ONE YEAR!

One whole year and I'm still here. Ha HA take THAT diablo! Yeeeeeeee!

Yesterday was my one year anniversary of my double lung transplant!  I know, I didn't write anything, I am a bad blogger.  Not to say I wasn't thankful, I am, I was just so busy...

THIS YEAR HAS BEEN CRAZY AWESOME!!  It definitely goes down in the books as one of the best years of my life, and that is saying a lot because I have had some pretty great years.  It is weird to think it has only been a year in a sense because it seems like a distant lifetime ago that I was sick.

They say it takes a village to raise a child.  Literally though it really does take close to a village to give someone a lung transplant.  From my great CF doctor, the CF team, the surgeon, the transplant coordinator, the anesthesiologist, the nurses, respiratory therapists, physical therapists the transplant doctors and I'm sure a bunch of other very important people that are slipping my mind at the moment.  It really restored my view of the human race as a whole, and made me realize that there is some good left in this crazy world of ours.
I am eternally grateful.

Yesterday my dad brought up to remember the donor's family and that a year ago they lost a loved one.  It was a somber moment, remembering my donor.
I am eternally grateful.

We had a little celebration last night at our house.  I had so much fun.  Most of my good friends were there and I just had a blast.  I get by with a little help from my friends (Actually A LOT of help) and the close friends that I have are more important to me than ever before.  I'm a lucky girl with really great friends.
I am eternally grateful.

And . . . last but not least :  Abba Father God.  I am thankful for this life he has entrusted me with... I am unworthy of it, but am so glad he sustains me and lets me live.  Not only has he let me live, it has been a year of enjoyment and blessing, fun and partying.
I am eternally grateful.

- - - - - - 

In other news . . .  

Seth and I have decided to pursue adoption!  We are very excited about this.  We are slowly working our way to getting licensed through the county.

We both totally have a heart for adoption and it has been an idea we have thrown back and forth since we first got married almost ten years ago.  There are so many kids that need a loving and caring home.  We believe adoption is biblical and not only will the child benefit from it, we will too.  

Weeeeell, things were moving along slowly/normal ... we still have a ton of stuff to do before we are anywhere near being licensed.  But wanna hear something cool?  Yesterday on my one year lung anniversary I got a voicemail on my cell phone.  It was about the possible placement of a two year old little boy!  (Which is exactly the age range/gender we are hoping for)  She said she wanted to expedite the process.  I don't know how much I am allowed to say on here, but eeeeeeeeeeeee!  

We don't know for sure if this little guy will be ours yet or not, but we do get to meet him soon and he may even get to stay with us as early as January depending on how things go.  

I just wanted to let you know so you could be praying!  Like I said... nothing is for sure but it is a possibility that we could be adopting very, very soon.

I think God has fun blowing my mind.

Mike & Rachel

A couple of weeks ago we had our family from Ireland come for a visit.  Seth's sister, her husband and their boy.  We only get to see them once a year at best... and we are always thankful they make the trip to come and see us.

Mike (our brother-in-law) is the pastor of a Calvary Chapel in Cork.  He taught at our church while he was here.  It was pretty rad - here is the link if you want to check it out.

http://ccmv.org/

Me

Lately I feel like I am rediscovering who I am.  That sounds cheesy, but I don't know how else to put it.  I think we all do it from time to time without even realizing it.  A few days ago I was listening to some blues music that I used to listen to when I was a child.  I realized that I still liked it and have similar taste in music to my seven-year-old self.  I made mention of this to Seth and he said something along the lines of we are still the same person we once were we just build upon and add tastes.  Am I that same person I was as a child?  Where memories blend with dreams and everything is kind of clouded over?
I didn't think so.  Two years ago I would tell you how absolutely different I was from how I was when I was young.  All of the pressures and struggles - I was definitely an adult.
Hmmm.  If we stripped all that away and had the luxury of being carefree I think we are more like the past versions of our miniature selves than we realize.  I feel like I was one sort of person as a teenager and then the last couple of years, someone else.  This has been such a significant year, and now I am recognizing old characteristics that I thought were things of the past.  It's like going back in time except without erasing the future.

And I am starting to feel more like myself now than ever before.

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/

Hey, I remember you!

