Donate Life!

April is National DONATE LIFE Month!

On my 33rd Birthday, a little over a month after my double-lung/heart transplant, Ryan and I visited my well used, well loved and very diseased organs. I was so grateful they had fought so hard for me but also so grateful that I had beautiful new organs sustaining my body.

I know I haven't been an active blogger for a long time but in honor of National Donate Life month, I wanted to share some thoughts about my donor with you. People often ask me if I know who my donor was, if I know anything about them or if I have been in contact with their family.

There are very strict privacy policies with organ donation and there is a certain protocol to follow. First, the organ recipient can write a letter to the family and send it through the hospital to the family. If the family wishes to respond or contact the recipient, they can do so. I was never given a name, an address or any information whatsoever about my donor or their family. 

I chose to write a letter of gratitude to my donors family. I had absolutely no expectation of a response and did not write the letter to get a response, I only wanted to express my love and appreciation for the gift I had been given. I pondered what I would say in my letter every day, but waited until I felt prompted that it was the right timing for me and for the family to actually write the letter and send it. 

A few months after I sent the letter to my social worker at Stanford, I got a call. I had just walked in the house, followed by Harrison, and my arms were full of grocery bags. I didn't recognize the number on my phone and debated about picking it up but felt I should. A man with a hesitant and kind voice asked for Sharlie. I responded that I was Sharlie and he told me that his wife had donated her heart and lungs to me.

It was a beautiful, but very difficult call. I wept for hours after hanging up the phone. I was filled with gratitude and also such deep sadness that this precious woman was gone. I wanted above all to respect the privacy of this sweet family so I did not ask a lot of questions but simply let the man tell me about his wife. 

I think about her often, the woman whose heart beats inside my chest and whose lungs fill me with oxygen. My donor's husband told me that his wife was a rower. He said I may get the urge to wake up at 4:00 in the morning and start rowing on a machine because that is what she did every day. I row several times a week now, nearly every day and it is a prayer and a meditation. Many times while I have been immersed in thought while my body fluidly rows, tears have fallen down my cheeks. Maybe others in the gym think I am crying because it hurts so good, but it is really just my thankfulness leaking out my eyes.

Before this National Donate Life month is over, I urge you to consider becoming an organ donor. There are some misconceptions about organ donation. Find out the facts! My donor's husband told me I should never feel guilty or unworthy that I am here and his wife is not. He told me they had discussed organ donation and both decided that if anything ever happened to them, they wanted to give the gift of life. He told me that his wife would be so happy that I was living an active, joyful life. What a generous gift, a gift I will never be able to repay, but a gift I will strive to be worthy of every day by living my best life and loving every breath I take. 

Below is the letter I sent to my donor's family. I did not intend to share it, as it is very personal. However, if it inspires one person to become a donor, it will be worth sharing. 

 

To the family of my organ donor,

It is the night before Thanksgiving and I simply can't go to sleep without writing to you. I have struggled to know how to go about composing this letter, worrying I won't say the right thing, that my words will be inadequate, or that receiving this letter will only be a reminder of your loss and cause you further suffering.  However, after all these months, I must attempt to express my profound gratitude to you. There is suddenly an urgency and I must not delay actually penning the words that have been mulling in my head and in my heart since the moment I woke from my double lung/heart transplant on February 17th.

I was born with Cystic Fibrosis in 1979 and have never known the ease of taking a deep breath. I know it's not normal to be keenly aware of pulling in enough oxygen with each inhalation to sustain the body, but that is how I survived. I willed my lungs to keep breathing, to keep fighting. Despite having one of my lungs completely collapse in 1997 and several other complications, I beat many odds. I remained ever hopeful and have always been filled with a love for life. I was married in 2004 and we were miraculously able to have a baby.  My lung function hovered dangerously low but my health stabilized. Being a mother is my purpose and filled me with a ferocious will to live.

Because Cystic Fibrosis is a degenerative disease, despite my vigorous efforts to slow the progression of my lung damage including hours of treatments every day and frequent hospital stays, I reached the point where my doctors told me my only option to live was getting a new pair of lungs. I required full time oxygen supplementation and was growing very weak.  Taking care of my son was becoming increasingly difficult.

I was accepted by Stanford for transplantation. I wanted to live. I was conflicted though. Even though I didn't know you, my thoughts were with your loved one and with you. From the minute I was accepted by Stanford for transplant and was declared active on the waiting list, you were on my mind and in my heart. I ached for you. When we received the call informing me a donor match was found, my husband and I fell to our knees. We fervently prayed that you would feel comfort and peace and that you would somehow during your despair, feel the enormity of our eternal gratitude and love for you.

