It's a far cry from where she was just a year ago.
• • •
It was June 2012 when Boopie, who has arterial fibrillation (see story on page 3 for more information) saw Massac Memorial Hospital cardiologist Dr. Bharat Patel for her regular checkup. The next day, she received a call to immediately go to the hospital for lab work because blood tests showed her liver enzyme level was over 1200; the normal range is 35.
"I never smoke or drank in my life," Boopie said.
Over the next two months, a barrage of blood tests, a liver biopsy and CAT scans, along with visits to other doctors at Vanderbilt Medical Center, followed. The biopsy confirmed doctors' suspicions that she had autoimmune hepatitis. According to www.mayoclinic.com, autoimmune hepatitis is inflammation in the liver that occurs when the body's immune system attacks the liver. While the cause isn't clear, some diseases, toxins and drugs may trigger it. When left untreated, it can lead to scarring of the liver, also known as cirrhosis, and eventually to liver failure. When diagnosed and treated early, it can be controlled with drugs that suppress the immune system. A liver transplant may be an option when autoimmune hepatitis doesn't respond to drug treatments or when liver disease is advanced.
Except for a Clostridium difficult bacterial infection or C.Diff, a bowel infection "that made me feel terrible," Boopie, couldn't tell anything was different. "I felt great," she said, even to the point of going to Knoxville to watch her granddaughters for three weeks.
But shortly after her return home the beginning of September, the infection was taking its toll and she was getting weaker.
"We don't know how she got C.Diff, but she had to be on additional medicines to treat it and her liver had to work even harder to process the medication and she was already having symptoms of her illness, too," said her daughter Karen Hare, who along with her husband Cecil, is a nurse in Knoxville. "I think it probably just intensified the symptoms once she started getting sick."
On Sept. 10, Boopie had trouble walking off her porch. She called her daughter. Karen was in Metropolis that night and stayed for two days.
"I kept getting worse," Boopie recalled. Mitch was about to go west on a hunting trip he'd been planning for a year. She tried to convince them she could stay at home. It didn't work. She went back with Karen who set her up with Knoxville specialists.
By Sept. 25, Boopie was back at Vandi meeting with hepatologist Dr. Roman Perri who told her she needed a liver transplant and if she didn't get it soon, she was going to die. Over the next five days, teams of doctors saw Boopie twice a day. She underwent every test imaginable to rule out other problems she might have and to make sure she was suitable for the transplant. "With my age (72 at the time) and my heart (the afib), I wasn't sure," she said.
The team of doctors has to vote on whether a patient is a transplant candidate. While age is considered, numerous other factors are taken into account. She was put on the transplant list on a Friday. In the meantime, she was admitted to Vandi after becoming ill after a heart cath. Mitch and Karen alternated 12 hour shifts to stay with her, catching their sleep at an extended care facility because Vandi's hospitality house was full. Her best friends Phyllis Frailey and Doris Lawson spent five days with her, allowing Karen the chance to go home.
One morning, "I was standing outside her room and saw hepatologist Dr. Chan Chung. He got a call and I heard him say, 'That's great,' and then walked into another room," Mitch recalled. "About 10 minutes later, he walked into her room and said they had a match. He told us he was so excited he couldn't tell her."
The average transplant wait for a liver is nine months in Nashville. The national average is 11 months. The Mitchells have a friend whose wait was over a year in the St. Louis area. Boopie had been on the list for nine days.
"Probably what I learned the most through all of it is how faithful God is," Karen said. "It was so difficult to know that someone died and what their family was going through, it was hard for us to celebrate. Dr. Chung looked around the room and said, 'This is a good thing, you would be happy.' It's just so bittersweet — someone has lot a family member. How do you celebrate that? It's tragic, but you realize that person or family has given a precious, precious gift and you're grateful for that and you raise that it's out of our hands and a Power greater than us makes those choices and He is going to allow your mom to live because of the generosity and unselfishness of someone else."