I don't know why I haven't been writing lately.  No good excuse.  There is a season for everything I guess, and lately this hasn't been what I've been up to.  Skipped clear over October!  There are things sitting on my brain and my heart - good things, bad things, things I am proud of, things I am not proud of.  Life.  Things I'm not sure if I want to share with the 'world'.  Thoughts I have a hard time making sense of in my own brain.  I don't want to cast pearls to swine either.  Wait.  Did I just call you a pig?!?!?  I believe I did.  Ha  - that is not what I meant though.
You know that.

Things are going great.  No, they really are - I'm not just saying that.  We have done tons of things since my last post including a quick three day hospitalization and several awesome vacations.  I did try to upload a video after one of our trips, but the stinking website was giving me heaps of trouble.  So I gave up.  Then I forgot.

Last night we went up to see a show at the Great American Music Hall (I like that venue).  Margot and the Nuclear So and So's.  We went with my sister and brother-in-law.  Fun.  Today has been tough for me to stay awake.  I'm beat.  It was worth it though.

Maybe I'll go and try to upload that video again ....

Happy day to you.

Art by: Levi

Kindergarten

This morning I sent Levi off to his first day of school ever. That's right, he started kindergarten! My baby is of course no longer a baby, but grown up into a full-fledged kid!

Yesterday we had his orientation where we got to meet his teacher, see his classroom etc.  When we arrived I headed toward the kindergarten buildings, because naturally, he is beginning kindergarten.  I couldn't find his room number, and was told it was in the main building.  When we found the proper classroom and I started talking with the parents and the teacher I found out that unbeknownst to me he was in a K/1st Grade class!  I guess based on the knowledge they have of him from our application, the school decided that this was the best class for him.  There are 13 kindergarteners and 10 first graders in his class.   He doesn't go to lunch with the rest of the kindergarteners at his school during the kindergarten lunchtime, but instead goes with the first and second graders.  He doesn't go to the kindergarten jungle gym or have his classes in the kindergarten building.

This concerned me for a second, but then I thought about how absolutely smart Levi is, and that he also does really well socially.  I don't like to just brag on here, but Levi is a very bright boy, and has known the whole alphabet since he was one year old, and learned to tell time on an analog clock when he was two.

This morning when we arrived he found his cubby and jumped right in, just as if he had always done it.  I knew he'd be fine and do great.  I knew that I was probably more nervous than he was.  I stayed for the welcoming assembly, and then kissed his cheek goodbye and went home to an empty, quiet house.  The whole thing was a little bit emotional, but I didn't get misty eyed until I saw this note on the counter:

When I picked Levi up he said that the day had been great and he had already made friends.





I hope this school is ready for Levi! He is one amazing kid!

The flea

This past weekend we were vendors at the flea market.

(* Sidenote:  Half of my life I have lived in Southern California and the other half Northern.  I am split on what to call it - swap meet or flea market.  It's this little personal identity crisis that I have)

We have slowly accumulated quite a pile of unwanted junk.  We finally got together with Rebecca and Kyle to rent a space and sell.  Ever since before I can remember I have gone to the swap meet, but have never sold there before.  It was fun!  Don't worry . . . I wasn't pacing back and forth yelling "ONE DOLLA, ONE DOLLA, EVERYTHING ONE DOLLA" but I could definitely see myself doing it again.

Dollar signs appeared in my sister and my eyeballs as we were trying to figure out how to buy things at thrift stores and try to resell it at a profit, haha.  Also, Rebecca and I moseyed around to shop of course - it's a talent we share.  I found a few little nuggets.

Distressed drawers: $5

And everyones NEEDS a copper ship wall art right?  Right.

In other news - earlier today I had that doctor's appointment in Palo Alto that I was talking about last time.  ↓

They said my sinuses look perfectly clear, and they saw nothing really wrong with them.
Come back in a year.

Ahhh.  music to my ears.

Rejection Free

Okay, some good news!  Last week I had another bronchoscopy. (3rd, 4th, 5th one?  Who knows.  I have lost track.)

There is no more rejection!  Praise God for His mercy!

They found some bacteria in my lungs and almost put me on antibiotics for it, but at the last second decided not to, which led to me doing a little happy jig.  They think it may be coming down from my sinuses (which are still CF sinuses)  so I need to schedule an ENT appointment.  Yep, I had better go do that . . .

Our first carrot

Today Levi dug up one of the carrots from our back yard.  He washed it in the sprinkler (we re-washed it) and we ate it!

