November is National Family Caregivers Month!
“A COTA Transplant Family is Grateful for a Second Chance at Life and for Family Members Who Travel Transplant Journeys Each and Every Day.”
As the chill of November sets in,
many thoughts turn to holiday planning, Thanksgiving preparations, and gratitude. A California family’s ‘Thanksgiving’ comes on November 1st, which is the two-year anniversary of their daughter finally being listed for a life-saving double lung transplant.
The Lenart family traveled the road to transplant for three decades waiting for Alyssa to receive ‘the call.’ In a few weeks, they will hopefully be able to gather around a large Thanksgiving table to express gratitude for their donor family’s selfless decision and for their entire family’s ability to finally breathe a little easier.
National Family Caregivers Month
is the perfect time to share a transplant caregiver’s role in a life-saving journey. COTA Mom, Renee Lenart, has been Alyssa’s primary caregiver throughout her three-decade transplant story that has included many ups and downs, celebrations and disappointments, non-stop medical appointments and laboratory visits, tears, and laughter … fears and dreams come true.
Renee remembers the day in June 1990 when Alyssa was born. She and her husband, Paul, were delighted to be expanding their family of four to a family of five. They were instantly smitten with the tiny infant and her beautiful eyes.
However, as soon as they were settled in at home, Renee knew something was not right with the baby. After several misdiagnoses and multiple doctor visits, they finally found out there was a name for what was crippling their infant daughter.
At just 10 months old Alyssa was diagnosed with Cystic Fibrosis (CF), which is a progressive, genetic disease that causes persistent lung infections that develop into lung cysts and severely limit the ability to breathe over a period of time. Renee and Paul were carriers of the disease yet they had no idea until Alyssa was born.
In people with CF,
a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria which leads to infections, extensive lung damage, and eventually, respiratory failure.
Renee thinks back 30 years ago to the first days of her complicated role as Alyssa’s primary caregiver.
“They did not have the machines that are available now to clear the mucus out of the lungs. I literally had to beat on her. I would hold the baby upside down and pound on her while she cried. And I was crying my eyes out, too. But it was what had to be done to clear out the mucus and keep her breathing.”
Alyssa’s first hospitalization was not until kindergarten.
It lasted weeks and was a turning point in the family’s new reality. Renee said, “We did everything we were told to do to keep her alive as a little girl struggling with CF, but we could not make her childhood ‘normal’ no matter how hard we tried.”
From kindergarten and into her high school years, Alyssa and her mom were in and out of the hospital countless times. In addition to being Alyssa’s primary health care provider and advocate, Renee also had to help with school work due to absences from the classroom.
At 16 years old,
Alyssa fell extremely ill and, for the first time, faced the possibility of a lung transplant. After battling that particular infection, she recovered and made the decision to complete her education and live life without limitations. Renee, as always, was ready to do anything Alyssa needed to achieve her goals.
Alyssa graduated in 2008 from Tracy High School in Tracy, California. It was a big celebration for the Lenart family. They celebrated once again when Alyssa graduated from the University of the Pacific with a bachelor’s degree in communications.
Alyssa achieved these education milestones
and served as the Media Relations Intern for the Stockton Ports 2013 season all while struggling with the toll CF was taking on her body. Through it all, Mom Renee remained her number one cheerleader and caregiver.
Finally, in June 2018, Alyssa and her physicians decided it was time to get serious about a lung transplant. Alyssa had reached the point where she had to quit a beloved job working with children because her body simply would not allow her to do anything much more strenuous than getting out of bed.
Renee was always there dealing with Alyssa’s range of emotions.
She was sad … she was angry … she was frightened … and she was somewhat reluctant about the rigors of a double lung transplant. (The ‘she’ here describes both Alyssa and Renee.)
After much discussion and many tears, Alyssa started the six-month process to get listed for a double lung transplant at the University of California San Francisco Medical Center — about 100 miles away from the family’s home.
