Dale Winter is already a survivor
Staff writer
Dale Winter needs a new liver. At 47, Winter has a pacemaker, has had two heart procedures, is diabetic, and has non-alcohol-related cirrhosis of the liver.
Although Winter sometimes feels sorry for himself, he feels lucky.
"I've beaten the odds already," said Winter. "It seems like every step of the way when there's been a need, it's been provided for in ways we didn't expect."
Winter's second heart procedure was in November of this year to get him ready for the liver transplant.
"They don't want any complications," said Winter. And according to Winter, he would have failed the stress test needed to be ready for the transplant.
The first heart procedure was open heart surgery in 1972 at KU Medical Center. Both heart procedures were to correct a birth defect, pulmonary valve stenosis, which is a narrowing of the pulmonary valve.
Normally the pulmonary valve opens to let low oxygen blood flow from the right ventricle of the heart to the lungs where the blood gets oxygen. Because of the narrowing the right ventricle has to pump harder, and this can lead to enlargement of the right ventricle.
Winter received a pacemaker in the summer of 2003, and that helped correct an irregular heart beat.
Another of Winter's challenges has been the diabetes he was diagnosed with in November during a visit to Omaha. He has been placed on medication to control the diabetes.
Before deciding on the option of a liver transplant, Winter and his family tried homeopathic medicine.
"I had stomach problems, then heart problems and didn't know why I wasn't getting better. It's better to know the problem," said Winter.
Winter's doctor in Wichita recommended he go to Omaha to the University of Nebraska Medical Center. According to Winter, it is one of the top hospitals for liver transplants in the world.
Winter said that UNMC has a 90 to 93 percent survival rate for liver transplant patients after the first year, however, of the seven percent died from non liver related causes.
Rachel Winter, Dale's wife, said, "the hospital itself is very warm and helpful, very caring and friendly."
"They give you hope there," said Winter.
Winter and his family don't know when he will be called about a liver transplant, so they aren't able to travel very far from home, and they have a plane on stand-by in McPherson for a spur-of-the- moment trip to Omaha.
A MELD score (Model for End-stage Liver Disease) is used to determine how soon Winter will receive a liver transplant.
It is like triage, ranking patients by how sick and in need of a liver transplant they are. The score ranges from six which is the least sick, to 40 which is the sickest, and scores may fluctuate over time.
Winter's current score is about 15, which is in the mid-range. He will be tested every 90 days to re-certify his score.
The scores determine who comes first on the liver transplant list. The only instance in which how long a patient has waited counts is if there are two people who have the same score.
"Since I'm on the transplant list, I could be called any time of the night or day," said Winter.
When the call comes, Winter and wife Rachel can be in Omaha in about an hour and a half, weather permitting.
The Winters have two children. David is in eighth grade and Erin is a fourth grader.
Rachel says they have had lots of offers from friends and family to help with the kids while they are in Omaha.
The surgery itself will take anywhere from six to 12 hours.
"It's one of the hardest surgeries to endure," said Winter.
Organs also may come from living donors.
The liver is one of the few organs that continues growing throughout a person's life, and therefore a donor would be able to re-grow up to 90 percent of the donated organ, according to Rachel.
Any donated organ will have to come from a healthy donor of comparable size, with a compatible blood type.
After the surgery, Winter and Rachel will have to stay in Omaha for four to six weeks while Winter's body adjusts to the anti-rejection medications.
Rachel will have to be on hand the entire time to help. A liver transplant patient is required to have a full-time caregiver following the procedure.
The medical center told the Winters to plan on expenses of $5,000 to $10,000 for the stay. The hospital has some housing in the area, but it may not be available.
The private flight to Omaha and post-surgery housing are just two of the many expenses the family will incur.
They will have the expense of their deductibles, but fortunately the family's insurance and co-insurance will pay for the medical expenses.
The Winters already have made seven trips to Omaha since February, and will continue to have to travel there.
Luckily, Winter has a cousin who lives about 45 minutes from UNMC, and they have been able to save some money on lodging.
The Winters' church is trying to help with some of the their expenses. Parkview Mennonite Church held a chili dinner in November and raised a little more than $2,000 according to Eleanor Jost, Parkview member. The Mennonite Mutual Aid Association (MMA) also has a grant that matched part of the funds.
Jost also says the church will probably look for other fund-raising ideas.
"Our church has been very supportive," said Rachel.
There has also been an account set up at Emprise Bank, Dale Winter Medical Fund.
Because of the illness, Winter has resigned as a bus driver for USD 410, and has recently applied for disability. He that the process takes about five months and if he is not awarded disability the first time, there is an appeal process.
The Winters say after the operation, their transplant coordinator expects Winter to be able to resume normal activity within a year. They told the coordinator he used to ride bikes and walk every day, and she was confident he'd be able to do those things again.
In the meantime, Winter is trying to stay as strong and fit as possible. He's eating healthy foods and trying to keep a positive attitude.
One of the many side effects of the liver disorder, is fatigue. He doesn't feel good, and isn't able to help around the house as much, according to Rache.
"I need to keep the family going, and make sure things get done," said Rachel.
Winter used to do all the cooking, cleaning, and took care of the kids.
"Sometimes, at first I felt sorry for myself. Now I'm just kind of looking forward to it, not that it's going to be a walk in the park," said Winter.
He and son David also have had to give up one of their hobbies.
They were members of the MAC Track Train Club, and used to volunteer on the tourist railroad in Abilene during the summer.
Besides fatigue, Winter suffers from itching, being cold, and a deterioration of mental capacities caused by the toxins in the body.
"It's been a hard thing to watch my body deteriorate from what I used to be able to do to what I'm capable of doing now," said Winter.
He tries to look on the bright side.
"Maybe by what I'm going through I can have more empathy for others," he said.
Winter says that knowing other survivors has helped him get through some of the tough times. He has attended a liver transplant support group, and reminds people that, "even the bad stories about transplants are from survivors."
"It's the fear of the unknown, but just the faith in God, knowing He's in control helps," added Winter.
At Bible study, Winter says after listening to other prayer requests, if he could choose his problems, he would still take the ones he has.
"It could be worse," he said. "It could be the death of a spouse."