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/

Rebecca and Kyle's Wedding

Two weeks ago was such a great day!  The day my little sister became Mrs. Craw.  Their wedding was cute and super fun.  It was country themed and all of the guests were told to wear "country casual" attire.  People went all out dressing up from cowboy hats, to tight jeans to big belt buckles. 

It was at a mini western town called Long Branch Farms in Half Moon Bay.  We had the whole town to ourselves for the day, including the saloon where The Quick and the Dead was filmed.  

The church building was adorable.  My favorite part was that the whole front wall could open up on hinges.  It reminded me of a doll house.

I was so happy to be the maid of honor and have a front row seat to watching them exchange their vows.  I know my sister had been waiting for this day for a long time, and it was a blessing to watch it unfold before my eyes.  Their personalities are perfect for one another and compliment each other nicely.  I pray that their marriage will be totally blessed by God for years and years to come.

Rebecca was beautiful, as always.

Here is some of us girls getting ourselves ready before the wedding.  The very cool thing about the bridesmaids that Rebecca chose is that I happen to be good friends with them too.  We had so much fun together, and they are some of my favorite people.  I totally love them which made for a very fun weekend.

Here is a photo of the whole wedding party.  Levi was the ring bearer.  He got to wear his bright red cowboy boots.  He did a good job walking down the aisle and standing up front.  Throughout the ceremony he kept winking at the flower girl, his friend Mia.  She kept getting shy.  So. CUTE.

At the reception there was lots to do, including archery . . .

And dressing up in pioneer clothes . . .

and dancing.

We had to do the electric slide . . . at least once.

Rebecca decided that it would be a good idea to shove the wedding cake in her brand new groom's face.

But don't worry.  He got her back.

Congratulations Rebecca and Kyle!  I love you guys!

Two are better than one, Because they have a good reward for their labor.  
For if they fall, one will lift up his companion.  But woe to him who is alone when he falls, For he has no one to help him up.
Again, if two lie down together, they will keep warm; But how can one be warm alone?  
Though one may be overpowered by another, two can withstand him. And a threefold cord is not quickly broken.
Ecclesiastes 4:9-12

*** All of these wedding photos were taken by our friends at Aptos Photography ***

Just Shoes

Check out these cute shoes I scored at Crossroads.  They are Steve Madden.  I got to go shopping with my mom today which was nice.  We haven't done that much (as me being an adult anyway).

But as excited as I am to find deals and such . . . . shoes are not what I feel like blogging about.  Nope, it's not.  What I really want to write about is my sister's wedding.  Her wedding was so wonderful, so fun and such a special day.  Or I could write about her masquerade bachelorette party, or how much fun I had swimming with her and her bridesmaids after rehearsal, or visiting San Francisco with relatives Monday, or hanging out with friends on the beach this week and jumping off of the jetty.

You get the point.

But it is late.  Five minutes after midnight actually.  This is the first chance during this amazing whirlwind of a week that I have had to sit down for a decent stretch of time.

So for now I'll just blog about shoes.

Hopefully, someday soon I'll be able to sit and reflect on all the phenomenal and pure carefree fun I have been blessed to have.  Now is bedtime though!  Nighty - night!

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 . . . ."

Independence

I finished up my course of steroids.  Three days.  Outpatient.  No problem.  I'm not saying I particularly enjoyed it (because I didn't)  . . . driving up there three days in a row. . . . but, oh, doing things as an outpatient is so much nicer than being admitted.  Yep.

I didn't sleep, but that's okay.  I am sleeping again quite perfectly soundly now that it's over.  Whenever I am fully sleep deprived I am tempted to write blogs on here.  There's not much else to do in the wee hours of the AM when you are super tired, but yet somehow still wired.  I resisted the temptation this last course.  I'll spare you, ha.

So I'll hear the results about if I still have rejection after another bronch.  That should take place in the next few weeks.  Not on my mind right now though . . . I have been busy living, living, living - having fun and relaxing.  Spending time with wonderful friends and spending time just staying home.  Seth is usually more of a homebody and I am usually more antsy to GO.  This long weekend we were for the most part just staying home or doing small errands around town, but I enjoyed it.  Plus living in Santa Cruz on Independence Day is an experience of it's own.  No need to wander very far.  We rode bikes to get down to the beach, because as usual the roads were shut down and traffic was being redirected.  It's always a little intense, but there's nothing like it.  This year was actually the most tame I can remember. They are cracking down more I suppose.  Maybe we'll have to go down to Aptos next year.  I saw no fire dancers or hillsides catch on fire.  We did end up in some kind of outdoor rave/dance party where everyone was adorned in glow sticks and totally intoxicated.  Try pushing your bike through a crowd like that.