A transplant nurse coordinator at UCSF
talked to the family about the many realities of a transplant. She told them there is a lot of medication after a transplant and it is not easy to get it right, adding that overall costs can reach into millions of dollars.
A transplant recipient has to demonstrate there is someone, i.e. a caregiver, who will be available throughout the inpatient and outpatient stay … and also once the patient returns home to ensure everything is managed correctly.
Again, Renee knew this would be her role in the next phase of Alyssa’s journey; she was trying to glean as much information as possible during Alyssa’s transplant evaluation process.
“I remember the first day I heard about the Children’s Organ Transplant Association (COTA),” Renee said. “Alyssa was inpatient for yet another exasperation in her lungs when a transplant social worker came into the room.
She talked to us about the fact that Alyssa
would soon be listed on the transplant registry and what it really meant. She talked about medications, costs and the likely need to do fundraising … and she stated it was never too early to get started. My husband and I were reluctant to accept ‘charity’ so we listened with pleasantries, yet our hearts sank. It was so much to hear in one conversation.”
“Then she told us there was some good news. She handed me five brochures from various organizations. I had them fanned out in my hand when she leaned over and took back four of them saying we would not need those. We were told it was the transplant center’s policy that all had to be offered, but the one describing the Children’s Organ Transplant Association (COTA) was the only one we would need. She told us she had never heard anything but good reports from families who had used COTA to fundraise for transplant-related expenses.
We nodded politely, still not sure about fundraising, but knowing very well that a lung transplant and long-term recovery stay in the San Francisco area would be very expensive. And as Alyssa’s primary caregiver, I would likely need to take a leave from work to be with her before, during and after the transplant.”
Renee kept the COTA brochure close at hand, but continued being solely focused on Alyssa’s care. During the fall months of 2019, Alyssa was really struggling to breathe. It was the worst Renee had witnessed over the years.
On November 1, 2019,
Alyssa was officially listed for new lungs. Renee decided it was now time to call COTA to learn more about how they might be able to help ease some of the financial stress and anxiety the family was facing.
“Every single person I talked to initially at COTA was so reassuring and completely patient with our reluctance about fundraising,” Renee said. “They were able to offer so much insight from a financial standpoint about how devastating all of this can be for a family. Given the guidance they shared and their sincerity, we decided to move forward with COTA.”
The Children’s Organ Transplant Association (COTA)
uniquely understands that parents who care for a child or young adult before, during, and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax-deductible to the fullest extent of the law, and COTA funds are available for a lifetime.
Because she was an adult, Alyssa signed the COTA agreement. It arrived at COTA’s headquarters a few weeks after Renee called the office, and the Lenart family officially became part of the COTA family. Renee and Paul approached various friends and family members and asked for their help with the COTA fundraising effort that would be launched in Alyssa’s honor.
“We were so surprised when we found out a COTA fundraising specialist would be flying to California to meet us and train our volunteers, at COTA’s expense. Wow. The training offered wonderful insight and guidance, which we desperately needed.”
The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Team Alyssa ML was launched; the team of volunteers quickly got to work planning and orchestrating successful COTA fundraisers and promoting the ease of online donations through the website.
“COTA was a guiding force that helped our family in so many ways,” Renee said. “The ideas and resources they provided to our volunteers were incredible. They not only offered fundraising ideas and strategies, they also provided an ear to listen and offered comfort when we were at our lowest points.”
On May 27, 2019, at 5:30 a.m.,
Renee remembers her joy and relief when she answered the telephone, “There are lungs!” The family quickly packed and headed to UCSF. Alyssa was taken to the operating room about 2:00 p.m. that day. Renee and Paul kissed her good-bye while seeing the fear in each other’s eyes.
They headed to the cafeteria where they would wait for the next 10-12 hours. Renee blogged on the COTA-provided website: “Today begins a new journey for our family. I cannot wait for Alyssa to take her first breath with her new, healthy lungs.”
