"Dear family of my angel donor..."

We woke early for an Easter sunrise, adopting a beautiful tradition from a beautiful friend, but there was something incredibly important and special about this specific Easter and this specific sunrise.
The clouds were socked in, it was misting throughout the wee hours of the morning, and the rain began to really come down. We all huddled under our umbrellas and our blankets. She used the same umbrella for protection on that rainy morning as I had used that sleepless night in 2012 in the waiting area during that nine hour surgery. We wondered if it all might be for not, the sky darkened in agreement. We wondered if we should just finish our hot chocolate, call it off, and hope for the possibility of a lovely sunset. We started sharing stories of other sunrises and sunsets, stories of Travis.
Then, almost imperceptibly, the rain was gone—it was all coming down, then it was gone, and it was the quietest change. It took several minutes before anyone noticed. Once our heads were freed from the umbrella's shelter we could see above us and out in the distance a few silver–linings scattered around the sky. We all felt happy with "seeing the silver–linings" and decided to just be grateful with that, then... gold! Bright, white, shining, gold burst through and between the thick clouds and gold fell on the hills around us and kissed our cheeks.

We gathered together to take it in, our breath taken by the sight. Now, it was time to listen.

A while ago Jason sent a letter "Dear family of my angel donor", then a few months later we received a message "I think my brother might be Jason's angel donor". Those two greetings are what catapulted us to this highly anticipated weekend, when Debbie and Amy and Dustin flew to Texas and we had the honor of meeting the newest members of our family.
It was as if we had known them forever, and we loved them and prayed for them before we ever knew their names. Over shared meals, through our adventures all around Sea World, riding in the car together, meeting atop our hill for the sunrise, and FaceTiming with our families, we came to know these lovely people and Travis Jericho Tillett.
Travis, a tall, blonde, entertaining, beautiful sixteen year–old boy who just got his learners permit. Who selected to be a donor without a second thought. He adored his mother, he called her Chap, he watched over her and she him and they were partners for each other. They went through life as soul–mates and were spontaneous together chasing the sea and the sunrise and the big, bright, full moon. He went out of his way to brighten and better the lives of all those around him. He knew just how to make his sister, he called her Sweetpea, laugh and laugh until she cried. He was thoughtful and driven and excited to get a job to buy a car and finally be finished with braces. He was on his way to school at SUN tech one morning, mid September 2012, when he was in a fatal car accident... only a couple days later we received The Call. There were beautiful lungs, perfect for Jason, ready for surgery. We would receive the sweetest, most selfless gift.

In the days preparing and throughout their trip, Debbie (Travis' mom), Amy (Travis' sister), and Dustin (Amy's son, Travis' nephew), experienced SO MANY tender mercies, so many miracles and signs along their way. From things small and simple as finding many pennies from Heaven when they reached their hotel room and even as they received their boarding passes to fly back to Pennsylvania—to a patient Jason had in his chair a few weeks ago, who just so happened to be head of admissions at Sea World, who told him they would be honored to host us with free admission for our special visit—to the clouds bursting open and the light reigning down on us for a moment so utterly personal and sweet it's nearly impossible to put into words.

Easter morning the air was thick and fragrant with fresh rain, our hearts were full and bursting with the sun shining around us, and Jason pulled his stethoscope from his pocket, Amy pulled hers from her purse.
Debbie slipped it into her ears, Jason guided her hand to his lungs. Amy readied herself as well. Jason took a long, deep breath. Debbie closed her eyes. Listening. "... ... ... ... Travis. ... It's Travis! There he is! Ohhhhh... ... it's Travis."

We all wept.

God was with us during our time together. God was with us throughout this tragic and terrible and beautiful and painful and miraculous journey that made our paths to cross. And I promise you God was with us on that hilltop hoping for the sun to rise. And I know that Travis was there too. I think Travis was pulling strings and walking along with us for his family's whole visit to Texas and I think he was glad we all finally found each other.

God is good. And Christ is Risen. And because of this we can all hope, we can all find joy, we can all try and love and look up and reach out to others and do our best through this walk of life. And after this mortal journey is through we can anticipate a glorious reunion in the end. Because of our Savior. Because of Him it can truly all be ok in the end.

Until then—Travis isn't gone. Travis is everywhere. And oh boy! Do we love him, and love those who love him.

"He lives on in others who now see the beauty of a sunset through his eyes, hear the coo of a child through his ears, breathe the breath of life through his lungs, and feel the pulse of life that lives on in his heart. Travis is no longer with us... He is now everywhere." –an excerpt from Travis' obituary, written by a close family friend

a 32(.7) miler kind of celebration

Today was a good day. It started really early and included a 32 and .7 mile bike race (for Jason... who insistes the .7, which was neglected to be mentioned in the information page of the brochure, was very important). 

It was a celebration... It's been over a year since the double lung transplant, God is so good!! 

Jas is crossing his fingers he'll still have his legs attached to his body tomorrow morning. I guess the amount and size of hills were neglected to be mentioned in the information brochure as well. Actually, now that I think about it... was there an informational brochure? Maybe we should have looked into that a little further.

