Doctors mistook busy mom’s fatigue as the result of her lifestyle – in reality she had just 90 days to live
A Kansas woman went into 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 were just a result of her busy lifestyle as a mother of two young children and small business owner
The mother-of-two was so winded and plagued with intense waves of nausea that she could barely finish teaching classes at her Pilates studio.
When Ms Schiller’s eyes turned bright yellow from jaundice, doctors realized her liver wasn’t functioning correctly and she was rushed to the hospital.
A biopsy found her liver was rapidly failing from undiagnosed autoimmune hepatitis, a chronic condition that causes the immune system to attack liver cells.
After two days of failed steroids, doctors warned if she didn’t get a liver transplant, she would have had just 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, of Kansas, went into advanced liver failure from autoimmune hepatitis in 2019. Doctors gave her just 90 days to live if she didn’t get a transplant
Autoimmune hepatitis occurs about one in 25,000 Americans.
It’s unclear why this happens, but it leads the body to think that 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 testing she receive a few months prior, suggesting her condition progressed rapidly, even though she didn’t know she had it.
Many patients like her can go years without being diagnosed due to mild symptoms mistaken for other causes.
As Ms Schiller waited for a liver, her appetite was completely gone, as her throat burned and ‘just felt so full.’
All of the muscle tone she had built up from Pilates had disintegrated, and she gained 30 pounds from steroids and fluid retention, caused by pressure building up in the veins that supply blood to the liver.
The active mother-of-two (pictured with her two sons before and after the diagnosis) was forced to start getting her will and other affairs in order while she waited for a liver
Though she was sent home to wait for the new organ, she was so weak she could barely walk down the stairs or drive.
As her body shut down, Ms Schiller quickly moved to the top of the transplant list at the University of Kansas health system, but she also faced the grim task of getting her affairs in order in case the transplant never came.
She said: ‘I started making arrangements and getting power of attorney.
‘I didn’t want to not do the proper things because there’s really no guarantee if 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.
As of September, 9,500 people in the US were waiting on a liver transplant, the second-most in demand organ behind kidneys.
However, just 33,000 living and deceased Americans are registered as organ donors.
In October 2019, a month and a half after her diagnosis, Ms Schiller got a call that a liver was finally available. She found herself sobbing the whole drive to the hospital, but not out of excitement.
She said: ‘It’s really challenging because, for my situation, I was waiting for someone to pass away to live. That is a really hard concept to rationalize.’
During surgery, Ms Schiller suffered a blood clot that resulted in a pulmonary embolism, a blockage in one of her lung arteries.
The clot then traveled to her heart, where it passed through a hole called a patent foramen ovale (PFO).
While everyone is born with a PFO, it closes in most patients shortly after birth. But in one in four people, the hole stays open.
This is normally harmless, but Ms Schiller’s blood clot passed through her PFO and moved to her brain, resulting in four minor strokes while she was 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 finish her transplant. The liver remained viable throughout the complications.
She woke up more than 30 hours after her surgery had started.
Ms Schiller suffered a blood clot during her liver transplant that traveled to her lungs, heart, and brain, resulting in four minor strokes. She spent two weeks in the hospital (pictured left in bed and right with her husband and mother) recovering
Ms Schiller, pictured here five years after her transplant, told DailyMail.com: ‘I don’t ever want to go through it again because it was really challenging. However, it’s made me better in a lot of ways and help push me beyond my insecurities.’
Ms Schiller said: ‘I woke up very confused, not understanding why I was up on the following day versus six hours or so after a normal transplant surgery.
‘A lot of emotions were filled with all that because now I had new doctors. Now I had a neurologist, now I had a cardiologist coming to check in on me, as well as surgeons who did my surgery 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, now being bombarded with all this information, it was a lot of emotions just coming out. I was still hopeful, but it was a lot to process.’
Ms Schiller spent two weeks in the hospital, returning home with a wishbone-shaped scar stretching across her entire abdomen.
She also suffered debilitating lower back pain, as well as migraines from the strokes that were so intense they would stretch on for up to 12 days at a time. But immediately after she got home, she started working to get her strength back with short walks on the treadmill.
Pictured here is Ms Schiller’s scar from her liver transplant
Ms Schiller told DailyMail.com: ‘Each day got better. Each day, it was kind of an amazing thing. I could see my skin color come back to life. My eyes started to come back to being white. The fluid started to leave my body.
‘When your body starts to deteriorate so quickly, it’s like a plant that starts to die. But then you decide to give it one more shot and start to water it and give it love and whatever it needs.
‘That’s what your body does; it comes back to life and blooms again after you receive a new organ.
‘That was pretty fascinating to see, to watch my body come literally back to life again.’
In the months following her transplant, Ms Schiller was able to use Pilates ‘to fully rehabilitate my core as well as my entire body,’ but it took about a year to ‘kind of 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 antirejection medications to prevent her body from rejecting the new liver and receives blood tests every month to check her enzymes.
She also avoids alcohol and steers clear of grapefruit and pomegranate because they interact with her antirejection medications.
She said: ‘I basically put myself back together again.’
‘I don’t ever want to go through it again because it was really challenging. However, it’s made me better in a lot of ways and help push me beyond my insecurities.
‘It really helped me realize how precious life is.’
