Wednesday, March 21, 2012

A Brother's Perspective

Sharlie's Brother Dax posted his perspective of Shar's Transplant on his blog, Dirty Running. His words are moving and beautiful and we wanted to share them here.



I have written about my sister Sharlie in the past (here and here), and she received a double lung and heart transplant over the weekend. To read more about her, and to follow her progress, visit Sharlie's Angels on Facebook. She has been an inspiration to me and so many others. There was a lot of down time this past weekend as we waited in the hospital while Sharlie underwent her surgeries and I had a chance to write some of my thoughts down, and while personal, I wanted to share them here in hopes that her story continues to inspire others. Thank you for reading.

I don't like hospitals. They are big, industrial, generic places, unfeeling, too clean, too many fluorescent lights, too much sickness, tired nurses, and bad memories. I dreaded going, but when I arrived at Sharlie's room, it was like a church, quiet, light and calm. I have spent many hours in hospital rooms with Sharlie, but none as important as Thursday. After a late night call and a frantic ride through the night from San Diego to Palo Alto, past swerving big rigs and methed up drivers drifting too close, pushing me to the shoulder, and too tired to correct as I listened to the hum of my wheels on the graded road.

Once at the hospital I found Sharlie's room, full of family and her high school friends. Suedy and Jessica, the same friends that have been there through the years, always bringing the party to Sharlie during her long hospital stays, making sure she never missed out on any of the junior high and high school fun. My mom was there along with my brother in law, Ryan, and everyone was smiling, calm, and waiting. Sharlie sat on the bed, soon to be wheeled down the hallway, to the operating room where her heart and lungs would be removed from her body and a stranger's organs put in their place. A family has made the decision to give this gift, the most generous gift of life to a complete stranger, and I hope they learn about Sharlie and her remarkable story and that it comforts them, because I know Sharlie will honor this gift as a living and breathing testament of gratitude.

I can still feel this hug.
Me, Sharlie, Mom, and Ryan. Pre-transplant.
Sharlie was the calmest person in the room.

The surgery went well. It was long, but there were no serious complications and after the final update from the surgeon, I had the urge to hug him, but I just clapped. It was all I could think to do for this artist.

The next morning we were told that there was internal bleeding and that Sharlie would have to undergo another surgery to stop the bleeding and remove the blood that had pooled beneath one of her lungs. It was another long procedure and as I sat in waiting room I noticed a mother and daughter, older, with matching red eyes and wrinkles being laid as they waited for a son or husband or brother. I would occasionally catch glances and we would look at each other, bonded by this waiting.

The doors to the various operating rooms would open loudly and doctors, nurses, orderlies, would walk through, all with the look of people going about their normal jobs as we wait with expectant eyes, searching for some sign, a smile, satisfaction, a worried look, anything to betray what is going on behind the heavy doors with signs and big red capital letters that screamed "no entry." These workers are used to the expectant waiting room looks and avoid eye contact, not wanting to give false hope, or hints of failure.

I walked the halls and looked at the art, most of it standard hospital art, landscapes, the sea, and flowers, but there was a series by a Russian artist, Ilya Kabakov called "The Flying Komarov" and this series was meaningful for me, or maybe I was just searching for some meaning. The series of drawings stretched down the hallway and the first few look like people jumping off buildings, but then as you continue down the long hallway, you see that the people are floating, flying, couples holding hands higher and higher, disappearing in the clouds.

That morning, they rolled Sharlie down the hall, machines, tubes, bandages everywhere, still under sedation, looking lifeless, bleeding near her lungs. The initial transplant went well and this was just one setback, and there will be more. This is going to be a long healing process, and Sharlie will need to fight, but she is strong. The previous evening the joy of the new organs and successful transplant rippled through the waiting room, but the reality is that there will be new issues, post transplant issues, and struggles as her body tries to make these foreign tissues, cells, muscles her own. I watched as my mom, my sister, and Sharlie's husband kissed her as they rolled her into another surgery. I don't like seeing her this way, sedated, unconscious. I need to see her soft smile, her calmness reassuring that everything is going to be good. Her faith, big enough for both of us.


