Living for the Day I Receive a New Liver
“I’m living for the day I receive a new liver,” Dr. Carla Haley* shared. “After all these years of debilitating symptoms, they will disappear within twenty-four hours of the transplant.”
“Being a living liver donor is a big ask. The risk of surgery and the time off from life and family are extremely generous. I know most living donors are close friends or family. The spirit required to give to a stranger is a special gift. I don’t take that lightly. That person will literally be saving my life.”
* Her real name is used with her permission.
Donate Life Blue & Green Day
On this Donate Life Blue & Green Day, I (Melony) am honored to join Carla’s supporters in spreading the word about becoming a living donor. Our hope is someone reading Carla’s story will register to be a living donor.
You may be asking why does Carla need a living donor?
Waiting for the call that someone passed away and donated their organs is something Carla is willing to do, but sadly, her liver isn’t diseased enough yet to be eligible.
So, the alternative is a living donor: someone who is alive agrees to donate their gallbladder, bile duct, and 1/3 of their liver.
And time is of the essence. “The scariest part of having primary sclerosing cholangitis (PSC) or liver disease is knowing the life expectancy without treatment is ten years. This summer, I’ll begin year eight,” Carla shared.
Unrelenting Itch
It all started with itching. Persistent itching.
It was March of 2012 and Carla and her family were at the beach. While her kids enjoyed playing in the sand and waves, Carla was scratching. “It felt like wet sand covered my body.”
Sleep evaded her as she spent the entire night each night of vacation scratching the unrelenting itch all over her body.
Because the itching persisted after her vacation, Carla’s doctor ordered blood work. The suspects were lupus or connective tissue disorder, but the blood work revealed her enzymes were well above normal range.
A biopsy and testing with a gastro endronologist led to an official diagnosis of cholestatic liver disease in July of 2012.
[NOTE: Carla is not a drinker or smoker. She exercised 3-5 times a week, maintained a vegetarian diet, and was in great health prior to her diagnosis. Liver disease is no respecter of persons.]
Focusing on Others
Medication and a one-year follow up appointment accompanied Carla’s diagnosis.
Keeping the news between her husband and herself, Carla went to work, ran their household as usual, and signed up to be the team mom for her son Grant’s high school football team.
Focusing on others kept her from focusing on the uncertainty of her prognosis.
Even as she struggled, Carla put her family first by supporting Grant, Wesley, and Nichelle in all their activities. Seeing them happy and flourishing gave her strength.
Encouraged Her to Keep Fighting
Twice a year MRIs between 2013 and 2017 showed a slow progression to what could eventually turn into sclerosis of the liver. Carla clung to her faith.
During these years, Carla poured her life into her growing medical practice and her family. Her son, Grant, made history at Penn State in 2016 when he returned a blocked field goal for a 60-yard touchdown in a game against Ohio State.
Only a few people knew about Carla’s diagnosis, because she didn’t want anyone to think, “Poor, Carla.” Those who did know were a blessing to her as they rallied around her and encouraged her to keep fighting.
Limited Options
Frustrated with the limited options regarding her healthcare, she moved to a different health provider in May of 2017 that supported a live donor transplant program.
A full work-up for the program consumed her days. The tests showed her calcium score was high enough to raise the question of possible cardiovascular disease – a side effect of liver disease.
A heart catheter in late November revealed Carla needed bypass surgery.
Quadruple Bypass Heart Surgery
Just after the Fiesta Bowl in January of 2018 – Grant’s last college football game – Carla explained her liver disease diagnosis and prognosis, as well as the upcoming quadruple heart bypass surgery to her three children.
“I was anxious about telling my children about the liver disease,” Carla shared. “I told them I wasn’t going down easy. And what would make me better is if they took care of themselves like I’d taught them to, so I could take care of me.”
A week later, before her quadruple bypass surgery, Carla prayed what she learned at a Women of Faith conference: “God, I believe you are not finished with me yet and there are things left on this earth for me to do.”
Take the World by Storm
Recovery from the bypass surgery didn’t go as well as planned. Afib developed.
After a series of ineffective medications, a cardioversion procedure had her heart beating in its normal rhythm.
During her ten day hospital stay, Carla’s daughter Nichelle visited and said these words of encouragement: “You are the strongest woman I know. When you’re better, you’re going to take the world by storm.”
That was the plan. Her daughter’s words fueled her to keep fighting.
Six weeks of recovery earned Carla’s spot back on the live liver transplant list.
Her Fight Is What Drives Me
Since then, Carla has returned to her medical practice on a part-time basis. Instead of a caseload of patients, Carla spends her time teaching and coaching medical students.
Her son, Grant, signed with the NY Giants in May of 2018. Grant adores his mom and desperately wants to find a living donor for her. When interviewed in August of 2018, Grant said, “Honestly, her fight is what drives me now. She’s going through a lot, but she wakes up every morning with a smile on her face. It’s what we do. It’s the only way I know how.”