...and Jas still isn't sure I've properly explained how difficult this ride was, so here we go: It was an insanely hard ride with lots and lots of uphill and not so much downhill or flat—and at the end (after a quick congratulatory kiss) I had to help him half–tip over the bike so he could get off without falling on his helmet in front of his new friends. BUT he pushed through and would even do it again.

he says he's happy now and we can continue on...

Jas rode with Sharlie's Angels team for today's CF Cycle for Life event. Sharlie received a double lung  / heart transplant about 6 months before Jason received his double lung transplant. We watched and prayed for her and her family as they went through the long, exhausting process... Then she gave us words of encouragement and hope while we went through it ourselves. It was so wonderful to meet sweet Sharlie and her family in person and it was an honor to be apart of Sharlie's Angels.

There's something about CF, and something about lung transplants... makes ya family.  No matter who ya are or where you're from.

From oxygen tanks to bike races... so incredible. You both were amazing today! Well, probably most days—but today y'all went and made everyone cry about it.

Miracles do happen. They happen every day. It's our job to notice and be grateful.

Even if it's just the breath we take. Sometime's that's the miracle.

Home again and another cheap date to the local farmer's market

Our trip to the east coast went pretty well. Jason's lung function is back up to where it was before his crash in May, and he's feeling fantastic! But there was a complication with the bronchoscopy (when getting samples for the biopsy, the fellow snipped a pulmonary artery, resulting in a substantial amount of bleeding and no samples for any sort of testing... such a bummer. Jason's just fine, had a few yucky recovery days, but he's pretty much back to normal now) Sooooo we'll be heading back for another bronch in three months (instead of graduating to wait 6 months before the next follow-up)—and might be requesting a seasoned specialist for the procedure. TMI? probably. But just in case ya wanted to know... there ya have it!

More on the happy adventures of our trip later!

The day after we got home was filled with errands and laundry and a spontaneous date to the Fullerton farmer's market. We went right after seven, the sun was lingering in the beautiful golden hour and this week's band was full of good 70's hits and the fruit samples were delicious and the succulents were blooming... It was everything good. And we're happy to be home.

I've got a very small pot with 5 succulents in my kitchen, 3 of which died a very... natural... death. 

The 2 remaining, I'm afraid, are not far behind.

I've been told you're not supposed to be able to kill succulents.

So I guess that makes me pretty amazing. An inspiration really.

Hard and Far and Fast

Alrighty! We've had some scariness over the last little while...

Jas got an infection with a side of productive cough (the one that everybody and all of their children and all of their children's children have had this season).
Then he woke up at 5 o'clock Saturday morning w a fever and nausea.
Then he got another fever at 3 in the afternoon.
Then neither of us slept that night because of his nausea and retching and fever.
Sunday we hurried to the ER.

There we learned that Jas needed to be on 100% oxygen (and even then his O2 sats were low 90's), his blood pressure was scary low and he had almost no white blood cells. His body had lost all ability to fight the infection. He was septic.

Once his blood pressure was under control they moved him to the ICU where they worked on restoring white blood cells.

In a matter of 24 hours Jas fell hard—he fell hard and far and so fast.

On Wednesday he was well enough to move to the respiratory floor—where he was given the very room we called home for a couple months before we moved to NC. So that was a bit disconcerting, but they had painted and changed the curtains while we were gone, so we got over it.

Later we realized that one of his anti-rejection meds had most likely caused the dramatic drop in his white blood cell count, which started this downward spiral. Immunosuppression is over rated. It's another game of balance... and it's tricky, but I think we can figure it out.

This was the nightmare... this was the scary fear looming behind our heads since transplant. Actually we couldn't imagine all of this, it was bigger than any theoretical super infection our minds could think up. It was faster and it crashed him farther and we didn't even have a day. We didn't have ONE day to react before everything got crazy.

There was over a week of quality hospital time, including watching Ellen every weekday and the season premiere of So You Think You Can Dance. Dr. Randhawa and the pulmonologists at Duke teamed up to get Jas back on track. Jason's stats got better and better each day. Last Friday Randhawa did a bronchoscopy where Jas was intubated as Randhawa thoroughly cleaned out his lungs. And then he showered on Monday evening (it'd been a while). After all that he was feeling pretty good.

We were able to break him out of there yesterday, right on his birthday!

He's doing so much better, but not totally back to normal yet. Right before he left yesterday he did a PFT (pulmonary function test) and his lung function had dropped from 84% to 40%. So there is definitely some work and recovering to do... but the point is that he will be alright and he can get back there.

We have been so grateful for everyone continuing to care about us and asking if we're alright, if we need anything, praying for us. Thank you for your goodness and love.

Long Beach Memorial Hospital—sure they've got some pretty palm trees to make it nice and inviting, but truth is it's kind of a little bit in the ghetto. I've got stories about the sketchy Goodwill across the street and the creepster Panda Express a little ways down the road... But Randhawa and the CF team has been awesome and it's a little easier to go to LB than to the heart of LA all the time, so whatev.

