A Kansas woman suffered liver failure and was given just three months to live after her symptoms were mistaken for fatigue.
Doctors said 39-year-old Kahley Schiller’s constant physical and mental exhaustion was just a consequence of her busy lifestyle as a mother of two young children and a small business owner.
The mother of two was so out of breath and plagued by intense waves of nausea that she could barely finish classes at her Pilates studio.
When Mrs. Schiller’s eyes turned bright yellow from jaundice, doctors realized her liver was not functioning properly and she was rushed to hospital.
A biopsy revealed that her liver was rapidly failing due to undiagnosed autoimmune hepatitis, a chronic condition that causes the immune system to attack liver cells.
After two days of failed steroids, doctors warned that if she did not receive a liver transplant, she would have only 90 days to live.
Ms Schiller, now 44, told DailyMail.com: ‘I felt very numb. I was just hanging on to survive.”
Kahley Schiller (pictured here), 44, from Kansas, developed advanced liver failure in 2019 due to autoimmune hepatitis. Doctors gave her only 90 days to live if she didn’t get a transplant
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Autoimmune hepatitis affects about one in 25,000 Americans.
It’s unclear why this happens, but it tricks the body into thinking the liver is harmful, causing it to attack healthy tissue.
If left untreated, the damage can lead to permanent liver scarring called cirrhosis and organ failure. At this stage the only treatment is a transplant.
Ms Schiller said her enzymes were all normal during routine blood tests she had a few months earlier, indicating her condition was rapidly worsening even though she didn’t know she had it.
Many patients like her can take years to diagnose due to mild symptoms that are mistaken for other causes.
While Ms. Schiller waited for a liver, her appetite completely disappeared because her throat burned and “just felt so full.”
All the muscle tone she had built through Pilates was gone, and she gained 30 pounds from steroids and fluid retention, caused by the buildup of pressure in the veins that supply blood to the liver.
The active mother of two (pictured with her two sons before and after diagnosis) was forced to get her will and other affairs in order while she waited for liver surgery.
Although she was sent home to wait for the new organ, she was so weak that she could barely walk down stairs or drive a car.
When her body began to fail, Ms. Schiller quickly rose to the top of the University of Kansas Health Care System’s transplant list, but she also faced the grim task of getting her affairs in order in case the transplant never happened.
She said: “I started making arrangements and getting power of attorney.
“I didn’t want to do the right things, because there’s really no guarantee whether you’ll get a transplant or not.”
According to the Health Resources and Services Administration, more than 100,000 Americans are waiting for an organ on the national transplant list, and 17 die every day waiting for a transplant.
In September, 9,500 people in the US were waiting for a liver transplant, the second most in-demand organ after the kidneys.
However, only 33,000 living and deceased Americans are registered as organ donors.
In October 2019, a month and a half after her diagnosis, Ms. Schiller received a call that a liver was finally available. She found herself sobbing the entire ride to the hospital, but not from excitement.
She said: “It’s really challenging because in my situation I was waiting for someone to die to live. That’s a very difficult concept to rationalize.’
During the operation, Ms. Schiller suffered a blood clot that resulted in a pulmonary embolism, a blockage in one of her pulmonary arteries.
The clot then traveled to her heart, where it passed through a hole called a patent foramen ovale (PFO).
Although everyone is born with a PFO, in most patients it closes shortly after birth. But for one in four people the gap remains open.
Normally this is harmless, but Ms Schiller’s blood clot passed through her PFO and moved to her brain, resulting in four small strokes while she lay on the operating table.
Doctors were forced to stop the transplant and insert an inferior vena cava (IVC) filter to help prevent further clotting. She had to remain sedated for 24 hours before the team could complete her transplant. The liver remained viable during the complications.
She woke up more than 30 hours after her surgery began.
Ms. Schiller suffered a blood clot during her liver transplant that traveled to her lungs, heart and brain, resulting in four small strokes. She spent two weeks in hospital (pictured left in bed and right with her husband and mother) recovering
Mrs Schiller, pictured here five years after her transplant, told DailyMail.com: ‘I never want to experience it again because it was really challenging. However, it has made me better in many ways and helped me overcome my insecurities.”
Mrs Schiller said: ‘I woke up very confused and didn’t understand why I was awake the next day instead of about six hours after a normal transplant operation.
‘That brought with it a lot of emotions, because now I had new doctors. Now I had a neurologist, now I had a cardiologist who came to see me, as well as surgeons who performed my operation and a hematologist.
‘It was really overwhelming. Once I woke up, on top of being in the worst pain I’ve ever experienced in my life and now being bombarded with all this information, a lot of emotions came to the surface. I still had hope, but it was a lot to process.”
Ms. Schiller spent two weeks in the hospital and returned home with a wishbone-shaped scar that stretched across her entire abdomen.
She also suffered from debilitating lower back pain, as well as migraines due to the strokes that were so intense they could last for up to 12 days at a time. But right after she got home, she started working to regain her strength with short walks on the treadmill.
Pictured here is Ms. Schiller’s scar from her liver transplant
Mrs Schiller told DailyMail.com: ‘Every day got better. Every day it was something amazing. I saw my skin color come back to life. My eyes started to turn white again. The fluid started to leave my body.
‘When your body deteriorates so quickly, it’s as if a plant starts to die. But then you decide to give it another chance and give it water and love and whatever it needs.
‘That’s what your body does; it comes back to life and blooms again after you get a new organ.
“That was quite fascinating to watch, to see my body literally come back to life.”
In the months following her transplant, Ms. Schiller was able to use Pilates “to completely rehabilitate both my core and my entire body,” but it took about a year to “feel physically and emotionally normal again.”
‘I was determined. “I just wanted to feel strong again,” she added.
Now, five years after the transplant, Ms. Schiller is back to doing Pilates regularly and running four to five times a week. She takes anti-rejection drugs to prevent her body from rejecting the new liver and undergoes blood tests every month to check her enzymes.
She also avoids alcohol and avoids grapefruit and pomegranate because they interact with her anti-rejection medications.
She said, “I actually put myself back together.”
‘I never want to experience it again, because it was really a challenge. However, it has made me better in many ways and helped me overcome my insecurities.
‘It really made me realize how precious life is.’