It was beautiful out, sunny and cool, and I had to get away from sitting, from the lights of the hospital. I had to stretch my legs out, so I found some nice trails near Stanford in the Arastradero Preserve. I changed to running clothes in my truck, trying not to flash the van-load of senior citizens who had parked next to me. I followed a trail along a creek as it narrowed to shady single track and I ran as fast as I could, stretching my lungs out in some sort of glorious punishment.

Trail therapy

I left Saturday morning, but before the drive back to San Diego, I was able to spend a couple hours by Sharlie's side as she woke up from the cloud of anesthesia. Her eyes were brighter than the previous night, her skin was glowing and her breath was steady and deep. We talked that morning about the donor and how grateful and sad Sharlie was, and how in her mind and prayers she always used "she" when referring to her. We talked about the coming months, the healing and the strengthening and how for the first time in her life, she will be getting stronger. We talked about the challenges and bumps in the road that will require much strength and dedication, and I can't think of anyone who is better equipped to deal with and overcome the challenges. There were words said that morning that were so special to me, words that I will never have to write down; they are written in my heart.

Now, my heart is full with gratitude for so many people who have helped Sharlie on her journey. I am so grateful to the surgeons and the transplant team at Stanford, giving life, doing the work of gods. I am grateful that Sharlie will be staying in Los Altos for a while. It is a beautiful place with hundreds of miles of tree-covered trails and I can see her healing as she explores the area.

Before Sharlie went into surgery, my mom asked her what she wanted to do with her new lungs. She said, without hesitation, I want to run with Dax. And this piece hasn't been about running, but for me it has everything to do with running. When I picture Sharlie in my mind, I see her running, and as she was wheeled away for her transplant surgery and as I whispered be strong, I love you, you're amazing, you're my hero, and gave her a final hug, she whispered see you on the trails. And I do see her on the trails, smiling, stretching her lungs, laughing, racing her young son to the next tree, and dropping us all, her spirit dwarfing the giant redwoods.

Tuesday, March 13, 2012

She's waking up!

Sharlie's not quite ready to start blogging again.  I thought I'd post the Sharlie's Angels facebook updates from the night she woke up and a few pictures. There are some of us waiting, we called ourselves "Team Sharlie." The rest are from the night Sharlie first woke up from her transplant.  Sharlie doesn't have any memory of the night she first awoke, but we all do.  There were many tender, special moments.  

Here are the updates: 

Friday, Feb. 17, 6:04pm:
Sharlie is awake! She's still quite out of it and hasn't been extubated yet, but she is awake and can blink on command. I spoke to her and filled her in on everything that's been going on. She began to cry when I told her about the incredible support from all of her Sharlie's Angels on Facebook. They've significantly reduced the amount of oxygen she's on and is responding well. Life. Is. Beautiful.

Friday, Feb. 17, 10:28pm:
Sharlie's first words....."I love you"! She is fully awake and can't stop saying thank you! Her donor came up in the conversation and she immediately began sobbing and saying, "I'm so grateful, I'm so grateful, I'm so grateful." She is sore and uncomfortable, but is doing great. Joy.

Here are the pictures: 


This is how we knew Shar's surgery status.

On her way to ICU after Surgery!

Waking Up...

Holding Best Friend Suedy's hand.

Our girl and her equipment!

Tuesday, March 6, 2012

An Update from Mom...

This is Shar's mom, Collette; grateful to add to the record of this incredible journey.  In the early hours of the morning on Saturday, February 18th, I gave in to my insomnia and wrote the following update:

Dearest Friends and Family -

It is early Saturday morning, February 18th.  I just realized as I typed that sentence that 39 years ago today I was in labor.  My oldest son, Dax was born in the early hours of the morning on February 19th and it took me over 24 hours to bring him into the world.  How is it possible that was 39 years ago?