The first person Boopie called was her grandson Dalton, the son of Patrick and Marla Mitchell of Metropolis. It's one of the few clear memories she has for those next 30 days — the rest are a fog or nonexistent.
"When your liver quits functioning, it doesn't take the toxins, in her case ammonia, out of the system," Mitch said. "It starts affecting your brain and fluid builds up."
• • •
After testing the donor liver, Boopie was taken back to surgery at 9:30 p.m. Oct. 22. Mitch and Karen waited for the next four hours. Half way through, they got the report that the old liver was out and the new one was in. Two hours after that transplant surgeon Dr. Seth Karp, the director of Vandi's transplant program, came to tell them "'it was a perfect fit, it couldn't be more perfect. Her liver began making bile before we closed her up,'" Mitch recalled. "I asked him what her liver looked like. He said it was shrunk and black like charcoal."
Boopie spent the next three days in ICU before being moved to progressive care. After several days, she was moved to a rehabilitation unit. That, Mitch said looking back, was a big mistake. While her new liver was working, she refused to eat and grudgingly drank nutritional supplements; it began taking a toll on her strength. She became so weak she couldn't sit up, roll over, stand or brush her teeth. She was in rehab for a week before an infection landed her back in the hospital.
Using primarily email, Karen kept friends and relatives around the United States and Canada up to date almost daily on her mom's hospital stay. After being in Nashville a total of 31 days after the transplant, Karen told Mitch they needed to get Boopie out of the hospital or she was going to die. She had been put on a feeding tube and the doctors made a deal with her that if she drank the nutritional supplement, they'd take the tube out and she could go home. While she was agreeable to do whatever the doctors wanted, by that point she didn't want to do anything. She and Mitch went to Karen's on Nov. 16.
• • •
Once at Karen's, Boopie set a goal for herself — she wanted to walk at her granddaughter Destiny Mitchell's graduation from the University of Tennessee Knoxville. Three to four home therapists came daily for a month. On Dec. 15, Boopie had to use a wheelchair but she saw Destiny graduate and was able to stand long enough for pictures. But she still couldn't do anything for herself and she still refused to eat; she lost 20 pounds. Her skin became paper thin.
Following the surgery, Boopie had to go back to Vandi every 30 days for followups. In addition, there were two to four blood draws daily that had to be analyzed — Karen would draw the blood, Cecil would take it to the lab at work and the lab would send the results to Vandi. Mitch said that about half of liver transplant patients develop diabetes.
Mitch said if it wasn't for Karen and Cecil being nurses, this would have been especially difficult. Karen's job gave her the time off needed to take care of her mom. "It takes a lot of care — it's not just they get the transplant and everything's good. There's the constant checking of temperature, blood sugar, blood samples, doctor visits," he said.
When home health ran out, Boopie began her treatments at the Patricia Neal Rehabilitation Center in Knoxville — three items a week for six weeks. She said she hated every minute of the treatment and the exercises she was supposed to do at home, but recognizes that if it wasn't for them and the home health therapists, she wouldn't function like she does today.
After weeks at Karen's, there was one thing holding back Boopie's progress — she still wouldn't eat. Almost nightly, Cecil would give her a pep talk when he came home from work. But it took a stern talk from Mitch for things to click for Boopie — it was a reminder of what everyone from her family to her doctors to her therapists to her friends had done and sacrificed to help her become better but all of it was for not unless she made the choice to get better herself.
"He's been wonderful to me through it all," Boopie said of her husband of 54 years.
Within two days, Boopie became a new person. She began eating and taking part. A cook at heart who had forgotten how, she began spending more time in the kitchen. Her first dish, with assistance from granddaughters Emma and Ava, was cornbread. She told Cecil that when she made him fried chicken, then he'd know she was feeling better. That happened around Valentine's Day.
Three months after their arrival at Karen's, around mid-February 2013, Boopie and Mitch came home.