My sister is getting married this week!  AAAAHHHHH!  I can't believe it, time has flown.  I am so happy for her and am already antsy for her to start having babies, ha.  This week we have rehearsal, a bachelorette party, manicure,  wedding.  Y'know, the usual.  Except it's not usual because it's my one and only sister getting married - a once in a lifetime thing, so I'm pretty elated.

I hope it's okay with her, but here are a few pictures I took of my good friend's son.  He is adorable (so is his older brother) and I have been waiting to get some good shots of him ever since they brought him home from South Korea.

So cute, right?

Toy Story

Pizza, candy, soda, popcorn and Toy Story 3!

Bridgeport

Breaking News

So the news is in.  My rejection has gotten worse moving from A1 to A2.  Now that the rejection is more significant, we are going to try and treat it.  For the next three days I will be driving to Stanford for an outpatient infusion of high doses of steroids.  This is not easy, for many reasons.

Messes with my plans.
Messes with my brain.
Messes with my family's plans.
Messes with my cheeks.
Messes with my sleep.

and . . . . of course I have the lingering worry that it won't get better.  That's always there too.

Construction

Construction surrounding our house is still going on.  They are putting in a grocery store.  It's crazy.  Our walls are shaking like an earthquake.  Sometimes it is downright scary.  This is what our house is like:

Sick as a dog

Today I am sick as a dog.  I had a rough night, and woke up with a fever.  Body aches, and I feel totally out of it.  Seth (who is just awesome by the way) stayed home from work to take care of me and Levi.
He called the transplant nurse to let her know of my condition.  She said fevers can be normal after a bronchoscopy.  Greaaaaaat.  I guess  it is relieving to know that this is normal; but at the same time it's not!  Lame side effect!

I haven't felt sick like this for so long!  Fevers used to be a normal occurrence for me.  I used to have them so often.  It is kind of a mind trip to feel like this again.  I have hope that this one will go away though, since it was caused by the doctors messing around inside my lungs.

Until next time . . . . .

Another Notch

Bronch number two is now under my belt.  It was this afternoon.

Today I came to the realization I have spent way too much time in the hospital just by how many hospital worker friends I know.  I ran into so many people.  It was ridiculous!  I guess it really is my home away from home.  Seeing people in the hall, asking then how their cats diabetes condition is . . . .  yeah.
My friend Sheba was there (the one who was giving updates to my family during TX surgery)  and another RT (*respiratory therapist) who I am friends with helped the doctor during the bronch.
That happened last time too. (I knew the RT)
I passed by like 10 people that I knew today just walking to my appointment . . . .

Anyways,  man - I am beat up!  I'm tired.  I'm coughing (yes, coughing).  I was tired after my last bronchoscopy, but definitely more tired this time.  I'm coughing up bits of blood.  That is normal for two days, or so they tell me, but it didn't happen last time.

So on that note that I am SOOO tired, I'll say goodnight.  Short and sweet.

(and results shouldn't be in for awhile . . . I don't get them instantly)

día de los padres

I am blessed enough to have both grandfathers, my father and my son's father with me here on this earth.

My dad is a great dad.  He is a man after God's own heart.  He does a great job at pastoring our church, Calvary Chapel of Mountain View.  We are closer than ever now, and I am grateful for all of the time I get to spend with him these days.  I am so thankful for him in my life.  I am thankful that he has remained faithful in his life, and in turn affected our whole family in a very positive way.  He is a really good grandpa too.  Levi adores him, and they spend much quality time together going on "dude cruises."

Seth is not my dad, but I just want to mention him too.  He is a great dad also.  He takes such good care of us both.  Levi is a lucky kid to have such a hands on dad.  Seth will sometimes go lay on Levi's floor and build legos with him or they will wrestle in the living room.  (I love when they do this . . . gets out that aggression and energy that is simmering within those guys.)  I know that when Levi grows up he will look back and have lots of good memories with his dad.

Also, most importantly I am thankful for God as my Father. He is always faithful. He is the PERFECT dad, and never sleeps or slumbers. Talk about watching out for us.

