ORIGINALLY WRITTEN DON RATZLAFF
The family of Dale Winter knows exactly what it wants for Christmas this year.
A new liver.
The 46-year-old Hillsboro man was told Dec. 1 that he has been placed on a national waiting list for a liver to replace the one inside of him that has been slowly deteriorating.
According to the transplant team at the University of Nebraska Medical Center in Omaha, the transplant will happen within the next six months or so-as soon as an appropriate donor emerges.
“The phone is always on, and when we leave the house, we take the cellphone with us,” wife Rachel said last week.
“They can call you at any time,” Dale added.
That Dale recently was added to the waiting list is an odd mix of good and bad news. It’s good news that he’s now eligible to receive a liver for transplant-but to qualify, his physical condition had to decline to the required level of need.
It’s taken a little more than two years to get to this point. Dale said he first went to the local family practice clinic in 2002 because he was having stomach problems.
“I thought it was something I was earing, but they couldn’t pinpoint it to that,” Dale said.
Based on the test results, the clinic sent him to a specialist in Wichita for more tests and eventually a biopsy in mid-September.
“They didn’t know what they really had in Wichita, so they sent me on to Omaha,” Dale said.
The experts there diagnosed his condition as a precursor to cirrhosis, a disease usually associated with alcohol abuse or, to a lesser extent, a previous bout with hepatits B.
Neither was in Winter’s history.
“It’s not hereditary either,” He said. “It was just one of those things I had.”
Because he wasn’t feeling any better on the medication he was prescribed, in February of this year, the Omaha team did another liver biopsy.
The results of the biopsy confirmed that Dale was dealing with primary biliary cirrhosis-but that he wasn’t sick enough yet to be considered for a tranplant.
To qualify for a tranplant, a patient has to score at certain level on what is called a MELD Score, which stands for the Model for End Stage Liver Disease,
The MELD Score is based on a combination of test results that determines the severity of liver disease and the likelihood of survival if a liver transplant is not conducted.
“The higher the count, the more you have to have blood tests done,” Dale said. “The need basis (for a transplant) is greater.”
As the Winters waited for Dale’s score to reach the qualify level, the symptoms grew steadily worse. He increasingly became tired more quickly, he developed diabetes and severe itching.
He also began retaining fluid-which makes the heart and kidneys work harder, too.
“They’re all three involved,” Winter said of those critical organs. “I had to be hospitalized quite often to just drain fluid.”
Last January, he resigned his maintenance job at the local school because he didn’t have the physical reserves to continue the work. He also had given up his avocations as a volunteer firefighter and football official.
“It’ just really limited me compared to what I used to be able to do,” he said. “I can’t do physical work. It’s been slowly going downhill ever since the whole thin started. I just get tired easy.”
Eventually, even less-demanding routines became difficult on a given day-such as cooking the evening meal for the family to participating in a model-train club with his son, David, now an eighth-grader.
“It’s kept me more homebound,” he said. “It’s not allowed me to do the things I used to be able to do.”
In September, Dale and Rachel returned to Omaha for a transplant evaluation.
“They stopped it because his ectocardiogram showed that his heart was not working right,” Rachel said.
Added Dale, “I would have had trouble surviving the tranplant because it’s a pretty traumatic thing for the body to take.”
Doctors performed a heart catherization and sent him home.
His liver condition also manifests itself in a loss of mental acuity. Earlier this month, he was hospitalized for five days because he woke up one morning totally unaware of his surroundings.
“The amonia level in his blood was too high,” Rachel said.
“I knew that woul be part of the symptoms, but I didn’t know it would hit that fast,” Dale said. “All of a sudden I’m just wheeling around in the hospital and it’s like, ‘What am I doing here? What happened.”
Added Rachel, with a smile: “They told him he lost his mind in the morning and got it back around 7 p.m.”
“Just in time for ‘Monday Night Football,'” Dale added, chuckling.
When the Winters returned to Omaha in late November for another evaluation, Dale passed.
The evaluation process is complex, invlolving not only his physician, but a team of professionals from fields ranging from psychiatry to nutrition to personal finances.
“And you have to have a caregiver who is committed to be with you during this time,” Dale said. “Then they get together and they vote whether you’re a good candidate or not to receive a liver.”
Now that he’s been approved, Dale’s name and condition have been added to a data bank-and a computer will decide when it’s his turn to be selected, based on his MELD Score.
Dale said his common blood-type-A positive-makes it even easier to find a matching donor. The donor must also be of similar height and weight.
In most cases, a donor emerges because of death-a fact that weighs heavily on Dale’s mind.
“It’s hit me several times that Christ died for me so I could have eternal life, and now someone else has to die for me so I can extend my life,” he said.
“That’s a hard thought to think of,” Rachel added.
But an alternate scenario exists, too.
“They also have what they call a living donor,” Dale said, “where a person can donate part of their liver. That can be at any time if that person wants to step forward and be a living donor. But it has to be a healthy liver.”
The Winters said doctors tell them that after transplanting a portion of a liver from a living donor, it will grow back to 90 percent of its original size-in both the donor and the recipient.
If a donor emerges because of a death, the Winters won’t have time to prepare themselves.
“Things have to happen quickly because we have a five- to six-hour window to get (to Omaha),” Dale said. “So we’ve contacted McPherson Airport and we’ll have a chartered flight out of McPherson to get there.”
But getting the call does not guarantee the transplant.
“Sometimes you show up and the live shows up, and it’s not good to use,” Dale said.
“The surgeon has the option to say, ‘This is not a good liver,'” Rachel added.
If doctors move forward with the transplant, the prospects for enjoying a normal life are extremely good-well over 90 percent.
“It’s not 100 percent, but it’s better (odds) than what I have right now,” Dale said.
Insurance will cover the cost of the procedure, but the Winters will be responsible for travel and lodging costs for several weeks of momitoring in Omaha after been dismissed from hospital care. The bill could range between $5,000 and $10,000.
The Parkview Mennonite Brethren Church has opened a medical fund in Dale’s name at Emprise Bank in Hillsboro to help the Winters with those expenses. Donations would be welcomed.
Rachel, who has continued her full-time teaching job at Hillsboro Elementary School throughout the ordeal, said people have asked how else they could help. If families find themselves with extra food after a big meal, the can bring it over the Winters’ for use on those days when Dale is too tired to cook.
“I know people are busy, and we don’t want to be a burden to anybody,” she said.
Even though the prospects for the transplant-and a full life after it-are high, the Winters will face physical and financial challenges in the meantime.
But they are taking life a day at a time.
“God will provide,” Rachel said. “He has shown us that along the way. He will open and close doors. What those doors will lead to, we don’t know.”