This holiday season, Danville’s Nicole Ludwig (43) is thankful for so many things in her life. She’s thankful for the beautiful daughter, Nadia, she and her husband adopted four years ago; she’s thankful for her wonderful husband, Jim who carried the emotional load when their lives were turned upside down in 2011, and, she’s immensely thankful for the heart she received last year that allows her to be with the ones she loves on Thanksgiving Day.
Having recently met the family of Charles Barry, whose heart Nicole carries, the Ludwig’s are especially thankful that the Barry family’s selfless act of kindness will allow Nicole to honor their son and brother’s memory for many holidays to come.
Nicole Smith was born in Walnut Creek. After her parents’ divorce, she spent time living with her mom in Alamo and her dad in Sunol, before she struck out on her own at the age of sixteen. After nearly a decade of fast food, fast cars and fast times, at the young age of twenty-six, she was diagnosed with dilated Cardiomyopathy (an enlarged heart). She was told she would die if she didn’t change her diet and lifestyle. Initially feeling indestructible, it took her almost six years before she quit smoking and drinking, started eating right and began a regular exercise routine which essentially allowed her to shrink the size of her heart. Her amazed doctors gave her a clean bill of health, took her off medication and sent her on her merry way.
For the next ten years, life for Nicole was good. She met, pursued and in 2006, married her husband, Jim Ludwig. Three years later, they were introduced to their future daughter, Nadia, through the Contra Costa County’s Foster/Adoption program. The adoption was finalized on November 20th, 2010 and the Ludwig’s were officially a family. Feeling truly blessed, Nicole walked marathons, was active in the community, and began acclimating to motherhood.
While on a hike one day with Nadia, Nicole noticed she was having trouble breathing. It dawned on her that she had been experiencing fatigue, dizzy spells and weight gain for several months, but she had attributed it to her increasingly chaotic schedule. That night, she followed her intuition and went to the emergency room at Kaiser Walnut Creek where she was told her heart condition had returned and was worse than ever. Simply put, her heart was misfiring.
“For the next twelve months I was sick a lot. Needing a procedure called a T-Maze, I had to wait until I was healthy enough for the doctors to laser the part of my heart that was misfiring,” Nicole explained to me. On July 8th, 2011 the procedure was performed and the next day Nicole was sent home to celebrate Nadia’s upcoming 7th birthday. Unfortunately, the following day things took a turn for the worse and she landed herself back in the emergency room. “The doctors had to shock my heart back to life 15 times in a 24 hour period. My heart and organs were failing, I was dying.”
Nicole would spend the next one hundred thirty days in three different hospitals, in desperate need of a new heart. “I spent 17 days at Kaiser in Walnut Creek where I received a defibrillator. The defibrillator was used to shock my heart back into rhythm. Sadly, I was unconscious most of the time and unable to assist in the decision making process about my care,” she says.
Truth be told, Nicole has no recollection of her time at Kaiser, Walnut Creek, and it was Jim who had to make the gut-wrenching, life or death decisions. She was transferred to Kaiser Santa Clara in August, where she spent 33 days in their cardiac unit. Finally, she was moved to Sanford Hospital’s Cardiovascular Medicine Department in Palo Alto for her first heart procedure.
On September 9th, 2011, a machine called an *LVAD (Left Ventricular Assist Device) was implanted into Nicole’s chest. After nearly nine weeks at Stanford Hospital, Nicole was transferred to a small apartment near the hospital’s campus where her team of doctors and nurses could keep a close eye on her as she began to rehab. This is also where Nicole and Jim learned to live life with the LVAD.
During her extensive time in a hospital bed, in and out of consciousness, fed through a tube, Nicole had lost a tremendous amount of weight, her muscles had atrophied and she had virtually no upper or lower body strength. She literally had to learn to walk again. After approximately two weeks, which included a scary (and embarrassing) shower incident that required being rescued by the Palo Alto Fire Department, the Ludwig’s returned home on November 22nd, , the day before Thanksgiving.
Along the way, Jim and Nicole had to help train members of the Danville Fire Department on working with the LVAD. Additionally, they were placed on PG&E’s Life Alert, in case of a residential power failure. Nicole lived with the LVAD for 5 ½ months (a LVAD user can live up to ten years), during which time she returned to a near normal life that included working out, volunteering at the elementary school and even sex. As grateful as Nicole was for the LVAD, there was no getting around the fact that she needed a new heart.
Stage 4 heart transplant candidates are on one of two lists. Nicole was immediately placed on 1B status, meaning she could be given a new heart at any time, however patients with 1A status have priority status. 1A status is essentially a 30-day high priority window so it’s critical for patients and their doctors to know exactly when to move up to 1A status because if a suitable heart is not found during that period of time, they move to the back of the 1B line. Nicole was placed on 1A status on February 1st 2012 and 25 days later got “the call.” Getting that call was very emotional for Nicole for a variety of reasons. “I had been functioning well on the LVAD and I knew the transplant would make me very weak again for a long period of time. This also meant having to miss more time with Jim and Nadia who had already been through so much during my prolonged absences.” Sadly, there was also the realization that to receive a heart, someone somewhere had lost their life and that weighed heavy on Nicole’s mind as well. “Without knowing who they were, I felt a deep sadness for the donor family.”
The heart transplant procedure went incredibly well and Nicole was released from the hospital on April 8, 2012, the day before Easter. On February 26, 2013, Nicole passed the critical one year period. It is standard practice for the donor family and heart recipient to wait at least six months before requesting any type of communication with the other party. Nicole made a hard, but conscious decision to wait twelve months, simply out of respect for the family. Once that request has been made, either side can choose to accept or deny contact. Eight months after her transplant, the Berry family (from Reno, Nevada) reached out to Nicole through the Donor Network social worker. Communication started with a letter from Charlie’s sister, Holly. From there, it moved to email and then to Facebook.
In September, the Berry and Ludwig families met for the first time, in-person, while participating together at the Donate for Life 5K in Santa Clara. Emotionally Nicole shared, “We laughed and cried a lot, but it was a wonderfully cathartic experience. Coincidentally both Charlie’s mom and I brought a stethoscope.”
You genuinely won’t meet many people with a bigger heart than Nicole, even if it’s not technically hers. She has a permanent smile on her face and spring in her step. Nicole credits her, “I need to live,” attitude with helping her cope with everything she went through. “I had a husband and daughter who needed me and a life I wanted to get back to,” she says. “Even my doctors had doubts, but they never gave up because they knew I wasn’t going to ever give up.” Needless to say, Nicole is thankful for so many things this holiday season, not the least of which is just being here.
On a side note: I, as much as anyone, am thankful that Nicole is here today. Their daughter Nadia is my great niece. It’s a long and complicated family story. Suffice it to say, my sisters, wife and I are so incredibly grateful that Nadia is in such a good and loving home with truly wonderful parents.. 
*The LVAD, developed by Thoratec in Pleasanton, is a mechanical device that circulates blood throughout the body when the heart is too weak to pump blood on its own. Two leads exit the body and attach to an exterior controller. The user wears a vest which holds the controller and is equipped with two VHS tape size batteries, each with an approximate twelve hour life span. The batteries are changed out, one at a time, at least two times a day. If the batteries fail, the patient has approximately 15 minutes to live.
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