A few months ago as Levi and I were grocery shopping, Levi loudly proclaimed in the very crowded produce section, "Isn't it cool how everyone has three dads?!"
Knowing everyone surrounding us could hear him and knowing what kind of city we live in (Santa Cruz isn't very different than San Francisco as far people's sexual preferences, broken families etc.)  it was a little uncomfortable.  Perplexed, I asked him what he meant. He replied that everyone has "God, Adam, and their own dad."  Very sweet, innocent and true.

Also I can't forget Grandpa, Pop, Shane, and Sheldon!  You are amazing and awesome.  I love you guys!

Paint me happy

Our house looks like a disaster area right now.  It's an absolute mess. I'm thrilled!  Why?
Because we are painting!

This morning I picked up bagels and mochas, we got the furniture cleared out of our bedroom, got music playing and started painting.  I'm pretty excited because I have been wanting to paint that bedroom for the past FIVE YEARS!  It's about stinkin' time!

We picked Keystone for the walls and Swiss Coffee for the ceiling and the trim.  Not the craziest of colors, but I think it looks pretty classy.  Seth was a professional painter for many years and definitely knows what he is doing.  It makes it nice and easy.  He tells me what to do, I do it, and it looks good.  It's coming along great.  It's been an ALL day project, and we can't even get to the trim today . . .

Happy Saturday!

Rejection

Well even though everyone I'm close to already knows the results of my bronchoscopy, I am well aware I haven't written a blog about it.  We have been away at a cabin with family for a week, and the week before that was crazy busy.

As it turns out I have slight rejection.  There are two types of rejection.  Chronic and acute.  The latter being the better one to have, if you had to choose.  That is the one I am experiencing.  The acute rejection runs on a scale of one through four, one being the mildest and four being the most severe.  I have A1 rejection.  This is not news I wanted to hear, but even since the beginning of my so called transplant journey the doctors have let me know that rejection is most common in the three to six month window of time.  I am still within that window, and so the news wasn't entirely shocking.  Since I have the most mild form of rejection that there is, we are hoping that it resolves itself and I have no change in any type of treatment.  Just wait and see.  I have to have another bronch (yuck) soon to see if there is any change.  If rejection still shows up in my next biopsy, then the doctors will discuss a treatment plan with me.

I am feeling decent, which after all is the most important thing to me.  I am thankful for that.  Surprisingly I am not too stressed about having rejection.  I can be pretty tightly wound sometimes, but the fact that I have rejection has been floating around somewhere in the back of my mind - not the forefront.  During our camping trip I was able to relax and have a good time.  When I am feeling okay it is pretty easy to forget about any looming health issues.  It's only when I start feeling pain or being tired that I am reminded.  Like I said I am feeling decent so it hasn't been too bad.

All that being said, these hiccups with my health keep me a little more reliant on God than otherwise.  Sometimes they are a blessing in disguise.  God's goodness has nothing to do with our circumstances.  He is what He is.  Never changing.  My life shifts like the wind, but God is the one solid rock that always remains.

Go Seth Go!

Seth won two awards at work!  Most new sales and most internet sales!  A co-worker of his snapped this shot while they were being presented to him.  Yay Seth!  I'm proud of him!

Oh, and by the way my bronchoscopy went pretty well I think.  I'm just a little tired now.  I'll get the results later.

So much going on!  I have been busy with my matronly-of-honor duties.  I am throwing my sister a bridal shower.  It is in little over a week!  I'm having it at my house, and I couldn't be more excited.  Planning these things are all sorts of fun!  I ordered my dress for the wedding yesterday and it shipped today.  Eep!  Also Rebecca, Brittani and I got together and had lunch and talked about wedding/shower stuff.  I went to the party store after and got plates, napkins, cups etc.  It's going to be so cute - I can't wait!  The wedding itself is in a month (they had a super short engagement) and I know the time will continue to fly by!

Also yesterday I jogged/walked from all the way from my house to the beach in the rain.  I ended up at the lighthouse.  It was absolutely grand.  Why is it that I can jog so much further while I am listening to pop music?  Or any music for that matter.  It was refreshing. It was just drizzling not pouring, but there was no one out.  I felt as if I had the whole world to myself!  I was trying to dodge the hundreds of snails that all decided to cross the sidewalk as the sun was setting.  I was doing pretty well but as it was getting dark, I accidentally stepped on one!  As it's shell got crushed so did my heart... I felt so bad!  When I arrived home I told Levi to come outside to check out all of the snails.  As soon as he stepped out he crushed one too.  Sad.

