to come in the bathroom with her while she showered just in case she fainted.  She took care of her, got her her medicines and they fell asleep holding hands.

I heard this and thought it was so sweet.  I thought back to Eva's blog before she died and remembered that she too had a circle or friends who were there for her, comforting her when she was sick.  These people are amazing.  The caregivers, the real friends.

Anyone can find friends, the type to have fun with.  But who can find friends who are there through thick and thin, rolling up their sleeves and hopping in the trenches with them during their sickest hours.

I am so thankful for the people in my life who have had the guts to stick around.  To not get scared off.  To those of you who have been there for me thank you.  Thank you from the bottom of my heart.  

You are my heroes.

The Lunds:  I haven't seen or heard of these folks for years, but they were very encouraging to us.
To my sisters-in-law:  They write me the sweetest notes and cards - totally brighten my days.  Thank you.
To my in-laws:  I have awesome in-laws who are so supportive.  Thank you.
To Tyanna:  Who listens to me talk about blood and guts stories even over dinner.  And gets mad at me if I don't keep her in the loop.  Thank you.
To Tosh:  Who kept coming to visit me almost every time I was in the hospital.  Even though I had been super crabby to him in the past.  Thank you.
To Christina Bass:  Who has helped me so much, in so many different ways.  Watching Levi, cooking.  Thank you.
My mom and dad:  I can't even begin to start to think of how much they have sacrificed over my whole entire life.  Thank you
Seth:  Seth never bailed on me.  He has been my knight in shining armor and my strength.  From getting me food, to cleaning up my hospital room, to knowing how to calm me down, really the list is endless.  Thank you.
To friends who have helped financially, thank you.  For those of you who have prayed for me.  Thank you.


There are people who are willing to get down and dirty.  Who remain friends when all is not sunshine and roses.  People who believe me.  People who don't think I am just making excuses or being lazy.  People who take Cystic Fibrosis seriously, yet don't treat me as a frail person.  People who have pounded my chest to loosen up the mucus.  People who have taken the time to research CF.  People who knew my treatments well and goofed off and had fun with them.  And again, people who have had the guts to stick it out with me.  Those people are my heroes.  Caregivers are my heroes.  I watch people care for other people selflessly, and it is so beautiful.

Seth Boren you are my hero.
Mother you are my hero.
Father you are my hero.
Kyle Craw you are my hero.
Daniela Dawson you are my hero.
Brittani Weybright you are my hero.
Rene Hight you are my hero.
Casey Joens you are my hero.
Brad Beyenhof you are my hero.
Nate Lawrenson you are my hero.
Julie Howell you are my hero.
Nana you are my hero.
Pop you are my hero.
Grandma you are my hero.
Grandpa you are my hero.
Mendy Riggan you are my hero.

And there are more.  Real live heroes.

A year ago . . .

"a year ago this week we all caught the swine flu ...Levi and I eventually got over it but Leah never really did - until she got new lungs..."


That was Seth's Facebook status last night.   It got me thinking.  Yep, it was around a year ago when my health started spiraling down to an unmanageable, scary level.  Until then I had lived a relatively normal life.  Yes, I had treatments to do.  Yes, I would have to be admitted to the hospital for "tune-ups".  Okay, so maybe my life wasn't completely normal.  It was normal to me though, and although I was hindered from certain things I had enough freedom and independence to get by.

That is until late last summer...

At the end of July we all got sick.  Very, very sick.  It was the sickest I have ever felt, and I pray to God I never feel like that again.  I was so weak.  Fevers daily.  Never ending, relentless fevers immune to any medication.  Nothing brought them down.  My lungs were bleeding for days on end.  They were gurgling and I tried to avoid the inevitable coughing so I wouldn't exasperate the situation and make it worse.  I could only lay on the couch.  I couldn't stand through a whole shower.  I ended up in the hospital.  Extremely anemic, I could barely make it to the bathroom.  To walk across the room felt like I had just ran a marathon.  Living was exhausting, but I didn't have a choice in the matter.  It felt like I had to do extreme exercise just to survive.  When I was an inpatient a doctor told me he thought it was time for me to get evaluated for transplant.  I was shocked.  As sick as I was,  I wasn't mentally ready to face the fact that I needed a transplant. Around this time I was placed on oxygen.  I had been on oxygen here and there before, but never NEEDED it.  As in, can't-breathe-without-it needing it.  One night my oxygen got pulled out of the wall and I woke up with a panic and suffocating feeling.  I pressed the nurses button.  They didn't come.  They never come.  That was the closest I have been to a panic attack.  Maybe it was a panic attack.  I don't know.  All I remember is that I couldn't breathe, and even later in the day when I could breathe finally I was still shaky from the intense fear I had experienced earlier that morning.