Nope, None

Last night we received an email with Jason's test results from Duke.

No rejection. No antibodies. No infection.

This is wonderful news! We both feel like we can give a huge sigh of relief.

So happy and so so grateful.

It was quite a whirlwind trip (just 3 days, 2 of which were fully travel) and, thank the heavens, everything went smoothly. The recovery from the bronchoscopy on Monday wasn't fantastic (bronchs are usually bears), but Jas is feeling better today and back in classes.

We got to see some of our transplant buddies at the clinic. We also got to catch up with our Checketts friends and experience some delicious gourmet pizza done right, followed by a Pelican's Snoball each. These things made it into a pretty ok trip. We're happy we get to come back and see our Durham peeps... even if that means a full day of Duke stuff.
I finally got around to reading Edenbrooke this weekend. I read while on the plane on Sunday and then all up in the waiting rooms on Monday and then I was very sad by Tuesday when I found myself with no more pages left. It was one of those books where upon finishing all I wanted to do was call my sisters, my mom, my friends, anyone who might be interested, and tell them to get their hands on a copy! Someone could even borrow mine!—Yeah one of those books. Not the most brilliant writing, but oh I loved it nonetheless.

Now that we know there's no rejection at this time we get to wait until June before we head back to Duke for more awesome appointments and doctors and scans and waiting rooms and stuff.

I'll be on the lookout for another good book for that 8 hour day of travel. Suggestions are always welcome.

I dreamt I held you in my arms

You Are My Sunshine // Elizabeth Mitchell

photo from March 2012—funny, how things change in a year. also, reminder to self to take more pictures of us—together.

Jason had his first test and his first proficiency this week (both of which he rocked like a boss) and I was reminded how student wife life is... and it's not so bad. Schedule and routine. These are things that we once took for granted, things we ached for this last year. I remember lying in bed trying to sleep and wishing to myself for one ordinary day—where no one talks about health, no one worries about breath, people just go about the routine, talk to neighbors, accomplish daily tasks. The idea of this seemed so out of reach at the time. It was a dream I dreamt before sleeping. I'm not sure if the worry will go away, it's something to work on, but all of the other pieces are there. In fact, yesterday was so ordinary I almost forgot to take notice. Almost. 

Living the dream in this one bedroom walk–up.

Today we jump on a plane back to North Carolina for Jason's six month bronchoscopy and full clinic appointment tomorrow. It will be a very busy Monday. We're hoping and praying for no rejection or antibodies or viruses or greasy bad guys hiding in the trees (there are a lot of trees in NC).

We're also hoping for some Pelican's SnoBalls—because they're the best darn snow cones we ever did see.

and THAT'S a road trip!

We knew driving coast to coast (40+ hours) might be a little bit long. But we also knew that it might be fun too if we had the right amount of tunes and stories and jokes, and we did so it was fun. And long.

North Carolina is trees and lots more trees and we fell right in love with Asheville.

Tennessee and Arkansas is cuuuuuntry. I'm pretty sure 96% of radio stations were country music, but it just so happened that country music was exactly what we were looking for. We mostly listened to the awesomeness in our playlist and found ourselves in the company of George, Tim, Taylor, Garth, Trisha, etc, and they're nice country company.

Texas is flat. And it kind of felt like taking a giant, deep breath driving through the wide-openness. It also felt like sunset lasted about an hour longer than the usual and it sort of felt like being at the ocean, being surrounded by the flat, pink sunsetty abyss.

We found that New Mexico isn't exactly "The Land of Enchantment", but I met a nice man with no front teeth named Tio in Cuba, New Mexico who made oil paintings of football and mesas. I didn't have any cash on me so he didn't let me see his work, but if I had I think I might have thought about handing over a ten dollar bill. We chatted for a minute and he told me I was cool. I said he was pretty cool too. So that was fun.

The tip of Colorado was snowy and farm-landy, so it made us feel like we might be inching closer to home.

Moab and southern Utah is red and gorgeous, northern Utah is snowy and cold and surrounded by mountains.

And Idaho... Idaho is home.

(TX)

(NM)

(UT)

And in the morning we set out for home number two—California or bust!

Crazy Little Thing Called

Looks like we'll probably be packing or moving*, not really clear on which stage of the process, on Valentine's Day this year. But we'll be listening to love songs of all shapes and sizes, playing loud for all to hear, incase we feel like dancing. If things get really jiggy we might also wear our beautiful sequin glasses I picked up at Kroger. I heard the local German restaurant has a special Valentine's hazelnut macaroon—that might just put Valentine's Day of 2013 right over the top!

You Make Me Feel Like Dancing—Bee Gees

Feels Like the First Time—Foreigner

Just What I Needed—The Cars

*we get the "all clear" to relocate on 2/12/13, so we can't say anything definite until then. but our apt has been rented to new tenants after us, so regardless we will be moving.

to fix my broken brain

There are some things that we deal with that we don't really talk about, especially not on the blog—heaven forbid we get personal (that ship's got to be in the Indian Ocean by now). Well, writing can be therapeutic sometimes so tonight I am typing as fast as my brain talks to me and it looks like we might be in for quite the story time. Maybe someday someone might come across this and maybe it could be helpful.