Last Friday was clinic.  My PFT's were down by 7%.  From FEV1 83% to 76%.  Because of my recent RSV and hospitalization they want me to have a bronchoscopy.  Having RSV can trigger an immune response in the body, which can lead to rejection of the lungs.  If you remember, I don't want my body to have an immune response.  I take pills to suppress my immune system, so that my body doesn't recognize my lungs as foreign and try to kick them out.  So the bronchoscopy is scheduled to check for rejection.  I'm trying to not think about it too hard.  Worrying doesn't add one day to my life.  I am nervous about the procedure itself though.  It is tomorrow.  Pray for me -- if you remember me tomorrow.  I will be partially sedated, and need someone to drive me home.  My awesome mom is going to watch Levi and then drive me back.  In my experience partially sedated procedures are the worst kind!  I'd rather be all the way blacked out or totally alert.  A few hours after my transplant I had a bronchoscopy, and I remember the whole thing very clearly.  Usually, in the past, they give me medication to make me forget.  Isn't that a creepy thought?  Medication that makes you forget what they did to you?  Yep, that's what I usually get but I don't know why I remember that one bronch.  They forgot to give me the forgetting medicine.  Haha

I have a new hair colour!  Platinum blonde!  I love it!  This is the second time I have done platinum... it's a fun colour to be.

That's all for now!  ... until next time...

Easter Skit

This is a video of a skit Seth and I were in on Easter morning.

Just now I told Levi to clean his room.  His reply was:

"I'm an inventor, and inventors never clean their room!"

Hahaha.  Nice try Levi!

Hello Old Friend

I didn't mean to neglect this little blog, but somehow I did.  Procrastination.  Laziness.  Not feeling well sometimes, and busyness.

Oh well.

My grandparents are in town right now, and we have visited with them the last two days.  This evening they watched Levi for us so we could go out on a date.  We went out to sushi and then strolled around downtown.  We were gone for a couple of hours, and when we returned Levi was doing the same thing he had been doing when we left.... playing with legos.  If that kid has someone to build with, he can play legos all day long.  No kidding.

In other more exciting news, my sister is getting married!  They got engaged last weekend.  They are going for a super short engagement of only six weeks!  She asked me to be the maid of honor.  I can't wait!  Kyle asked my parents for Rebecca's hand when we were all up at the lake.  (So I guess my parents have known for awhile.)  Their personalities are perfect for each other, and I am so happy for them!  I love you Rebecca and Kyle!
I have been SO busy since this weekend I haven't gotten to speak to Rebecca for more than like two minutes at a time on the phone, so I still haven't gotten to hear the story of how he proposed.  She started to tell me they were at the beach, and then I literally had to get off the line because my name was being called for an appointment.  So yeah, pretty sad.  I'm sure I'll find out soon though.  Maybe tomorrow.

Tomorrow we are going to head to the RV park my grandparents are staying at and swim in the pool there.  Should be lots of fun!

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!

Ham

A couple of months ago I took Levi to the park.  He took his scooter while I walked alongside.  At one point during our walk I said "Wait Levi.  Let me get a picture of you with your scooter."  All of a sudden he started striking all of these random, different poses.  I kid you not,  all of these pictures were taken in a time frame of under 30 seconds!  Um... SOMEONE is waaaay too used to the camera!!!! Haha

My son is such a little goofball.

My Upper Endoscopy

So I think that I have kind of been avoiding posting a real post on here.  I have felt crummy lately.  I have also come to the realization that I don't like writing about the hard times as much as I enjoy writing about fun times.  Maybe because I like to be the bearer of good news, instead of sounding whiny.  Or maybe because I feel bad, I just don't feel like putting energy into anything.   That might be the case, because I have been avoiding work this week like the plague.

Monday I went to Stanford to have a procedure done.  A full GI work-up.  I randomly get really intense sharp pain (worse than childbirth).  It doesn't happen that often, but when it hits, it is crazy intense.  It started back last year before my transplant.  They didn't want to do the procedure back then because I would be sedated, and the doctors didn't feel like I was healthy enough at the time to go through that.  So it got put on the back burner.  New lungs came first -- it was more important.  Finally, now that my health is better I was able to get the procedure done and be scoped.

That is how I spent lovely Monday.  Sedated.  Seth had to take off of work because I wasn't allowed to drive myself home.  I thought it was funny also that the nurse dude ( I really don't know his title) told me to watch out and to not sign any important documents, haha.

