Merry Christmas with my Twinkling IV Pole

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Merry Christmas! I hope your day is filled with lots and lots of love and light. To celebrate the birth of our Savior, I wanted to repost about my most meaningful Christmas (below). To me, this is what the light and hope of Christmas is all about. I was reminded of this just this past week when I went to my doctors appointment. My lung function was way down …again. I shed a lot of tears. It is easy to live in denial that I am slowly dying when I feel so alive and keep so busy. But in truth, I am blessed to be alive every single day. But because of Jesus Christ, I need not fear anything, even death. Because of Christ, – his birth, his sacrifice, his resurrection – we can all live together forever with our families.

“For unto us a ^achild is born, unto us a son is given; and his name shall be called, Wonderful, Counselor, The ^cMighty God, The ^dEverlasting Father, The Prince of ^ePeace.” Isaiah 9:6

He conquered death, and in doing so He also conquered fear, giving us the gift of peace. May we always honor his sacred gift today and throughout the year. xo

Merry Christmas with My Twinkling IV Pole

(adapted from my 2014 post)

As we approach the holidays, my mind is flooded with memories of two Christmas trees that stand out above all the rest. Not because they were tall or boasted perfect branches or were immaculately decorated, but because they’re a reminder of all the blessings and miracles in my life and of the generosity and selflessness of others. They remind me to be grateful for something as simple yet as miraculous as the ability to breathe.

The first tree was small and modest, quietly “doorbell ditched” on the front porch of a humble family as the culmination of an anonymous “12 Days of Christmas” my family was gifting them. I was just a small girl, but imagining the happiness that beautiful tree would bring to that family was the most exhilarating feeling I had ever felt.

The second tree is even more special to me because it was over 17 years ago at Children’s Hospital Los Angeles where our Christmas tree was my IV pole, wrapped and decorated with Christmas lights. My family and I were celebrating the realization of my anthem, “All I want for Christmas are two new lungs,” after my double lung transplant at age 16.

On Christmas Eve, we giddily watched the strand of IV Christmas lights twinkle as my parents, brothers, sister and brother-in law all clustered around my hospital bed, clothed from head to toe in yellow sanitary gowns, gloves and masks trying to eat pizza. It wasn’t about material gifts, it was about the gifts of life, love and family made possible through the gift of our Savior. It was the happiest Christmas I had ever known. Our happiness was made possible by two men truly loving their neighbor, and unselfishly becoming the answer to many heartfelt prayers.

Running hospital laps with my walkman and my Christmas IV pole — Running hospital laps with my Walkman and my Christmas IV pole

To explain, before this transplant, at age 16 I was deathly ill due to cystic fibrosis. Cystic fibrosis is a genetic disease that mainly affects the lungs and pancreas of the individual. Due to a defect in the sodium chloride channel, thick mucus is produced that clogs airways and leads to life-threatening infections which scar the lungs over time and kill lung tissue until there is no healthy lung tissue left. Death in CF patients is usually caused by suffocation in spite of constantly breathing oxygen from a tank.

My health had steadily been declining since my freshman year of high school as I gradually took less and less classes until my junior year, when I was completely home-schooled and eventually bedridden. Even as my health rapidly spiraled downward accompanied by constant 104-degree fevers, constant vomiting, no appetite, no energy to even stand in the shower (I had sponge baths instead), I was still in denial that I was dying. I had told myself as I watched my older brother, Justin, at age 19, cheerfully endure these same challenges months before he passed away, that if my behavior ever mirrored his, then I would know I was dying. I reminded myself of this, but I still couldn’t accept that death was what came next. That was impossible. I had always been so much healthier than Justin. I wasn’t going to die at 16 due to cystic fibrosis. The cure was going to be here. But my parents knew differently, they knew a living lobar lung transplant was my only hope for survival.

Jenstransplant3 — 1999 – Very ill, saying goodbye to my brother, Spencer, before he headed off to college a couple months before my lung transplant. If you look closely, you can see my IV pump in my pocket administering meds during the picture.

My day-to-day routine was not so bad, but some days, the accumulative effect of not seeing any improvement and not being able to do anything for myself would cause me to cave. I tried not to let my family see me cry, so it was often late at night when the tears would quietly and freely flow, bringing me to my knees…in bed. With swollen eyes, I would call on the powers of heaven, the very same powers that created this universe. I would plead for strength—in both mind and body.

As I struggled for breath and for life, it was confirmed to me again and again that God was my companion. I came to know in a tangible, undeniable way that God is our Father and loves us SO MUCH and is waiting, ready with open, outstretched arms to strengthen us as we wait upon him. As we read in Isaiah 40:29, 31, “He giveth power to the faint; and to them that have no might he increaseth strength…they that wait upon the Lord shall renew their strength, they shall mount up with wings as eagles.”

I know the simply prayers beginning with “My Heavenly Father” can have a profound effect upon our lives. He really does hear our prayers – no matter how big, or how small.

After a series of miracles, too many to detail here (you can read about some of them here or all about them here), I was accepted for a living lobar lung transplant at Children’s Hospital Los Angeles. A living lobar transplant is an alternative for individuals who will likely die while on the waiting list for a traditional transplant. It involves the surgical removal of the right lower lobe from one living donor and the left lower lobe from a separate living donor, (everyone has five lobes total) and replacing the recipients diseased 5 lobes (which are completely removed) with these two new lobes. The recipient now has a new set of lungs comprised of the donor’s two lobes. The first successful transplant utilizing a living lobe donor was celebrated in 1990 when a mother donated a lobe to her dying twelve-year-old daughter. In 1999, my junior year of high school, the procedure was still quite rare, and continues to be today.