When I transitioned back home I was so, so, so sick.  The hospital didn't help make me well at all.  Just transitioning from hospital to home used up every ounce of energy I had within me and more.  I felt like I was going to die.  I got oxygen set up at home and I laid in bed for days.  I was losing weight at a scary pace, and no matter what I did I could not gain.  Eating was a chore and something I had to force myself to do to stay alive.  The number on the scale kept falling.  I was down to eighty pounds, and did not like what I saw in the mirror.  I looked like death.  People around me were not handling the situation very well.  Sometimes I felt confused why I was the one who was sick, but was handling it better than everyone else.  That may or may not be true, but that is how it felt.

I knew I didn't even have a year left to live, and that it was down to months.  I could feel it.  I wasn't sure that I would make it to Christmas.  It was such a dark time, but yet the comfort of God was so real to me.  I had true peace about "real life"  in eternity.  I didn't want to leave my family behind, and I was scared of the pain, but what happened after I died I was confident in.

This was all a year ago.  And so the wait for new lungs began.  The unknown was terrifying.  The pain was unbearable.  My normally clear head was a mess.  I felt lazy and depressed although I wasn't.  The Lord God revealed himself to me in the most amazing ways.  I learned lessons and things about myself, people and God that I wouldn't have otherwise.  I learned that God is in control and we have no control. I learned that God's goodness has nothing to do with our individual circumstances at the time.  I learned that God gives and takes away, but blessed be the name of the Lord.  I learned that I am very against positive thinking and thinking we can "will things to happen" by our own thoughts.  I have a strong disdain for the word of faith movement.  I learned that if God is for me, who can be against me and that I don't need to fear man or satan.  I learned that being a Christian to have an easier life is not the way to go, and that is not what Christianity is about.

I was blessed to watch this video a few days ago.  Everything this pastor says is a word-for-word into the inside of my brain and heart when I was suffering a year ago.  This is how I felt exactly, and God revealed though His word and spirit these same truths to me.  I am not nearly as articulate as he is in communicating God's peace through suffering.  Take the time to watch it, seriously.

*** Also, please keep this family in your prayers.  James 5:16 ***
You can keep up with what is going on with Daisy Love here at http://prayfordaisy.com/

Drugs

I have been on tons of prescription drugs spanning my lifetime.  And by tons I mean A LOT.  Possibly and probably hundreds.  This includes many hard core, intense and even addicting drugs.

Morphine, Xanax, Dilaudid, Benadryl, Vicodin, Percocet, Phenergan, Ativan.  And more.  You name it and I have probably been on it one time or another.  Well not really, but you get the idea.  I have obviously not taken all of these at once, but as I needed them.  And boy did I need them living through CF and not just CF, but "end stage CF" as they call it.

Some of these drugs I really, really like - to be quite perfectly honest.  Dilaudid is definitely my drug of choice;  the rush and all that it gives while taking away pain, and making it seem as though everything is right in the world.  I am always a little hesitant when I have to taper down off of this drug . . . . something inside doesn't want to!  Which leads me to my next thought.  Thank God my body doesn't seem to get too chemically dependent.  No really.  I thank God for that.  I know of some people with CF who have a very hard time coming off of some of these drugs.  Thankfully I don't.  I have a pretty addictive personality in general, but have never gotten addicted to medication.  Like I said, I'm a little hesitant and sad to stop taking it, but my actual body handles it okay.  I can drink espresso everyday for weeks and then stop cold turkey also.  No caffeine headaches!  It's great.

Anyway,  back when I was extremely sick and frail I was emaciated and paper thin.  Eighty pounds.  I was unable to eat much as hard as I tried.  My doctor prescribed me marinol.  Marinol, in case you didn't know, is the prescription pill form of Marijuana.

Marijuana gives people the munchies.  The munchies is exactly what I needed.  I remember very clearly as my doctor was writing up the script telling me that it might make me high.  Yes it did.  I got high every time.  There were times when I was just sitting alone, cracking up hysterically for no reason.  Everything was funny.  Time was messed up, and so was my head.  I ate though . . . mac n' cheese, slim jims, the junkiest of foods . . . but I ate.
At the time I didn't tell a lot of people I was taking Marijuana.  Only really close friends knew.  I wasn't ashamed at all, but I know that a lot of people might not understand.  I didn't want to "stumble the weaker brother" so to speak.  Being a pastor's kid, I didn't want people whispering about their pastor's daughter being on drugs, that sort of thing.  Even if it was prescribed . . .