Things happened that I can't really write about, some horrible scenes I wish I could erase from my memory. But there are other things that I think could use some fresh air and I'd like to let them out into the open...

.........................................................................................................

Yesterday I cried at the grocery store at the corner of 2% milk and cream cheese. There was a tiny baby nestled in his carseat in a shopping cart, sleeping so sweetly surrounded by Nilla Wafers and produce and tortilla chips. He was so little. His cheeks were chubby. His nose was a button.

I grabbed some milk, and made a left past whole wheat bread and another to the registers.

I walked my cart out to my car and, would you believe it—it was pouring rain.

I'm not sure this was about babies really. Sure, as benchmarks near or pass it's hard. Seeing people where we would have been if nothing had gone wrong can be kind of difficult. But then we realize it's alright, there was a different plan for us, and we have been so blessed through it all. And as far as babies are concerned, we have some hope for that in the future and that can be enough for right now. That's not what makes me cry when I see babies in the grocery store.

After some inner reflection I realized that even though things seem to be normalizing out for Jason's health and it looks like he's trending upward, life is still hard. And I might be a little bit broken. My brain doesn't feel the same. There is a portion in there that feels like it doesn't understand how to not be scared or worried or sad. It feels like I can't shed the wretchedness of our last year and start fresh and bright and bushy-tailed. It's possible you know—to have part of your brain feel happy and ok, and another, darker part feel tired and terrified and anxious. Trying to replace all of that fear with faith is a very hard part. 

Trying to transition from caregiver back to wife is more difficult than I ever thought it would be. It's a complete shift in thinking. This is something that nobody talks about, but for whatever reason today it's full disclosure. My brain struggles to go back to a romantic mentality when for so long it has been caretaker. Something to connect in my brain to rediscover feeling pretty and flirty and to see him as husband, instead of patient. Don't get me wrong—this experience has made our relationship stronger than ever before. And now I have my real husband again (for so long it wasn't really him in there, I wondered if I'd get him back) and we are dating again. We go to a matinee or to ice cream. We talk and we flirt. It was almost awkward at first, but it's getting better, easier—I just wasn't expecting this shift to be such a hard part.

And while we're being personal, I turn to food for comfort. During this year of hell I found solace in Swiss Rolls at 11 pm. I was so alone, even with friends near to help, I was alone, I turned to food. I was sad, I turned to food. I was scared, I turned to food. I was anxious and worried and upset and tired, food. I would come home from the hospital to a dark, empty apartment and I would fill the deep void in my chest with something full of carbohydrates. Every pound I worked so hard to get off came back, and they brought a lot of friends with them, resulting in a number higher than I have ever seen before. A year of terrible habits is hard to reverse. But I am willing to give it all I've got because Honey, being this heavy hurts. It makes me cry. It strips away my confidence if I let it. I am ready to let. it go. Something tells me that once I lift this weight off my body I might be able to find me again, and maybe some missing pieces of my brain. I'd like that.

Life changed in a year. In every way.

Including photography. My growing photo business came to a crashing halt and I put a metaphorical blanket over it because I couldn't handle it. Even writing a simple email took an hour or two, I couldn't handle it. The weight and the pressure of stress and anxiety at my neck, choking. Something I loved, something I craved, became something I couldn't think about without a racing heart, spinning mind, and very sick stomach. Then I would have to find that blanket and cover it back up. In the last few months as life started to become a little bit more predictable the weight started to lessen, and that blanket seems to be getting thread–barren and thin. I think pretty soon it wont be needed.

Christmas Eve there was a breakthrough. Without a second thought I had a senior shoot in Ohio for my sweet niece, Josie. And my camera fit into my hand like she always had before, like an extension of my wrist. It was natural and normal. It was even fun. And funk broken... eh, not quite.

This feeling normal thing is going to take time, isn't it? But it'll happen.
It looks like I might be getting my whole Jason back.


I just hope I get my whole brain back.

Nissen Fundoplication (stomach wrap around the esophagus)

We are two months out of transplant and a few weeks ago Jason seemed to have a breakthrough—he got on some pain medication that really helped him and his recovery improved greatly.
We have had some bumps in the road to be sure (very slight rejection, a very small amount of donor-specific antibodies, an old infection that grew in his old lungs lingering in his body and creeping into the new, etc) but with the help of Duke's fantastic team we have been able to get all proactive on all that shtuff to ensure it didn't develop into something more serious.
In fact, for the past couple weeks he has felt better and better each day—and last week he was even proclaiming he was "starting to feel like his old self again"!

So what did we do about that?? Why we packed a bag and scurried off to the bustling streets of New York City to meet up with my sissie and her husband! (I'll be posting about that weekend trip pretty soon. I hope.)