Truly, I feel a bit like I've been in labor over the past couple of least from what I remember, the pain the anguish, the doubt, fears and then the faith and hope and the ultimate unspeakable JOY!  Yes, from what I remember all those years ago, the past couple of days has been quite a bit like labor.  Sharlie is re-born!  She lives; she breathes; she smiles; she cries; she squeezes our hands and she whispers over and over again with tears rolling down her cheeks, "I'm so grateful!"

I can't begin to describe or express all we've witness over the past couple of days.  There have been sacred miracles too profound to speak about along with laughter than doubled us over.  The range of emotions has been staggering.

I know many of you have been following on Facebook so you've seen pictures and read updates.  Thousands of friends from around the world are following Sharlie's story.  There is something about this exceptional woman...she inspires everyone, especially me.

I was awakened early yesterday morning with a call from Ryan telling me the surgeons had determined Shar needed a second surgery - that blood clots were filling the cavity of her lungs and compressing her new heart.  As my daughter Chelsea and I raced to the hospital we pleaded with our Father in Heaven.  Please!  Not again...this can't be.

During the night Sharlie had needed blood transfusions and there was a "bleed out."  I don't understand all the terminology, but two litres of blood had seeped from the closed incisions, pooled and clotted.  These clots were removed and her new organs were bathed in an antibiotic solution and recauterized in several areas.  The second surgery was a resounding success.

We waited.  All day we waited as she was weaned off the ventilator.  We took turns going into the ICU to stand with her, to send her our love, to hope she would borrow from our strength and to simply feel the Spirit in her room.  We spoke with the surgeons who came to check on her - and we learned amazing, miraculous details; some of which I will share later.

And we bonded with each other.  There is something very special to be said for having your children with you as you pray and wait and reminisce and laugh and cry.  How grateful I am that Dax and Chelsea could be by my side.  Even Zak - who is in Logan for the funeral of his father-in-law - was there with us in his own special way.  We called or sent messages to him every hour.  Zak was very reflective when I spoke with him late last night.  He had just come from the viewing...seeing his beloved father-in-law in the casket...and knowing that at the other end of the spectrum his little sister had just been given a second chance at life.  The circle of life.

So much I want to say.  How I wish I could express the feelings of my heart to the donor's family.  Someday, I hope they'll meet precious Shar.  That they'll know that through their grief, so much light and life came into the world.

Can I just try to take you to Shar's little cubicle as she woke up?  It was, without a doubt, the most spiritual experience of my life.  We were warned by the ICU nurse that they would know she was coming to because she would display signs of frustration and aggression.  She will begin to feel the pain of the tube down her throat, we were told.  She will be confused about where she is...but we need to discontinue the pain medication for awhile so she'll feel all that - and fight to breathe.  It was all explained to us so we'd be aware of what was happening.  By the way, Sharlie's ICU nurses are they've all been.  And her surgeon!  I love him!  But...more on that later.

None of what we'd been warned about occurred.  After Shar was weaned off the ventilator, when it was clear she was regaining consciousness; she was as peaceful, calm, beautiful and angelic as I've ever seen her.  There were angels.  We'd ask, "can you hear me?"  And she'd try to flutter her eyelids.  We'd hold her hand, and she'd squeeze it three times, which is our code for, I love you.  Her first words to each of us - "I love you!"  As the nurses and doctors would attend to her...she would try to focus on them and then she'd whisper, "Thank you."  When Ryan held up his iPhone with a recording of Harrison giggling, tears flowed down her face..."I love him so very much!"  Then, for nearly two hours...before they finally told her she needed to get some rest and we were all sent home to do the same, she simply said, over and over and over again..."I'm so grateful.  Heavenly Father is taking such good care of me."