Now that I am six months past my double lung transplant, healthy and doing great I have more confidence in talking publicly about drugs I have been on.  I eat fine on my own now, thank you very much, and have not taken a single pill of marinol since.
So I am not gonna hop on a little soapbox and say "legalize marijuana" or any such nonsense.  I just feel like I had such a unique experience by being a Christian, praying about it, God guiding me and blessing me by giving me a drug to help me eat.  (How new-age-ish do I sound right now? Haha.)

Recently I was sitting with a couple of friends and we were talking about our pasts. They were bringing up some things they had done before they received Jesus in their lives.  My friend Myrna asked me "Leah did you ever try marijuana before?"  I just chuckled and was like, "Yeah . . . about six months ago . . . ."

sixtyfiveroses.etsy.com

My friend Hope opened up shop on Etsy!  She specializes in finding hidden vintage treasures at thrift shops and making them available for the rest of the world to enjoy!  She plans on continuing to add more and more to her inventory so keep checking back to make sure you didn't miss anything new!  Also, she will be donating a percentage to the Cystic Fibrosis Foundation.  Click HERE to visit her online boutique!

Camping out

I made it.  Last night I checked in, got a room, and and settled in here.  The unknown is now the known.  This stay is very, very different than a "cystic fibrosis" stay.  It has been an adventure.

I am not on a single antibiotic -- (you can't use antibiotics to treat colds)  I have no CPT to do, which used to take up most of my time as an inpatient.  I don't have a single IV med dripping during the day.  No seriously, not one, at all.

It has been lonely and boring.  New wing of the hospital, new nurses, new everything.  Usually in the past with my old CF regimen there were so many people popping their heads in and out of my room I never had a chance to get bored.  I haven't seen anyone since this morning.  It is so bizarre.  ... cricket ...

Boring is better than crisis though.  I will take boring over crisis any day.  I had no adverse reactions to any of the new medications I was put on, praise the Lord.  That was really my main concern or worry.  Severe allergic reactions are never fun to say the least.  I have experienced one or two, and that is more than I need to know I don't want to ever experience that again.

The days are easier than I would have imagined.  The nights are what are really different...

I do have I.V. meds, they all run at night when I am asleep, which is nice.   The so called "breathing treatment"  is not really what I expected.  It lasts six hours and also takes place while I am asleep.  They put me in a clear plastic tent.  The tent is misted.  They also put an "oxygen mask"on me and that is what delivers the antiviral medication.  The medication is highly toxic, so people are to enter my room while it is being administered at a minimum.  The people who do enter are wearing gloves, gowns, plastic face shields, and masks.  When the treatment is done I am covered in a powdery substance, and then must go shower immediately to detox and wash away the chemicals.  While I clean off they come and change my bedding too (also mandatory).  The whole thing seems a little bit sci-fi or something.  It reminds me of something that might show up on LOST, haha.

My cold is already feeling better.  My stuffy nose is dissipating.  My x-ray looked good.  My blood sugars are crazy out of whack, but they tell me it is probably because of the high doses of some medications I am on right now.  I have begun insulin shots, at least while I am in here.  One night down, four more to go, and my cold is already on it's way out.

So when you hear there is "no cure for the common cold"  it seems as though there is.  It is just a little bit intense.

Eva

Eva died this morning.  She was a wonderful girl.  Please continue to keep her friends and family in your prayers.

Going Stealth

In the past some of my close friends have told me they always knew when I was in a crowded room because of my one-and-only-distinctly-Leah cough. I was always hacking. Whether I was aware of it or not, it just came along with the territory of being me.

Coughing didn't really bother me too much, after all, I was born with a cough and coughed my whole life. I was pretty used to it. What bothered me more was how yucky it sounded and how everyone always thought I had a cold... or worse.

This past week Levi and I met up with our friends the Riggans to have a play date at the park. Levi wanted me to play hide and seek with him, and energetic person I am these days I was happy to. I ran across the playground to find a good tree to hide behind. I crouched there waiting for the two little boys to find me. They were taking forever because they are both too young to be good at the hiding part or the finding part. As I sat there I had a realization that I didn't need to cough! My whole life coughing didn't usually bother me except for the times where I was trying to hide or be sneaky. In a game like hide and seek where you run and then hide, I would get so out of breath only then to spend my whole time hiding trying to suppress my cough so as not to be found out.

This time was different.

I no longer cough! At all!

I'm happy about my new ability of being able to be sneaky. This might just come in handy...

Sleep escapes me...