And then we came back to Durham and were welcomed by a full day of pre-op appointments yesterday and a Nissen Fundoplication today, with a side of another long, yucky recovery. Hip hip!
*the Nissen stomach wrap is a laparoscopic surgery to prevent Jason's stomach from refluxing acid and food into his lungs—this is to aid in preventing rejection

I spoke with the surgeon (Dr. Hartwig, who looks very much like a thin Clark Kent–Superman, and is probably the friendliest surgeon we've ever met). The surgery went very well. Took longer than usual because of some big artery they had to work around, but went well.
Then I went into recovery and saw Jas, who was doing good and very medicated. I happened to catch this conversation with his nurse man, "Hey, I really like your gray pants." Nurse man looked at his gray scrubs and said "'Preciate it." Jas just nodded his dopey little head and said "Yeah... I wish I had pants." The fact that he was lying there fully naked under his gown and blanket continued to disturb him for the next few minutes. Next he tried to "count the ways he loved me". Number one being "you have beautiful hair" ?  Number two, "you take real nice care of me". Number three "you love me". Number four "you're kind". Number five "you have bosoms to be envied" ??  (Emily Dickinson would be so proud)... and so on until he managed to get his hands on his phone and moved onto trying to navigate Facebook and read comments... now that is something I wish I had recorded.

And speaking of goofy Jason, I thought I might share a little treat I whipped up.
Earlier today, just before surgery.
*you can see the photos individually here

... and as they wheeled him away to the OR he was whistle-humming the Indiana Jones theme song... very loudly.

Now you see what I deal with? ;)

to be excited for

In the midst of the hospital and transplant fog there are some things that get lost or forgotten or put on the back–burner. Because we are so excited for the after–transplant chapter of our life we have compiled a list of adventures and everyday things we are so looking forward to.

Jas still has some more procedures to go (Nissen wrap and possibly another stomach procedure to help gastric emptying) and lots of recovering ahead of him. We spend a lot of time at Duke Clinic for appointments and labs and tests, and Jas has rehab at The Center for Living every day he isn't in the clinic.

We have a few more hills to climb, but all of this should lessen little by little over time and our lives should find some normalcy.

Our list, and in no particular order:

>> go on dates—like once a week
>> take a vacation/road trip
>> swim a lot
>> explore—enjoy where we're at
>> really celebrate holidays
>> sing
>> eat just like the average guy
>> go to the beach much more
>> visit Idaho
>> try invitro again*
>> ride bicycles at the beach
>> play basketball and frisbee and tennis and racquetball and catch
>> have a healthy, quiet, normal day
>> finish Optometry school

There is so much to be excited for.

...............................................................................................

*After we got to North Carolina and into the program we spoke with multiple people and specialists about the making a baby factor. It turns out women cannot have a baby after transplant, but men still have the possibility. If all goes well and he recovers nicely, the sperm should not be affected by the anti-rejection meds. In our situation, having to go through invitro fertilization, they suggest we wait a year post transplant to try try again.

So the answer is not no. It's quite a few steps higher than maybe. It's a very hesitant yes.
And that gives us hope again and that makes us happy.

(i still squirm at words like sperm. so... sorry for that)

"And now you know the rest of the story" said Paul Harvey

Aug 12, 2012

We had been in Durham, NC for three Sundays and our ward had been nothing short of amazing to us—welcoming us to the area before we even arrived and searching for ways to serve and befriend us the minute we came into town. Moving to, literally, the other side of the country was scary and hard (yes, we've been over this before) but finding such good people waiting for us made all the difference. Anyway, it was Sunday, we were at church, and a clipboard was passed around the Relief Society room for the annual Pig Pickin on Sep 15 (apparently this is an annual thing for a lot of people in North Carolina). What's a Pig Pickin? I didn't get a chance to ask, but I saw a blank beneath Baked Beans.
Ehh. It's in the middle of September. Jas will probably be in the hospital and I'll probably just have to call and say I won't be coming after all. And if not... I like Baked Beans. I'll get my mom's recipe.
I signed up.

Aug 28, 2012
Jason was notified that he was officially listed for transplant (you can read about that here).
That night I gave Jason a card with a love note inside.
When I saw this card I was struck by the symbolism of the phrase. It has since become our little family motto of sorts. "I love you to the moon and back."

We were informed that it wouldn't "be long at all". So we told our family and Jason's parents came the next day. After a week of waiting Brad (Jason's dad) went back to Idaho to work and Tami (Jason's mom) stayed with us in anticipation for the transplant.

Sept 11, 2012
It was in the afternoon and I was drying off from a nice, warm shower. There was a rap rap rap on the door and Tami's voice, "Geri, Jason's on the phone... It kind of sounds like it might be the call?" I finished drying and walked out of the bathroom to see Jas sitting on the sofa. This didn't seem like a normal "call" conversation.
Jason hung up the phone. It was a nurse wondering if Jason would want to participate in a study. There was a lot of "lung action" happening, so he would come to our apartment for Jason to sign papers as soon as possible. Once we had digested this news I realized I had been standing in the middle of the living room in my towel.
I put on some acceptable clothing. The nice nurse man came, said he wouldn't be surprised if we got a call later that afternoon or possibly the following day. Jason asked for the date as he signed the paperwork. "September eleventh," the nurse man said.
I gasped, rather loudly. "Oh. Sorry, it's just... that... I didn't realize... Interesting day."
For some reason I really didn't feel ok about a surgery on that date.
I shook it off and put on mascara.

