Wings to Fly: Monique’s Story
What happens when a world traveler is grounded by a lifelong disease she thought was under control? Do you believe that soulmates actually exist? This Perspectives Feature series shares the extraordinary stories of patients who got their lives back because of the expert care they received at Einstein Healthcare Network’s Department of Transplantation, and shines the spotlight on our dedicated team of specialists and visionaries.
At age 41, Monique Crenshaw says she has not felt this good since she was 15. It was then that she was first diagnosed with autoimmune hepatitis, a chronic disease in which the body’s immune system attacks the liver, causing inflammation and damage. In some cases, it can lead to liver failure.
That diagnosis was just the beginning of a long and challenging journey for the ambitious, fun-loving pharmaceutical sales representative. Following her diagnosis, Monique had to miss a year of high school ─ home-schooled instead because she was too weak to leave the house. Medication helped, but did not alleviate the chronic fatigue. She powered through it.
She got sick again during her college years, and the hospital stays became more and more frequent as she navigated her 20s. She had to take off months at a time from work, and ultimately moved from Virginia back to Delaware where her family could take care of her.
Monique’s family has always been right by her side, taking shifts during every hospital stay so Monique would never be alone, even during the overnight hours, and providing her with strength and positivity through the most difficult of times. Many of the people around her never even knew she had a chronic disease. She danced through life counting her blessings, never wanting to be defined by her illness.
“My family has always been my support system,” says Monique. “I couldn’t ask for a better set of parents. My father is my rock. In my worst moments, he would say, you have 24 hours to be down, then you have to get back up. My mom is my backbone. And my sister will drop anything to be there for me.”
It was her sister, Michelle—one year older—who eventually decided Monique needed a new team of trusted experts to manage her disease. After researching options and sharing recommendations with her younger sister, Monique chose Simona Rossi, MD. When Dr. Rossi joined Einstein Healthcare Network in 2013, Monique followed her here.
“When I first met Monique, she was on a significant amount of immuno-suppressants,” says Dr. Rossi. “My first step was to wean down her medications and get her stable.”
For many years, Dr. Rossi and Monique’s team of physicians were able to control her disease with the right medications alone. It was in January of 2015 that Monique became very sick again and was hospitalized.
“Monique had a long history of autoimmune hepatitis,” explains Dr. Rossi. “As a result, she developed progressive liver disease.”
At Monique’s follow-up appointment—her parents by her side and her sister listening in on the phone—Dr. Rossi let the family know that the time had come for Monique to be placed on the transplant list for a new liver.
“I could hear what she was saying,” recalls Monique. “But it wasn’t registering. Dr. Rossi had talked about the possibility of a transplant before, but I never thought it would happen in my 30s. I thought, maybe in my 60s or 70s. I was scared out of my mind. If my body doesn’t like the liver it was born with, who’s to say it’s going to like a foreign object?”
“I remember Dr. Rossi taking my hand and telling me I was going to be fine,” says Monique. “She said, ‘I’ll be with you every step of the way. I’m not scared. I’m going to you guide you through this. And you’re going to have a great life after this.’ I think because we always had such a special relationship, I was like, if you’re going to walk beside me, then I’m good. I know I’m going to be okay.”
“I went home,” says Monique. “And waited.”
The call came on April 27, 2015. Einstein liver and kidney transplant specialist Radi Zaki, MD would perform Monique’s surgery. She had met him before. She wasn’t scared.
“I have so much confidence in my Einstein team,” says Monique. “They always embraced my family and answered all the questions that needed answers. When I’m at Einstein, I feel safe. I knew they would fix whatever needed to be fixed.”
Anyone who knows Monique is not surprised to hear that she named her new liver Linus, after the Charlie Brown character who carries a security blanket and sucks his thumb. Linus, she explains, has attachment issues, and she needed her new liver to attach to her. She wears a Linus necklace – a gift from her dad.
Says Monique, “Me and Linus, we’re a team.”
She admits that her recovery was extremely difficult. It took several months to gain her strength back. Her dad accompanied her to the post-transplant clinic for every visit, beginning with two visits per week and slowly decreasing.
After all that she had been through, the only thing that upset her was learning that she would not be allowed to fly for an entire year following her transplant. Travel is Monique’s passion and her favorite way to spend free time. She says the doctor just looked at her father and said, “Why is she breaking down over travel?”
When she “graduated from clinic,” Monique flew to Grand Cayman the very next day, immediately followed by trips to Cabo San Lucas and then Atlanta. “Travel is how I live my life,” she explains. “I’ll get on a plane just to eat at a restaurant. As long as I get to do what I need to do, Linus can travel the world with me all day long.”
While she tried to never let her illness hold her back from doing the things she loves, Monique says she finally feels like she can move forward without fear of life being interrupted. She recently bought her first house and is in the process of completing her MBA.
“I’ve always pushed through and lived my life to the fullest,” she says. “But before my transplant, it was like I had one foot in and one foot out of everything, because I didn’t know when I was going to feel sick again or need to be hospitalized. And I was exhausted all the time. Now I have so much energy.”
She has gone bungee jumping and ziplining, and she swam with the dolphins. She has been to Paris, South Africa and “a bunch of islands.” Coming up next is a trip to Doha, Qatar and the Indonesian island of Bali to celebrate Linus’s third birthday. “Life,” Monique says, “is actually really great.”
As for her experience with Einstein—Monique still sees Dr. Rossi for ongoing check-ups—she says, “I could not have asked for a better set of doctors. They are experts in their field. And I received genuine compassion like I never had before. Those doctors fought for me. They’ve given me my life back. They’ve given my family their lives back. Einstein is like family to my family.”
Einstein now offers FibroScan®, the first device approved by the FDA for the management of patients with liver disease. FibroScan uses ultrasound technology to help detect levels of fibrosis and fat in the liver, and to monitor treatment progress. Scans are noninvasive and painless, and typically take less than 10 minutes.
FibroScan is available at Einstein Medical Center Philadelphia. The Center for Advanced Liver Disease and Transplantation also features satellite locations throughout the tri-state region, including Einstein Medical Center Montgomery. Call 1-800-EINSTEIN to learn more.