Sleep escapes me.  Coffee or espresso keeps me awake the day after.
I can see that it is a nice day out right now-- very nice in fact.
I'm kind of in a haze though.... a sleep deprivation haze.
I pulled another all-nighter.  Not by choice.

I found out last night that my friend who I posted about HERE (a few posts down) passed away.  I pray that she knew Jesus and that she is resting in peace.  I was in tears over the loss of her.  The second close CF friend I have lost in a matter of months.  Oh, how I wish she had been able to get a transplant!
I am reminded at just how lucky I am.

These thoughts running around through my head didn't help my crazy brain last night.
Also, don't you hate it when you can't sleep, and you know you have to be somewhere early the next morning, so then you get all anxious that you can't sleep, which makes you even less able to sleep?
Or is that just me?

Well Levi had swimming lessons begin this morning, and by the grace of God we made it there, no sleep and all.  The water was nice and peaceful and warm.  I wanted to hop in and join the kids.  Last summer Levi overcame the scariness of dunking his head all the way under the water.  Today he was a little more hesitant but I'm thinking it was because he hasn't swam in so long.  Hopefully he'll catch back up to where he left off last summer in no time.  I know he will.

Well, *yawn*  until next time...

Inquiring

Can I just take a moment from the regularly scheduled programming to say something?

CYSTIC FIBROSIS SUCKS.

(I would use stronger language, but I don't use stronger language.)

Some of you already know this but in case you didn't -- take my word for it.  I generally don't like to complain about this stupid disease I was born with.  Although it has caused me much pain and suffering I fully believe that things could be much, much worse.

Tonight, though, I am fully reminded of just how heartbreaking and horrible CF is.

One of my childhood friends from CF camp is dying right now as we speak.  She keeps getting turned down to be listed for transplants at different hospitals.  She is not getting the "second chance"  that I was able to have.  The doctors have decided that she has too many complications to receive a lung transplant.  Every summer we shared a cabin for a week, and I remember being closest to her than anyone else at good old Camp Pillfeather.  She is a fun, bubbly person and it is just so sad to see her so sick and hurting.
Yes, CF sucks.

Tonight we were blessed to have another friend of ours drop by the house for a visit.  She has always been such a blessing in my life... I love talking with her.  Her walk with the Lord is so encouraging and she is not afraid to be real.  She has always been nothing but gracious to me. She lost her son to Cystic Fibrosis when he was only five years old.  This is particularly gut wrenching to think about as it is the exact same age my son Levi is right now.  It is truly heart breaking and just plain old not fair.  Knowing that that sweet little boy had to suffer, brings me to tears.  She told me of how she would hook him up to his IV while he rode his tricycle around.  That little guy had more to deal with than most adults ever have to.  Despite her best efforts her son never got the chance to do so many things here on earth.  I know how awesome of a mom she was (and is) and it just kills me that her son was taken from her and at such a young age.
Yes - CF sucks.  Bigtime.

God has a plan for everything, and while I struggle to understand why He allows certain bad things to happen, I'm convinced that I won't be able to grasp that concept until I am in heaven.  How can a loving God allow a child to suffer and die like that?

Honestly, I don't know.

I don't know why He has allowed me personally to be in so much physical pain.  Back when I was feeling sick that is a question I would literally ponder on a daily basis.

Why?

Why?

I do know that there are reasons.  I do know that we are not here by an accident.  I do know that the God in heaven is a loving God who cares about us more than we even care about ourselves.  I do know these things... but there are a lot of things I don't know.  Why He allows suffering is one of them.  I know God well enough to know to trust Him.  To trust that He works out everything for good for those that love Him.  I know that we live in a fallen world, and we have all sinned and deserve death.  But the question remains... If God is God then couldn't He just change the way it is "set up?"  Couldn't He make it so we don't deserve death?  (He did actually by dying for us on the cross --- but that is a whole other blog entry in and of itself...)  Anyways while this is something I struggle to wrap my mind around this scripture always comes to mind.

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21

I may not understand anything right now, but I choose to praise God anyway.  In heaven our tears will be wiped away, and I hope we someday will understand in heaven.  This is also a somewhat encouraging scripture to me:

Blessed [be] the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.   2 Corinthians 1:3-4

Anyway CF sucks.  It really, truly does.  It is a way more intense disease than people realize.  It is deceiving because people with CF look healthy even when they are not.  But there is real suffering, pain and hurting beneath.  CF sucks, but God is good.  And although to many people that does not make sense, it is truth.  For those of you that are Christians here is some scripture directed towards us regarding suffering:

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward [man] is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding [and] eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen [are] temporary, but the things which are not seen [are] eternal.  2 Corintians 4:16-18

For I consider that the sufferings of this present time are not worthy [to be compared] with the glory which shall be revealed in us.  Romans 8:18

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.  Romans 5:3-5

A topic so mind boggling and confusing as to why a loving God allows bad things to happen, it helps me to try to keep an eternal perspective.