Perseverance in the Darkness
Carla agrees that wisdom comes through adversity. Looking at life as more good than bad keeps Carla’s attitude positive.
When she’s overwhelmed with her struggles and her heart is heavy, Carla looks to bless others with random acts of kindness. She’s found it comes back to her tenfold.
“I believe overcoming is perseverance in the darkness,” Carla shared. “Even though it’s been a long journey and dark at times, I’m committed to overcoming liver disease.”
Be Not Afraid
Individuals who step forward to donate a liver and are not a match for their own friend or family member may still choose to be the life-saving match for another.
Carla was upset when she learned a place to track this information is not in existence.
She knew creating a registry foundation where this information could be gathered would be a game changer for one or many, ultimately saving lives.
While many of the details are still in the works, her foundation has been established in the state of Georgia and is appropriately named “Be Not Afraid.”
Live Liver Donor MUST BE Found
Because of years of scratching, Carla developed carpal tunnel syndrome and arthritis in her fingers and wrists. Her fingertips are numb. Parts of her skin are white from macerating it when scratching. Years of sleepless nights due to unrelenting itching leave her fatigued.
Carla is truly weary from her eight-year fight against liver disease.
A live liver donor must be found. And soon.
An Angel Named Cathie
As of Monday morning, April 8, an “angel” named Cathie has been matched and Carla’s transplant surgery is scheduled for the end of this month!!!
“I am honored and blessed to be Carla’s match,” Cathie shared. “Her life’s work is about service to others. I’m the fortunate one who gets the privilege of representing all the patients she has helped. May God get the glory for creating an organ, like the liver, that can regenerate.”
None of Carla’s team believes the timing of her “angel” being approved in April during Live Donor Month is coincidental. “It totally shows God’s hand has been in this all along,” Andrea McSorley, one of Carla’s closest friends, shared.
As soon as Carla is fully recovered, expect to see her non-profit “Be Not Afraid” launched and helping track willing liver donors. Carla is ready to take the world by storm!
Leave a reply (below): Our lives are not about us. What will our lives say about us when we pass on?
Wow!! While reading your story, all I could think about is Luke 6:38: Give… and he will cause men to give into your bosom. Also, Staying strong, positive, supportive, and full of faith shows that God definitely has his hands on your life, which is phenomenal. Thank you, your family, and your donor for sharing this incredible journey, and the birthing of, “Be Not Afraid” a life changing organization that is going to save so many lives for God loves a cheerful giver!!
Thank you, Melony, for your gifted ability to share your own journey and that of others. Carla embodies what an Overcomer look and live like. We so appreciate your ministry and willingness to use your talents to help these amazing women. Cathie, you are, indeed, an angel ?
Cathie you are an incredible person and it’s a true blessing to call you a friend all these years. My dad was a kidney recipient in 1990. I wish I had the opportunity to thank his donor family for giving my dad 12 more years with us. God Bless both of you and prayers to a speedy recovery.
Praise God! Carla, I have been praying for you and your donor, standing on His promises! Andrea has openly shared your story with us on FB, and I am thankful for that as I know God is faithful for all He has chosen and who follow Him. What a blessing and inspiration to me you have been….. being a 5th grade teacher in her late 50’s with a 27 year old autistic, mentally challenged daughter, I often feel fatigued…… but having the ability to follow your story gives me hope and deepens my faith! If you are willing, I would love to know the date or around the date of your surgery so I can be specifically praying for you and your amazing donor! God Bless you, Carla!
What a journey this lady has been on. What a blessing to have someone volunteer to be a donor. God is good. I pray that he will take good care of both of them. Carla, you have been a brave and courageous person to deal with what you have been handed. May God richly bless you.
Carla, you are an inspiration! Your determination and positive attitude radiate throughout your story and I know others will be encouraged. I was so touched by your burden for others amidst your struggle in pinpointing the need for live donor tracking. Your future is so bright! May God bless you in your recovery and in your non-profit!!
Thank you, Carla and Melony, for sharing this story, and what an incredible story it is. Carla’s fighting spirit and her donors compassion are unmatched. Both will certainly inspire others when faced with struggles that require patience, endurance, and support from others. May God continue to bless you as you share and encourage so many.
Carla, I pray the surgery is successful. You have suffered a long time and I am sure you are weary. God is for you. Blessings!
Small world/big blessings Carla has been our family doctor and our neighbor since Grace was born, Cathie worked closely with me at SFUMC pre-school parent club, I can’t think of two more amazing women, I’m not surprised they are a match because they are both angels on earth. I’m lifting them both in prayer, and will be thinking of them tomorrow during the surgery and will continue to pray for them both. What a great gift and opportunity to give and overcome. Love you both and I’m sending love prayers and positive thoughts your way.
God bless