My tears are flowing as well.  Where do all these tears come from?  I should be dry by now!  I am so grateful.  I want each of you to know I love you.  Ryan has been amazing and I know he and Harrison are the primary reason Sharlie fights for her life.  Ryan's parents - Terry and Linda - oh, how incredible they've been.  And of course, my precious husband Ric - an absolute rock for me!  And Lexi, my precious angel Lexi...ever near.  Miracles!  So many friends and family lifting, sharing, reaching out in so many ways.  You should see our refrigerator!  Paige - our sweet friend who has become family explained it well.  Mormons share their love through calories!  This is a journey we've traveled together and there is still a long road ahead.  But bring it on!  My daughter is alive - and breathing.  One Hundred Percent oxygen saturation.  Can you imagine what I feel when I see that "100" flashing on the screen next to her bed?  How can I express the emotions of my heart.  It is so feels as if at any moment, it will burst.

I'm off to the hospital; but simply wanted to thank you all again and express my love to you.  Please forgive my scattered thoughts.  Someday, I'll get it all out.  For daughter awaits; alive; and I'm so very, very grateful.



Sunday, March 4, 2012

Operation New Lungs and Heart! Feb. 16-17

Here are the Sharlie's Angels facebook updates from the days of the surgeries.

The first update on Feb. 16 at 11:47 am
They've begun. The lungs/heart are a match. Now we pray and wait and pray.

Feb. 16, 2:41pm
UPDATE: The surgeons have successfully removed her old, well used, and well loved heart and lungs. This step was one of the significant hurdles given how compromised her chest cavity had become after her right lung collapsed back in high school. We're being told the new heart and lungs look beautiful. All is well.....all is well.

Feb. 16, 3:57pm
UPDATE: Shar's new organs are in place....her trachea and heart have been sewn in. Her lungs are next. Apparently they're on the large side.

We've learned the donor was an adult. We anxiously await meeting the donor's family to share our condolences and gratitude. We hope their pain can be lessened knowing their loved one gave life to another. I can't think of a more appreciative recipient.

Feb. 16, 4:34pm
UPDATE: All of her organs have been sewn in. Her lungs inflated "perfectly". Her bleeding is better than typical CF transfusions yet. The procedure has been smoother than they believed it would. Our next update will come from the surgeon after it's over....believed to be a couple hours from now.

Feb. 16, 7:10pm
Success! The head surgeon just came out and gave us the great news. Her heart is functioning well. Her lungs are already up to 50%, a level she's never been at before. They believe her lung function will rise as she heals. We'll have a better idea about the health of her new lungs shortly. We were able to see her for a short moment when they wheeled her out....she looked so peaceful. We'll be able to see her soon. We're so thankful for your love and support.

Feb. 16, 9:27pm
Sharlie is resting comfortably in the ICU. They'll keep her on the ventilator till about 6am tomorrow at which time she'll breathe on her own for the first time. She'll be able to converse a bit and, I imagine, shed a tear. 

Feb. 17, 7:39 am
Sharlie started bleeding around 2am last night. She was given transfusions and then a med at 6:30am. The med helped slow the bleeding, but an X-ray showed a pool of blood on the right side of her chest cavity. This pool of blood means she needs further surgery. They are taking her back to the O.R. as I type this. 
I'm receiving tons of information, most of which is difficult to process because I don't have a frame of reference. I keep asking "How worried should I be?" and "How common is this?"
Her surgeon said we shouldn't be overly worried and that this is somewhat common, but this is a reminder that this will be a long road with potential setbacks. We're not completely out of the woods yet. Please continue to pray.

Feb. 17, 10:52am
The second surgery was a success. The source of bleeding had closed by the time they opened her up. The pooled blood was removed and they made sure there were no other sources of bleeding. The surgeons are very pleased with what they saw and how it went. They hope to wake her in a couple of hours to breathe on her own. Progress.

Feb. 17, 12:41pm
We just visited with one of Sharlie's surgeons at her bedside. He called her new heart and lungs "pristine". They had to turn down her oxygen while we were in there......she was providing more than they thought she would be:) She'll be extubated/awake in a couple hours and they'll have her sitting up before the end of the day.
“Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles.”