I cannot see the big picture.
I cannot see everything at once.
I cannot see the future.
I cannot see outside of time.

I'm just trusting....

65 Red Roses

Please keep this girl Eva and her family and friends in your prayers.
Kindly and thank you.

Drug Deal

An unidentified CF Husband transfers an unknown substance to another unidentified CF Husband...

Very, Very Good News

Good news!

Yep -- you guessed it!  We can move back home!  We don't have to live at the hometel anymore!
Clinic went very well.  I got to do PFTs and I blew an FEV1 of 77%!!!

To the average person 77% lung capacity might not sound that impressive, but for it being the very first time blowing after the transplant I couldn't be more thrilled with those results.  Prior to the transplant I was functioning (barely) at just 20% lung capacity.  Now that my lungs are not deteriorating my lung capacity will keep climbing, instead of dropping.  A very exciting prospect.  I'm looking forward to beating my score next time, as I get even more fit and my new lungs expand even more.  We are just thrilled.  God has been so gracious to me, to give me this reprieve of good health!

The rest of my appointment went excellent as well.  The doctor looked at my X - ray and he said that it was just perfect and that "It looks like you didn't even have a transplant."  I asked if the air trapping was gone and he said it was.

Here is a picture of my bones - for your viewing pleasure.  Haha.
When I got the transplant they literally had to saw my bone (the sternum) in half to fit the lungs in.  Then they stitched it back up with wire.  The wire stays forever.  If you look closely you can see the wires inside of me....

To top it all off they lowered my dose of Prednisone!  This is also very good news.  As I have said before the side affects from that drug are pretty miserable, so tapering down the dose is something I had been looking forward to.  I will hopefully be sleeping more soundly and losing these chubby cheeks that are caused by the prednisone.  My blood sugars have been a non - issue so far, and with the lowering of the steroids, that will continue to be the case thankfully.

I feel better than I have felt in years.  It is amazing to not cough or do treatments.  My energy level is the biggest difference I have noticed.  I get by on much less sleep, and go throughout the day without feeling tired ever.  I raced Levi running this week - and won.

Thankful doesn't even begin to describe how I feel - it is just pure felicity!  Praise the Lord Jesus.

Sayonara

Yes!   No more breathing treatments!   I never thought I would see a day come when I didn't have to hook up to these machines.  I have done breathing treatments daily since before I can even remember!  Last night Seth packed 'em up and moved 'em on out. Good riddance!
Trashing of all of my old medications has felt pretty marvelous.  While my body still has Cystic Fibrosis, my new lungs never will because they have different genes.

Do we even fully grasp yet what this means?
Hours and hours more per week of time.... !

Steroids.

Ugh.  Yuck.

Prednisone is one of the worst medications I have been on in my life!  That is saying a lot too because I have been on my fair share of medications.....
I have to stay on them though.  They help keep my body from rejecting my new lungs.  Over time the dose will taper down tremendously, right along with my chubby cheeks hopefully.

I lay awake at night.  For hours.
Mind racing
Can't turn my brain off
Thinking way too hard about things...

During the day I am rather hyper.  I really don't mind being hyper though -- Our days are jam packed.

A fun day is in the works for tomorrow!  A mini road trip to Sacramento is in order to visit my best girlfriend Tyanna and her brand new baby boy.  I'm pretty excited.

In other news, we are still not allowed to go home yet.  Batting my sad puppy dog eyes at the doctor didn't work.  Just kidding...  I didn't bat my eyes .... but we did ask, and they did say "no".  The doctors do say that I am doing well, but they don't let anyone go home before six weeks.  That's the minimum.
We got the A-okay to go home for the weekend though- which is terrific!  I'm looking forward to picking up Levi from my parents on Friday and spending the weekend together as a family.  At our house.

Three Weeks!

Thank God for three weeks with Leah's new lungs!  So far they are working well with her body.

...And thank God she finally got more than three hours of sleep last night too!  This has been an issue probably brought on by the prednisone and we've been working on it daily.

We have been blessed to be able to hang out this week and last with some friends affected by CF.  A sweet time.  Thanks Lindsay, Casey and Hope!

Another appointment tomorrow; we'll see what the doctors think of us.