These past nine months have seen the fulfillment of so many dreams. A year ago I couldn't walk up even one step without having to pause to catch my breath and now everyday I can chase my son up the stairs! I am able to volunteer in his kindergarten class twice a week. I asked him recently if he remembered when mommy had to wear her oxygen and was always super tired and he looked at me, smiled and said he didn't remember that. His whole life will be different with a mom who can keep up with him and give him the experiences I always dreamed of giving him. A few more dreams realized were a recent trip to Paris with my angel mother for the first time. As I climbed the steps of the Eiffel Tower, I wondered if part of me had been there before. I was also able to complete a 32 mile bike ride to raise awareness and money for cystic fibrosis and I ran my first 5 K alongside my older brother and husband. My world is completely different. I love my new lungs and my new heart. They changed my life. They saved my life.

Not a day goes by that I don't think of you and send you love and gratitude. I pray for your loved one every day as well and will strive to live worthy of the gift I was given. I hope that they can look down on me and see that I am not taking one breath nor one heart beat for granted. I hope they know that everyday I will try to find ways to lift others, give freely of myself, and be generous with my time, my love, and my means in their honor. I feel an incredible responsibility to live up to their legacy and it is a responsibility I don't take lightly.

With love and never ending gratitude,

Sharlie Ross Kaltenbach

2012 - Miracles and Memories (Part I)

Part of me regrets not blogging this year because it was such a momentous year for our family. However, I just wasn't ready. The thought of articulating my feelings about everything that was happening was too overwhelming and I needed time to process.

I don't know if I'll ever be able to fully process the events of this year though and I miss blogging so I've decided to start fresh and continue the tradition of a "Year in Review" post. I feel like this will give me a fresh start and allow me to continue recording our family's experiences without worrying that I have so much to catch up on!

One of the last posts I published before my Double Lung/Heart transplant in February was my 2011 "Year in Review." I ended that post with this sentence:

"I truly love my life and am so grateful for the experiences I'm having. I feel like even though we faced some tough challenges this year, we didn't let those challenges prevent us from really living and enjoying our lives. Actually, the challenges we faced this year made the precious moments even more precious and brought our families and our friends together in such a special way. Here's to 2011 and looking forward with hope and faith for an amazing 2012! Blessings!"

Well, we couldn't have hoped for a more amazing 2012. Here are TONS of pictures to tell the story from January to the end of May when we returned home from Los Altos...

Jan. 2011- We didn't know it then, but these visits in January would lift us and prepare us for what the next month would bring!

Best buds!

Watching the seals off Pier 39 after a day at the Exporatorium

Girl time with my adopted little sis's

More Girl time with these angels

Feb. 2011- We celebrated Harrison's 5th birthday and Valentines Day...

He was spoiled and he totally deserved it : )

Harrison and Mrs. Sarah at Kinderprep

Big thumbs up on Suedy and Alfonso's gift, a KEN BLOCK car!!

Feb. part II- Operation Lungs and Heart!

Minutes after getting the call from Stanford on Feb. 15th, talking with family.

First moments after double lung/heart transplant...

A few days post tx with my surgeon in the ICU.

March 2011- Recovery and HOME!!

Harrison's first visit to see mom post tx. "Mom, is this a snowmobile mask from the X-Games?!"

Sneaking outside for some fresh air. Harrison is an expert at steering the I.V. pole!

Trading slippers for running shoes, I may have cried when I put them on...

Home with my mom and boys, grateful beyond words for so many answered prayers.

 March part II- Birthdays we'll NEVER forget...

On my 33rd birthday we said goodbye to my well loved and well used heart and lungs and thanked them for fighting so hard to keep me alive.

The next day we celebrated Ryan's birthday by exploring!

March ended with another wonderful visit from Suedy. I honestly lost count of how many times she traveled to Los Altos to visit/help. I love her so much!

April 2011- A visit from Merzy, Easter in San Diego, celebrating 8 years of marriage with Ryan and making the most of our time in the Bay Area...

So fun to have Merz come for a visit! I don't get why everyone was staring at me?!

Reunited with everyone at Grandma's for Easter!

Easter Egg hunt at Grammy and Grandpa's!

Celebrating eight years married to the love of my life and my rock!

A Glorious Day in Muir Woods

 

Another Day Exploring!! (Lands End)

May 2011-  Saying Goodbye to our Beloved Los Altos

A day in Santa Cruz

Harrison's Kinderprep Class performing at the "Spring Sing"

Walking across the Golden Gate bridge for CF!

 

My mom treated Ryan and I to an amazing trip to Carmel. Our first trip together post TX!!

Hiking the "Dish" was something I desperately wanted to do post TX. We drove by it every time we went to Stanford. I could not have survived 2012 without my angel mother. She was with us every step of the way...

Harrison clinging to his best friends the night before we left.

AND ...we're home in San Diego after 9 months!!!

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.

 

Transplant

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.

Post-transplant.

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.

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: 

-Ryan

TEAM SHARLIE

                            

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!