It all went well.  I think.  I can't really remember.  Yeah,  it did.  I'm pretty sure.  Anyway,  they put a scope down in my belly to look around.  An upper endoscopy I believe it is called.  They found inflammation, but that is all as far as I know.  I have to schedule a follow up appointment to really find out the nitty-gritty.  Before I had the test done, the doctors all seemed to think I had gastritis.
They threaded a tube from a machine through my nose down into my stomach.  I had to leave it there for twenty-four hours.  Then I had to drive back up there to get it removed the next day.

After my dramatic dog Chiquita gets a bath, we wrap her up in a towel and place her on our couch.  She sits there shivering, and won't budge for literally hours upon hours.  Sometimes all night.  She hunkers herself there in self pity.  She can't believe what horror just happened to her and she remains frozen in dejection.

That was how I felt earlier this week.  Every time I ate, sat up, laid down I had to press a button on a machine that was threaded through my nose and throat.  I wasn't allowed to shower (and if you know me, you know how much that bothers me).  Needless to say, I wasn't running around the house happily cooking dinner and caring for my family.  I sat, like my chihuahua, frozen and not wanting to move.  Every time I chewed or swallowed I could feel the tube tugging up and down my nose and throat.  It was pretty gross, not to mention very uncomfortable.  I also didn't feel like blogging, I guess.  But now that the tube has been removed, I have regained my freedom, and I feel much more like myself, I am happy to share the gross, gory, details with you all.  Ha.

Besides being somewhat of a baby about the whole tube-in-my-nose-thing I still have my lingering cold.  Or should I say cough?  The cold is gone, but I am still coughing during the night.  It is getting better, but very slowly.  So yeah, it just hasn't been the best week health-wise compared to others.  That is when I feel like hiding out, and waiting for the storm to blow over.  And it is.

How we roll

Roller Skating.  Yes!!

Dear Hospital

Dear Hospital,

I hope this letter finds you well.  Today I will be leaving you.  It is time I moved on.  We are just not the best for each other, and being around you makes me feel slightly sick.  I hope to not see you again for a very, very long time.  Try not to take it personal.  I'm sure it won't be too hard for you to part with me; there will be someone else to move in and take my place.

Signed,
Leah

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.

Bad News

The transplant nurse called me today with the results from yesterday's swab.  She confirmed that I have a virus.  ( I knew that already by how lousy I feel)  And then she dropped the bomb...

I need to be admitted.

I have one of the seven viruses that they test for!  Can you believe it?!?!  Ugh.  I have RSV (respiratory syncytial virus).  I remember hearing about that virus when Levi was a baby... it is common in little kids.

So this means I have to spend five to seven days in the hospital.  I am bummed, but more than that I am just scared of the unknown.  I have done the hospital thing before, but never as a transplant recipient.  I don't know how my body will react to these new medications.  I am hoping it will be relatively easy but I just don't know.

I was kind of taken aback and a little shocked by the news, especially since I have been feeling so well the last couple of months.  Weird how a little germ can just change all my plans.

Seth is going to take a few days off of work to stay home with Levi.  My parents might then take him over the weekend.  Right now I am just waiting to hear back from the hospital when they have a bed available for me.

Time crawls so much slower in the hospital, so if you feel so inclined leave me a comment or message.  It brightens up my day, and helps time to go by a little faster.  I would normally say to come visit, but when I googled RSV I learned that it is highly contagious.  I don't want to give anyone this cold...

Sick in the head

So yeah.

I caught the cold!  Boo hoo.  I have been sick for about three days now.  I don't feel horrible, just a normal run of the mill cold.  Levi had it much worse.  He had a fever, aches, coughing, runny nose, etc.  The whole nine yards and he was down for the count.  He just laid around, which if you know Levi you know how unusual that is.  He actually took naps... he barely took naps when he was a baby!  Seth is sick too.

So with newly transplanted lungs and colds you don't mess around.  I have to call the transplant clinic every time I get sick.  They then have me come up and get "swabbed."  So today I drove up to Stanford to have a very, very long little Q-tip inserted up my nose.

I need to take a little detour to tell you just how awful this little test is.  It sounds harmless, right?  Wrong.  Do you know how far back your sinuses go into your head?  They push that little Q-tip thing way back farther than you would ever think it could go.  They push it to the back of your head, or so it feels like it.  If you have had this done, you know exactly what I'm talking about.  If you haven't -- good for you.  You don't want it.