"I didn't want anyone to know," she said. "I was scared — I couldn't remember where we lived, what the house looked like. Patrick, Marla, Dalton and a couple of others were the only ones who knew."
• • •
Boopie stayed in Vandi for 40 days total between her infection and transplant surgery. She was away from home for six months.
"We went into this never thinking there'd be a transplant. We thought they'd give her medications and she'd be fine. But it'd progressed and the medicines couldn't stop it," Mitch said.
" The prayers is what saved my life," Boopie said. "So many were praying for me, sending flowers, gifts, the phone calls. I got 250 cards. Cards would brighten my days. I'd always been one to send them and Mitch would complain about the cost. After getting 250, he says to send them on. It was God's will; I would have never made it. The doctors, even today, say 'You're a miracle. We'd never thought you'd live.' Karen tells me, 'God saved you for a reason.'"
Mitch said Boopie never understood how sick she was. He recalled a doctor telling her at an exam a few months afterward, "'You had me worried for a while.' Boop looks at him and said, 'Well, what about?' She was really, really sick and weak."
Boopie still can't get over the number of people — friends, acquaintances and strangers — who told her they prayed for her during her illness and continue to do so during her recovery. "The people here have been really supportive," Mitch said. "We're very thankful to the community for their support, that makes it a little easier."
Boopie also credits her own angels — her husband, their children, their children-in-law and their grandchildren — for their part in her recovery. Along with Mitch, Karen and Cecil, 3-year-old Ava and 8-year-old Emma did what they could to assist from making sure she drank her milk to opening her cards. Patrick and Marla came on weekends. Destiny, a nursing major in Knoxville, stayed at the hospital with her grandma. Dalton, who was then a junior at Massac County High School, and his friends visited when possible and prayed for her before every game they played.
"It's been quite a journey," Karen said. "She's a remarkable woman. I've been a nurse for 30 years. I have seen very few people get as close to death as she was and survive it. Her body system had failed to the point to where within a few hours she would not be alive. God's just not done with her yet."
• • •
With the quickness of Boopie's illness, the Mitchell family had little time to prepare But experience has taught them greatly about the care of a loved one. Mitch had the following tips for caregivers:
• "Patience, hand-in-hand with understanding, is the biggest thing you've gotta have. You've gotta have the understanding that patience wears thin for the caregiver and patient."
• "The more information you get, the better off you are. Be as prepared as you can be."
• "Prepare physically to keep your strength up."
• • •
Boopie hasn't recovered her full strength. She has to take anti-rejection medicine six times a day for the rest of her life — which prohibits her sun exposure. Except for a spot on her right side, her stomach area, which was filled with 50 staples, has no feeling. She also has lab work done regularly.
She sees Perri every three months and if things go well at her next appointment, it will be six months. Her entire care team at Vandi — Perri, Chung and Karp's nurse practitioner Chris Webb — have become more than friends. "It's a family reunion when we go. They're all wonderful to us. We love them like family," she said. "When I saw (Perri) in July, he was my progress exceeded what he thought I'd do. They saved my life."
"God gave us the best when it came to her physicians, that's for sure," Karen said.
• • •
There's one more person who is saved Boopie's life.
And she may never know whom he or she was. But she has written the family a thank you note.
"Without a donor, this wouldn't have happened," Mitch said, watching as his wife walked from the room. "Organ donation can help a lot of people. You have the ability to help others by being a donor. This is an example of what donorship is all about."
Ironically, Karen was taking organ donation course as part of her continuing education while her mom was in the hospital. Through that information, she learned that from one person, up to nine lives can be saved through organ donation, plus numerous more can benefit from tissue donations like corneas, bone and tendons.
"I think there's an unspoken fear people have — that if they agree to be a donor God may strike them down. It's an unrealistic fear," she said. "We don't need our parts once we're gone but so many can benefit. There's just such a blessing in our bodies when we're done with them."