Sept 12, 2012
There was an incessant noise interrupting my dreaming... a digital singing. It sounded like Apple's ringtone. The phone! It's the phone! What time is it? 250 am. 250 AM! I shook Jas, tapped his shoulder, "The phone! Get the phone!" He picked it up with a groggy hello, said some single or double syllable words kind of like: "Ok. Yes. Ok. I will. Ok. Thanks. Bye." We sat there for about four seconds.... Was this it?
We scrambled up to get ourselves together and shake off the sleep. I woke Tami (Jason's mom) and called my mom to let her know we were headed to the hospital.
The getting to the hospital is a blur of red stoplights and valet parking at the ER and a maze of hospital hallways. Once we got into the little room it was 315 AM and the prepping began. In between nurses and tests we dozed and "slept" in a very small, very chilly short stay room. 700 AM we still hadn't heard from the surgeon, after a very long night. Should I text Leah or Amy or Lindsay to let them know we were at the hospital and wouldn't be at the Pig Pickin Saturday? 755 AM we received another call. The surgeon, who was at the donor's OR, after testing and viewing the lungs had determined them not viable for transplant—the lungs were not good enough.
Dry run.
900 AM go home, go about your day as usual, try to take a nap and hope to get a call again soon.
Nobody passed out or had a panic attack... so I'd say that was a win.

Sept 15, 2012
Baked Bean aroma filled the apartment.
Nobody was in the hospital today, looked like we were headed to a Pig Pickin.
When we arrived I was much relieved to not see a rotating pig on a spit or one laid out on a table (I asked a checkout guy at Target and he filled me in on the tradition). Somebody told us this was "not a real Pig Pickin. Hopefully next year you'll get to see the real deal." I said "Yeeks." But the bbq sauce was fantastic.
There were lots and lots of questions about transplant stuff. When will it be? We don't know. How long do you have to wait? The average is 17 days, but probably longer, or maybe a little less... we don't know. How long will he have to be in the hospital after the surgery? Depends on the patient and how he does, we don't know.
There's not a lot to know in this game. Sorry. But thanks for playing.

Sept 16, 2012
We were almost finished getting ready for church at about 1:30 that Sunday afternoon. I heard a phone ringing, it wasn't mine. "Hey Jas! You're phone is ringing!" I found it on the table in the living room, caller ID said Unknown. Hmm.
Jason answered it. After only a moment I could tell this was another call.
They told us that the surgeon would be going to the donor's OR shortly, there was another transplant in progress at that moment (I guess these transplant things run in multiples), if Jason could get to the hospital within the next hour or two they would start preparing for transplant. Yeah yeah... we knew the drill.
I finished curling my hair. Jas took a bath. Tami packed us a sack of fruit and snacks. We all changed out of our church clothes and Tami and I put on our Team Jason shirts. We loaded our bags a second time and got in the car.
Once we got to the pre-op room we looked at the clock. 3:15 PM. Weird. The last time we were in a prep room I swear the clock said the same thing. We made ourselves at home with some Phase 10 and college football games. The clock kept ticking along. Jason filled out his Living Will (which I strongly suggest anyone going through a large surgery to do prior to the actual event). And there was more waiting. By midnight we had watched a few episodes of Storage Wars and were a little bit sick of waiting... At about 12:55 AM, in the middle of another episode of Storage Wars, Jason's phone rang.

The next part of this story will be told primarily with texts and FB updates—mostly because it's all a hazy blur for me now.

Text to family: Sep 16, 1:37 PM
We got a call so we'll head into the hosp in the next hr and we should know if the lungs are a go later tonight.... So no announcements yet—we'll keep you posted :)

Text to family: Sep 17, 1:00 AM
Just got the call from the nurse coordinator The lungs look good. It's a go! The nurse will come get him in a bit.

Instagram: @geriegbert

Jas is getting lungs tonight. And oh my racing heart... I love this guy. He's my favorite person.

FB update: Sep 17, 2:45 AM
Jas was just wheeled back to the OR. It will be avery long surgery (around 9 hrs)... We should get a couple updates throughout the wait.
>> as they wheeled him back on the bed all I could see was the top of his red hair and his hand from the wrist up as he waved and gave us a thumbs up. I knew his heart was anxious and racing, I knew he had to be terrified—but he was still my sweet buddy, being cute and funny as they took him back to the OR to begin something so huge... something we never could imagine actually happening. this shook me and I felt the room spinning and all I could hear was myself screaming inside my head. me and Tami hugged and cried for a minute, then ventured out into the waiting room.

Instagram: @geriegbert

So hosp lights never turn off. But I MacGyvered a magical floral hobo fort w the umbrella in my purse.
>> our friend Clark came to find Tami and I when he finished his shift that night (er morning?). he said he couldn't find us. I said, "Oh that's probably because I had a floral umbrella on my head." He said "I did see a floral umbrella... I didn't want to disturb whoever was under it." I don't know why, but this still strikes me as hysterical.