After hopeful testing, none of my immediate family members or extended family qualified as a match for me. My very life was at the complete mercy of the selflessness and courage of friends. Word quietly leaked out to friends that a donor was needed. Within days, more than 30 individuals stepped forward and offered to undergo the difficult, painful surgery for me. It is indescribable to express what it feels like when you are so helpless, and can do nothing for yourself and angels steps forward and say, “l will do that for you,” which in this case translates to, “I will save your life.” After a series of tests and their own powerful witnesses to step forward, family friend Dr. Jim Davies and family friend and my church Bishop at the time, Graham Bullick, were accepted as my lung donors.

Jenstransplant04 — A few nights before my lung transplant with donors Dr. Jim Davies (left) and Graham Bullick (right)

The night before surgery, my dad recorded in his journal: November 28, 1999: “I have talked to many doctors since being here about the procedure. It will be a difficult few weeks but seeing Jennifer healthy, with energy, will be terrific. She is so excited. She is so remarkable. She said if it were not for her family she would just as soon pass on. She said, ‘Dad, I think this surgery will be fine, but if not, don’t be sad because I’ll still be fine. I will either wake up with new lungs or wake up on the other side. Both would be great.’ What great faith she has. She said the transplant is too easy and wondered what future challenges she would need to face if this works!”

Jenstransplant5 — Intubated the first week after my transplant

After a week of health ups and downs and many prayers on my behalf after surgery, my breathing tube was finally removed. It was with no little reverence that I inhaled my first deep breath with my new lungs and crumbled into a puddle of tears. My tears were the grateful realization I had new, healthy working lungs. I was going to have energy. I was going to breathe easily. I was going to breathe deeply. I wasn’t going to cough twenty-four-seven. I was going to live.

Jim and Graham pointing at my lung X-ray of how perfectly their lobes make me a new set of lungs — Jim and Graham pointing at my lung x-ray of how perfectly their lobes make me a new set of lungs

A couple days later, my joy turned to extreme reverence and gratitude as I beheld my donors on the other side of my ICU glass window. Although they were not allowed into my room, no walls could separate the love penetrating every inch of that hospital chamber. The weight of their sacrifice became more real as I sat inhaling and exhaling with lobes from their lungs, all the while not feeling like I wasn’t breathing at all. As I gazed at their smiles through the glass, I was overcome with indescribable awe and tremendous gratitude at their sacrifice. My donors had willingly teetered on the edge of mortality in order to rescue me from the brink of death. I knew from that moment on, every joy I experience in this life, every new discovery, every smile, every hope for the future, simply every second, I would owe to them.

A few of my surgeons and me after a successful transplant!

Their sacrifice has given me greater understanding and greater appreciation for the suffering, sacrifice, and saving power of Jesus Christ. Speaking of His sacrifice, President Gordon B. Hinckley stated, “We cannot forget that. We must never forget it, for here our Savior, our Redeemer, the Son of God, gave Himself, a vicarious sacrifice for each of us. May we always remember Him and the price He paid to win our souls.” Remembering and being grateful for my donors’ gift, and Christ’s exquisite gift is my guiding light. Everything is made permanently right in Christ – whether in this life or the next if we strive to follow Him.

Smiling through the glass in the ICU. I also had a speaker so I could talk to my guests on the other side.

Our wonderful family friend, Eric Ottesen, dropped of a life size cardboard cutout of wrestler Stone Cold Austin with custom quotation bubbles that read, “Maybe you didn’t hear me buddy, I said she’s sleeping until noon!”; “Are your ears painted on??? I said no one comes in without my permission!”; “You call this food?! Send in the cook for a little one on one chat with me!”; and my personal favorite, “I was a lobe transplant recipient three weeks ago, now look at me!” — Our wonderful family friend, Eric Ottesen, dropped off a life-size cardboard cutout of wrestler Stone Cold Austin with custom quotation bubbles that read, “Maybe you didn’t hear me buddy, I said she’s sleeping until noon!”; “Are your ears painted on??? I said no one comes in without my permission!”; “You call this food?! Send in the cook for a little one-on-one chat with me!”; and my personal favorite, “I was a lobe transplant recipient three weeks ago, now look at me!”

Now, over 17 years later, I am grateful for all that my donors have made possible in my life, including my selfless sister who donated her kidney to me in 2013 (more here). I owe them my very life – from graduating high school, to graduating college, working multiple jobs, starting my own company Carlsbad Cravings and getting to cook and eat a lot, to traveling to exotic locations, living with 13 different roommates, forging lifelong friendships, being aunt to over 20 nieces and nephews, continued daughter to my parents and sister to my brothers and sister, to being mommy to my squishy French Bulldog, Kiwi, to marrying the man of my dreams and getting to spend my cherished time with him. All made possible by Graham, Jim, my sister, Kimberly, and an omnipotent Father in Heaven.

2009 - our 10 year transplant reunion with the 3 stooges and Stone Cold Austin making a guest appearance — 2009 – our 10 year transplant reunion with the 3 stooges and Stone Cold Austin making a guest appearance

As I think back on these two special Christmases and Christmas trees, I realize that we likely won’t have the chance to physically save someone’s life, but we do have the opportunity, whether we know it or not, to save others every day emotionally and spiritually through our small acts of love and kindness. Giving to others, and being recipients of giving, changes everything. As Albert Einstein so eloquently stated, “Only a life lived for others is a life worth living.”

I’m so grateful for those who were willing to give their life for me, and for what it has taught me about honoring the reason for the season, even our own Savior, Jesus Christ.

I wish you all a very Merry Christmas full of gratitude, love and loved ones! To read more of my story and my source of hope and strength, click here.

MERRY CHRISTMAS!!!!

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