She had promised to never give up, but the decline in her health was sudden and emotionally shattering. She started to prepare her family for the possibility of her passing as her condition worsened. Then, a miracle happened and she received a long awaited phone call.
She drew in her first breath on her own. The raw aching sensation which eventually emanated from her incision was nothing compared to the joy she felt from the transformation. Imagine taking your first clear breath at the age of 23. For the University of West Alabama student Libby Hankins, this was her reality:
“It feels good.”
Those were the first words Hankins said after her life-saving double lung transplant.
Since she was two years old, Hankins has struggled with cystic fibrosis, a disorder which causes a buildup of mucus that causes problems with nearly all areas of the body, especially the lungs and sinuses. After undergoing a six-hour surgery, she is now laughing and breathing clearly.
“I never thought I would be eligible for a transplant because of some of the infections that I culture,” Hankins said. “That is why I was denied a transplant in Alabama. Thankfully, Duke accepts high-risk infections, and I’ve been given a chance that I never dreamed could happen.”
On April 17, she received a call from Duke University Medical Center saying that she would finally get her new lungs. From the time she moved to North Carolina, she patiently waited 65 days for her transplant date.
Her surgery was a success. In an email, Hankins said her surgeon told her and her family that her new lungs were a perfect match and “not very exposed.”
She said she wishes that she could thank every person who prayed for her. There was never a time when she did not feel surrounded by prayers, and it made all the difference.
Maci Lankford, one of Hankins’ best friends and Phi Mu sister, was in the hospital the day she took her first breath. She said this experience has taught her to be grateful for everything she has and, “when life gives you lemons, make lemonade.”
“It was truly the most humbling experience I have ever been through, and I am just so happy for her,” Lankford said. “She deserves this more than anybody I know.”
Hankins said her only complications were that her stomach took longer to “wake up” from the surgery, and she did not pass her swallowing test. She could not eat any food for the first two weeks and only two ounces at a time for the first two months.
“It’s so hard to describe the pain,” she said. “At first, I could not feel the incision because the nerve endings had been sliced. When those feeling started to come back, the pain was considerable.”
Tubes were everywhere. Her hands were restrained so she would not pull them out. She had a large one in her neck to monitor her heart function and six chest tubes in her sides to drain the fluid and air from the space around the new lungs. The tubes coming out of her sides were connected to suction to help the lungs completely expand. She could not talk due to a ventilator tube down her throat for the first 12 hours.
Since Hankins’ doctors needed her to be awake and taking deep breaths, they could not give her an amount of medication that would make her sleep. She did have an epidural placed for the first five days which completely numbed her chest and abdomen. They were forced to remove it when she had an allergic reaction.
She said the days following her surgery were much more painful. To remove her old lungs, her breast bone was cracked apart and then wired back together. It was painful for her to cough and move, but they got her to start walking as soon as the ventilator was removed.
She was hospitalized for 12 days after the transplant. The morning after her discharge she started pulmonary rehabilitation at the Duke Center for Living. This was extremely hard on her.
“I thought I would pass out the first morning, but I made it.”
Hankins said she still has some kidney and sinus issues, but those are from cystic fibrosis, not her new lungs.
“Although I have beautiful new lungs,” she said, “the reality is that CF is still in every gene in my body and always will be.”
Hankins was admitted to Duke August 31 due to kidney issues. During her stay, they were able to rule out some causes of the problem, but they were not certain of the source. She had to deal with a catheter for a few days until her urologist felt that her medication had resolved the retention.
A combination of low blood pressure, fever and high heart rate sent Hankins back to the hospital September 22. The source was a UTI and sinus infection. They placed a peripherally inserted central catheter for a three week course of home IVs. She was discharged two days later.
When Hankins went in for her ENT appointment, they scheduled her next surgery for early November and extended her home IVs an additional 10 days.
Hankins is getting stronger every day. On October 25, she received the results from her six-month post transplant bronchoscopy. Her last recorded lung function before the transplant was 17 percent. It has now reached 99 percent. Before the transplant, she could not do something as simple as buying groceries.
“I knew that I was weak when I transferred from UAB to Duke,” she said, “but I did not realize that I was end stage until I saw it on my chart.”
Unfortunately, they had to extend her home IVs again until her sinus surgery.
On November 3, Hankins went back for her 23rd sinus surgery which lasted about two hours. Her doctor thought it would be a simple surgery but it did not go quite as planned. They made progress on her front left side by removing the polyps, or noncancerous growths, and infection with no issues.
Her right side needed a turbinectomy to remove some bone and tissue obstructing her nasal airway. However, her blood pressure continued to increase so they postponed the procedure. The surgeons will decide how to treat her right side when the packing is cleaned out in two weeks.
Hankins has labs drawn once a week to check the levels of her anti-rejection medications and pulmonary rehabilitation daily. She usually has at least two additional appointments a week with either physical therapy specialists or doctors specializing in infectious diseases, sinuses or kidneys. She has a transplant clinic visit twice a month.
The anti-rejection drugs have unpleasant side effects. Hankins’ hair thinned so much that she finally gave in and had it cut short. One of her pills, prednisone, causes weight gain and “moon face,” or the rounding of the face which often comes with steroid treatments.
“That has bothered me,” she said. “But, at the same time I am just so grateful to be alive that I can’t complain.”
After a year the prednisone dose will be reduced, and her doctors say that things will return to normal.
Even though she has never felt relief from cystic fibrosis before, Hankins has continued to keep a positive outlook on life and in turn, has touched the lives of thousands of people. One life in particular is one of her teammates, Tanika Smith.
Smith said it has given her a greater appreciation for life because someone made a selfless act that saved her best friend. This inspired her to happily accept to be an organ donor when she renewed her license.
“Libby herself has changed my life in a completely different way though,” she said. “She has shown me how to not only live life, but also love life and live each day like there isn’t a tomorrow.”
Other lives Hankins has influenced are those of her hometown community in Gordo, Alabama and the volunteers who have raised money for her cause. Transplants are an expensive burden for many patients, costing roughly $500,000. The Children’s Organ Transplant Association is a charity which helps communities raise funds for expenses related to transplants. The Gordo community and volunteers have raised over $150,000 for her through COTA.
Hankins said she has been more than blessed by the fundraisers. There have been fundraising events such as the GHS string band reunion concert, Easter “egging”, Que for the Cure and a baseball tournament. Volunteers have also sold merchandise such as t-shirts and bracelets.
The COTA page is still open for donations, but they have already reached their goal. Any additional funds will go toward Hankins’ monthly anti-rejection medications.
The surgery has not only affected Hankins physically, but also emotionally. It was hard on her to have to leave her home and school. She was so used to having her friends around her and being active. Until suddenly, it was not possible anymore.
She had to withdraw from the 2016 fall semester, but she passed her final Praxis test on September 12. She hopes to get a student teaching placement in Northport or Tuscaloosa so that she can live at her home in Gordo. Her doctors suggested that she live at home for at least a year due to the side effects of her anti-rejection medications.
After she graduates, she hopes to attend graduate school and earn her masters in correctional education. Her dream career would be to work with Down Syndrome children or in a juvenile correctional center.
“It is hard to see life go on without you,” she said. “More than anything, it is hard to know someone had to die for you to live.”
Hankins said if she could speak to her donor, she would tell him or her that they are in this life together now. She looks at her scars every day and thinks about how the person is sewn into her chest.
“No adventure I ever go on, no milestone I ever reach, and no joy I ever feel will be felt alone,” she said. “I want him or her to know that I won’t take a single breath for granted.”