FB update: Sep 17, 9:33 AM
Update from Geri just now: Jas was wheeled back at about 230. They called me at 425 and said they had started the surgery. And just got an update from them "team is still working". So far so good! Keep on praying!
>> all of the updates were like this. I would get paged every two hours to go up to the nurse's desk and she would say, "You have a message from the OR." I would nod. "They are still working." The first time I didn't get it... I said "Ok, what's the message." "They're still working." "Ok, so what's the message?" "The message is: They are still working. That's the message." "Oh—ok." It was 6:30 AM after close to zero sleep and high stress—give me a break is all I'm saying.

FB update: Sep 17, 11:25 AM
Latest update: they are almost finished. Next update will be talking to the surgeon.

Photos taken during that last bit of waiting....

>> I believe I remember asking someone to pass me a Diet Coke. Wait. Yes. Yes I did. It was on Instagram/FB (and three days later the most awesome Relief Society President in the solar system brought us dinner... with a six pack of Coke Zero. Leah, if you're reading this, I heart you).

FB update: Sep 17, 12:18 PM
Update from Jason's sister: The surgery's done. His new lungs are in! Geri and my mom should be able to see him in the ICU in about 45 minutes!!!

FB update: Sep 17, 2:10 PM
Geri here: we just went into the ICU and saw Jas. He's still sedated and will be for about six more hrs. Not totally out of the woods yet... But the lungs are in and he looks pretty good to me. Should know more in a few hrs.
>> they tried to warn us before we went in there that he would be bare-chested, high temp, cold sweats and have a massive amounts of tubes coming from his body. Tami told me to picture the absolute worst in my mind so it could be better than that. I did, and therefore wasn't shocked at the sight. but it was still disturbing to see my man with tubes in the side of his neck, five tubes in his chest, tubes coming from the high upper thigh area (that part was covered, I saw them coming out from under the sheet), IVs in both hands, and a big one shoved down his throat. 

FB update: Sep 17, 9:41 PM
Geri again: We just left the hospital after seeing Jason. He looks so good and the nurses are excited that he is doing well. He is not so heavily sedated now, he is breathing on his own—once they get the epidural in for pain management they will be able to take out the ventilator and the central line. Hopefully by morning he will be sitting up in a chair and then up and taking a few steps. The sooner he walks the better.
So grateful for these lungs and watching his chest and belly rise and fall with a deep, full breath.
So grateful for a wonderful donor and fantastic surgical team.
So grateful for all of the encouragement, love and prayers—it has helped more than you know.
So relieved and can finally relax a little bit after a very stressful 32 hrs.

Sneaky ICU photo from Brad's phone via text: Sep 17, 11:00 PM

FB update: Sep 18, 12:34 PM
Jas is doing so great. His nurses are calling him their Rockstar. He's already walked a lot today and they're talking about moving him to the step down unit later this afternoon. Still so much recovery to go... But it's truly amazing he's doing so well up to this point.
>> I visited him in the ICU at about 9:15 that morning and by that time he had already walked 1500 feet. Everyone was doting on him and his dopey little self was sure enjoying it. When a new specialist would pop their head in the curtain and introduce themselves he would say "Hi I'm Jason and I'm doing really great! I just had a transplant yesterday." And they would smile and nod and say "Yes, I heard! You ARE doing great!"

FB update: Sep 18

Jas is out of ICU and in his room now. Doing miraculously well, super dopey from meds but super good. They did a bronch and said "the lungs look beautiful".

Text to family: Sep 19, 11:26 PM
Update is we walked like crazies today w/o any O2 (40 laps around the unit total). Got rid of 3 chest tubes (2 left). Brushed his teeth. Had a blood transfusion (the meds work on the bone marrow, so a transfusion every now and then is part of the deal). Cracked some jokes. Had a bronch, still looks good. Had a swallow test, passed the thick nectar drinks and the cookie—so now he can have thickened liquids (but no cookies cuz he didn't pass the pudding or the thin liquids). No diabetes so far. And now going to go to sleep.

FB update: Sep 20, 10:59 PM
Gerl here! Third day out of transplant was kind of hard, but he's still doing great. He can eat thickened liquids which makes this guy super happy (huge blessing). And he got the scary tube out of his neck, among a few other tubes in various places.... which is a plus :)
>>yeah, I spelled my name wrong. it had been a very long week. or a very long year.... either one.

FB update: Sep 22, 10:38 PM
Geri again: Just waiting on two chest tubes (there is still some fluid draining from the lungs) and we can break Jason out of the hospital! Plan is for Monday... but hospital plans almost always change. 
Jas has been recovering better than ever expected—today's PFT (pulmonary lung function test) was 67% (he was around 22% pre transplant) which is remarkable! And he walked 101 laps around the unit 

today (the prerequisite to going home is 20, 18 is a mile). He's sick of being in his room and antsy to move around... that means he's feeling pretty good and ready to get on out of here. Yay!