Apparently, according to my transplant doctor, there are about 300 cold viruses.  Seven of those 300 are potentially harmful to me.  They need to test to make sure I don't have one of the seven viruses that would cause me harm.  Better safe than sorry-- that's why they must test every time I get sick.  If I do end up having one of the seven I have to be admitted to the hospital for five days to be treated.  They give special breathing treatments and such.  Five days in the hospital is no biggie for me, but obviously I am hoping and praying that I don't ever have to do that.

The test results should be in tomorrow.

Stuffed Chicken

This isn't a cooking blog... nor do I want it to turn into one.  But I do cook.  I like to cook healthy meals for my family.  Anyways, I made stuffed chicken breasts for dinner tonight. I don't think I have ever made stuffed anything before.  If I have, it was so long ago, that I have forgotten.  Anything with the word "stuffed" always seems a bit intimidating to me to be perfectly honest...  I am way more comfortable cooking boring old casseroles or homemade bread.  This recipe looked yummy though so I decided to give it a shot and try it.

I used kitchen scissors to cut up the fresh organic baby spinach.

Sun dried tomatoes would have to qualify as one of my favourite flavors in the whole world.

My son Levi says he doesn't like cheese.  He eats it more than he realizes though, and he likes it when he doesn't know he is eating it.  He also eats it when it's on pizza.  Go figure.  I sometimes wonder how this kid who came from my womb doesn't like cheese.  That is a foreign concept to me.  My brain does not compute.  I love the stuff -- every kind of cheese I have ever tried, I have loved.

Hopefully he won't realize that this feta, is in fact, cheese...

The lemon was the fun part.  Because all I have to do is walk out to my backyard and pick one.  I adore having a lemon tree, I really do.  This one just started growing one year randomly.  A little gift from God I guess.  We didn't plant it, we didn't even know it was there for years.  Until one year it just pretty much came out of nowhere.  If I could have picked, out of all of the fruit trees to have I would totally pick lemon.  We go through the lemons like water.  Literally.  Because I add lemon to my water, and just drink lemon water.

Today it was rainy.  Look! The lemon is already partly washed! 

The recipe called for some lemon peel.  I was searching all over the kitchen for my cheese grater with no luck.  Seth reminded me that we had this miniature one.  The recipe only called for a teaspoon, so hey it worked!  (I still never found the regular sized one)

The miniature cheese grater is pretty cute, but not as cute as the little face behind it.

Pounding the chicken is my least favorite part.  The pounding was fun, I just don't really like touching the raw meat.  I deal though, and just wash my hands well afterward.  I used food storage bags to place the chicken breasts in.  It worked quite nicely.

If I made this recipe again I might chop up less than three cups of fresh spinach.  I crammed as much of the mixture into the chicken as would fit, and still had some leftover.  I really don't like to waste -- especially expensive ingredients.  Next time I think I would chop two cups instead of three.

So how did it turn out?  Pretty good I think.  Levi said it was gross *sigh*  but he said that before he even tasted it.  So yeah, not really a reliable source.  I thought it was really yummy.  Polenta is a little bland, but the stuffed chicken was flavorful enough to make up for it.  Seth said it was delicious.

Okay.  So here is the recipe in case you want to try it for yourself...

Stuffed Chicken Breasts

Makes 6 servings

6 boneless skinless chicken breasts

8 ounces feta cheese, crumbled

3 cups chopped fresh spinach leaves

1/3 cup oil-packed sun-dried tomatoes, drained and chopped

1 teaspoon minced lemon peel

1 teaspoon dried basil, oregano or mint

1/2 teaspoon garlic powder

Black pepper, to taste

1 can (15 ounces) diced tomatoes, undrained

1/2 cup oil cured olives

Hot cooked polenta

1.  Place chicken breast between two pieces of plastic wrap.  Using tenderizer mallet or back of skillet, pound breast until about 1/4 inch thick.  Repeat with remaining chicken.

2.  Combine feta, spinach, sun-dried tomatoes, lemon peel, basil, garlic powder, and pepper in medium bowl.

3.  Lay pounded chicken, smooth side down, on work surface.  Place feta mixture on wide end of breast.  Roll tightly.  Repeat with remaining chicken.

4.  Place rolled chicken, seam side down, in crock pot slow cooker.  Top with diced tomatoes with juice and olives.  Cover; cook on low 5 1/2 to 6 hours or on high 4 hours.  Serve with polenta.