Over the coming days and weeks,
Renee would remain at Alyssa’s side to witness firsthand how terribly challenging a transplant is. She updated family members and friends regularly throughout the post-transplant days and months. Her messages reflected the stress, worry and fear she felt … but Renee always remained hopeful:
“Alyssa just opened her eyes and asked for her dad and me. She is trying to talk but can’t because of the breathing tube. She is one tough cookie.”
“Alyssa is off the ventilator during the day, but still needs it at night for sleeping. She required another blood transfusion.”
“They got her up and she took her first walk around the ICU. Super successful. She still has so much pain but they re-did the epidural. Just passed the swallow test which allows her to eat and drink.”
“White blood cell count is up. She has some bacteria growing and they are trying to figure out how to fix that.”
“She took two walks today and sat in a chair. She got to eat today.”
“Moved back to the ICU. We have hit some bumps in the road. Alyssa taken back to surgery where the team decided they needed to reopen the entire incision area. Intubated again and back on the ventilator.”
“Cultures just came back showing she has pneumonia. Doctors are working aggressively on the issue. She is in pain.”
“Biopsy results today showed no signs of rejections.”
Renee posted once they arrived back at their home in Tracy, “This has been a difficult yet rewarding journey. We are so thankful for the family that chose to allow their loved one to be a donor and we continue to pray for comfort for them.
We, on the other hand, are ecstatic and excited to watch Alyssa recover and regain her active life once again. She spent 37 days in the hospital with 24 of those being in the ICU. She had several setbacks along the way.
Alyssa was intubated four different times, endured two operations and two OR procedures, underwent numerous bronchoscopes, had two biopsies on her new lungs, laid still for a three-hour MRI, had two blood clots, two blood transfusions, daily chest x-rays, OT sessions, PT sessions, RT sessions and daily visits with multiple doctors.
We are just now adjusting to the rules and day-to-day living rigors of being post-transplant. We are managing 40+ medications, daily breathing treatments, checking blood sugars, oxygen levels, heart rate, weight, and temperature twice each day. It is all overwhelming to say the least. We made it home after living 93 days in San Francisco.”
Today Alyssa has good days and bad days. Her hope for the future is to be normal, have a career and her own place and to one day be able to travel. All things Alyssa never thought would be possible. Renee’s hope for Alyssa’s future is simply for her to be happy.
“Our family is so grateful for Alyssa’s medical team, for the family who chose to donate their loved one’s lungs, our friends and family, and for COTA,” Renee said. “I truly do not know what we would have done without COTA at our side during Alyssa’s transplant journey.
A huge thank you to everyone at COTA who put all of the pieces together for us, allowed us to be worry-free during the absolute scariest time of our family’s life and gave us hope. COTA continues to offer support and guidance with transplant-related expenses now, and will do so … for a lifetime.”
According to Renee,
“It has been almost two and a half years now since Alyssa’s transplant. When COVID-19 hit, Alyssa was able to get a job as a tutor/nanny for three children. She was beloved by the family and worked for them the entire school year while the mother needed to teach distance learning from home.
When that job ended, Alyssa started working for a local car dealership where she currently works. Our family is now in the process of moving to Colorado where we hope life can slow down a bit and enjoy time with family there.
We all agree that Alyssa’s transplant was probably the most challenging single event in our entire lives; however, the desired outcome was achieved – Alyssa being able to live life fully.”
“COTA has been such a blessing for our family in many ways and we are so very thankful for all they do. COTA has truly made a difference in our lives,” Renee said.
The National Family Caregivers Month proclamation states: We honor those whose extraordinary selflessness provides others with independence and comfort. We salute those who play difficult and exhausting roles and lift up these Americans as they care for their loved ones.
Happy Thanksgiving, Lenart Family from your COTA Family. And thank you, Renee, for being a role model transplant caregiver!
For more information about the Children’s Organ Transplant Association (COTA),or to find a COTA family in your area, please email firstname.lastname@example.org.
*Photo courtesy of Alyssa Lenart
COTA Adult Alyssa Lenart
Double Lung Transplant Recipient