We really are seeing miracles everyday and so grateful for your support and prayers. Thank you again. And again and again.

Text to family: Sep 24, 4:48 PM
Outskies. He's doing good.

FB update: Sep 24
Jason is home tonight... and filling a giant pill box with new pills and not wearing any oxygen. Labs at 730 in the morning and back to rehab tomorrow afternoon. Lots of recovery to go. Bring it on!!

Instagram: @geriegbert

Look who's home!

..............................................................................................

Sep 27, 2012
We just got back from our evening walk and are about to turn on a movie, then we'll go to bed. No two hour breathing treatment needed. But not before a few more IVs and checking blood sugar and taking pills right on time and cleaning the cannonball wound. Every day seems to be a little better than the one before. We're planning on a few steps forward, a couple steps back.... But oh! How can it be? We thank our Father in Heaven every night for this blessing of life. We are so excited to no longer be waiting, but to be recovering and to live it.

"And now you know the rest of the story."

(If not familiar with him, or even if you are, here's a good Paul Harvey story.)

it rang

Jason's phone rang at 1:28 pm, Sunday Sep 16.

It was the call.

We stopped getting ready for church and started getting ready for a trip to the hospital. Once in the hospital Jason got prepped for transplant (lots of blood work, pee sample, signed paperwork etc). Then we waited... and waited and waited and waited... until 12:58 am when we heard the happy news that they had some beautiful lungs for Jason.

Now they are whisking him away for a very long surgery that will surely change our lives forever. It will be a very long surgery, so here's to a very long night! Cheers!

We'll keep the Team Jason FB page updated as best we can.

And I'll try to stop by here when I can steal a minute.

Thank you for your prayers and good luck wishes. We feel your support are so grateful for you.

We are keeping our donor's loved ones, whoever they might be, in our thoughts and prayers as well.

Please remember them too.

a week

A week of jumping every time the phone rings.

And feeling the strangest combination of emotions before going to sleep every night

Will we be woken in our sleep to be told to go to the ER? Will we have a good night's rest? Which one do I wish for more? What time of day is the best time of day for this crazy huge surgery? Will anyone have a panic attack before we can get them to the hospital (and you can go ahead and replace "anyone" with "Jason")?

Before, when talking to people about transplants, or reading their stories, we never knew... We never never never knew what was actually involved in the process. How could we know?

Maybe when it's all over we'll write a book or something (haha!)..... But not today, we're not done yet and we know there are still so many more hurdles before we can look back and say Holy moly. We lived through that?

Jason's parents came when he was listed so they wouldn't miss out on all the action. We're happy to have their help and support. And for now we're distracting ourselves with moving into our apartment (because our things FINALLY ARRIVED!!!) and dominos and puzzles and Sports Center/the RNC and editing photos and laundry. And jumping off my chair every time the phone rings.

Phase Two

Today I was thinking about posting about the awesomeness of thrifty shopping: case in point our super cool table we scored at Salvation Army or our bright blue chair from Furniture Follies.

But then we got this phone call that just seemed to be so much cooler than that....

Today, this very afternoon around 4 pm, Jason was officially listed for transplant.

So I think maybe we'll chat about those thrifty things another day.

Right now we'll celebrate with a nap and then maybe a crazy game of dominos, followed by packing a hospital bag for when we get another exciting phone call (hopefully in the near future).

Whoa.

And then there's the part where I get emotional...

First let me tell you that we are doing great. We made it to North Carolina and we're still kickin.

Jason is in Duke's pre-op rehab program and we have met with great doctors and had labs and tests—working our way to get on that list. We are confident in the transplant team here and grateful for the mandatory rehab. Jas' body is already getting stronger and more prepared for what is to come. And that's so good.

We have already met so many sweet people and made some fast friends. We're happy with our sunny little one bedroom apartment and have our routine that seems to work for us.

Things are looking up. We're looking up.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

It felt like hiking Mt. Annapurna, that whole part where we prepared for moving and then the actual moving and red–eye flight and that first little bit after we got here. No. It felt so much more impossible than that. I will spare you the terrifying, lonely, medicated details. All I can say is this; that time was probably the darkest for me. Crumpled on the floor by the bathroom door of our extended–stay hotel room, shoulders shaking and mascara streaming down face. It was a lot.

But then we did it. And now it's done.

On to the next.

But wait, before we move on... let me say one more thing: we love our Father in Heaven, we love our family, we love our dear friends, we love people we have not even met. We have been lifted and strengthened and supported by so so many. It is astonishing. Humbling. It makes me gush with tears whenever I talk about it.

And Steph... You're an angel. I miss you.

After that part I'm pretty much positive we can make it through everything else. And everything else.... is a lot. But do you see those hands there? They're strong little hands and they've got each other. And as corny as this might sound, together they can do anything.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<
>>>>>>>>>>>>>>>>>>>>>

1. because Sunday evening is for walks  2. because air mattresses make me yawn

There's more where that came from. @geriegbert – Instagram baby.

Updates can probably be found there. Or the Team Jason fb page.