Dear Family and Friends,

This article, printed by Sue’s hometown newspaper, The Choteau (Montana) Acantha discusses the road less traveled that Sue and Evens have been journeying down.

The continuing care, cost of housing, meals, travel, co-pays, and other expenses not covered by insurance are adding up and they can use your help.

Former Choteau woman receives liver transplant

By Melody Martinsen
Acantha editor

Former Choteau resident Sue (Otness) Colas, who now lives in Palm Bay, Fla., received the best present in the world for Christmas: a new liver to replace hers, which was severely damaged by nonalcoholic cirrhosis (NASH).

“Mentally, I feel probably 85 percent better. There is still a ways to go,” Sue said during a telephone interview a couple of weeks after the surgery. ÒI feel more alive. I’m anxious to get on my feet and go running.”

Colas, 53, has been battling NASH, a progressive illness, for several years, but her disease in late 2011 had progressed to the point that her doctors at the Mayo Clinic in Jacksonville, Fla., put her on a waiting list for a liver transplant.
After one false alarm last August, when Sue thought the Mayo Clinic had a liver for her, she was reluctant to get her hopes up though she never lost faith that a transplant organ would become available in time.

At about 3:30 p.m. on Dec. 21 Ñ their wedding anniversary Ñ Sue and her husband, Evens, at home in Palm Bay got a call from the Mayo Clinic, telling them to be there by 6:30 p.m. They grabbed Sue’s go-bag and jumped in the car for the three-hour drive.
After Sue checked into the clinic, the transplant team immediately prepped her for a 2:30 a.m. surgery, and then she and Evens waited for the final okay that the transplant was going to happen. At 1 a.m. on Dec. 22, the surgical nurses came in and told Sue that the surgery was a go.

By 1:30 a.m., she was in surgery, and by about 3:30 a.m., Evens says, the surgery was done and everything had gone well. “I was exhausted and I’m still exhausted,” he said during the same telephone interview.

Evens said Sue was back in her room by 6:30 a.m. and by 7:30 a.m., the nurses had her sitting up in a chair. By 6:30 p.m. that evening, they were making her walk outside in the hallway.

“I couldn’t believe it,” Evens said. “Sue went through it, no problem’ and in two to three days, she was looking fine. A week after the transplant, he said, her memory and thinking ability started to clear up and improve, reflecting mainly, that the new liver was cleaning toxins out of her blood and allowing the blood to adequately oxygenate her brain.

“With all of that, Sue’s a sharp cookie,” Evens said. “Most people didn’t even realize she was sick. To just look at her, she looked fine.”

Yet Sue suffered from many of the symptoms of liver failure, including hepatic encephalopathy, which manifests itself in Alzheimer’s like symptoms, and many physical symptoms that affected her energy level and her ability to get through the day.
Evens says the change in Sue since the transplant has been amazing. “I’m seeing the real Sue again,” he said.

Sue says she is already feeling so much better. “I feel like I could actually multi-task now,” she said.

She is adjusting to the anti-rejection drugs that she will have to take for the rest of her life. She started out on three drugs right after the surgery, but eventually will be weaned off onto just one permanent medication.

“Anyone who donates organs is an angel,” Sue says.

The donor of her life-saving liver was a young woman in her 20s who died in a car accident.

“I’m going to be writing a letter to her family,” Sue said. If the donor’s family chooses, they could contact Sue, and, if they do, she hopes to be able to schedule a get-together in their daughter’s honor.
Immediately after Sue’s surgery, she and Evens stayed for 21 days at the Gabriel House of Care, a residential facility where transplant patients recuperate. After that, she and Evens headed home to Palm Bay, where she continues to recuperate.

She has had one setback, the development of a complication called “ascites,” the accumulation of fluid in the peritoneal cavity, causing abdominal swelling.

She has been back to the Mayo Clinic for reevaluation and as of Jan. 27 her doctors have told her that the problem will either clear up on itself or, worst-case scenario, she will have to be put on a list for another transplant with a more compatible organ.

“At this point, we are in a wait-and-see pattern,” she said, adding that she was also waiting for results of a sonogram of the vessels that were grafted to the new liver.

The cost of transplantation is expensive. Even with insurance, Sue has many uninsured transplant related expenses, such as: travel and relocation, doctor visits, co-pays and deductibles, and the costly immunosuppressant medication she will take for the rest of her life.

Evens is Sue’s primary caregiver and he works several jobs to ensure that they are able to stay in their home, but he is presently taking time off to help with her recovery.
“We are looking at weekly trips to Jacksonville, and if I have to have a second transplant, then we will have at least four to five weeks of expensive room charges, meals, etc.,” Sue said. “We are really going to need help with these expenses that are not covered by insurance.”

Tax-deductible contributions can be made in Sue’s name to HelpHOPELive (formerly NTAF). If you wish to make a donation, make checks payable to HelpHOPELive. Please, note in memo section “In honor of Sue Colas,” and send to: HelpHOPELive, Two Radnor Corporate Center, 100 Matsonford Road, Suite 100, Radnor PA 19087.

For credit card contributions, call 800-642-8399 or select the DONATE NOW button.

Sue grew up on a farm north of Choteau with her parents, Shirley and Les Otness, and her siblings. Her mother now lives at Skyline Lodge in Choteau.

She attended Choteau Elementary School and graduated from Choteau High School in 1976. She then went on a cultural exchange to Brazil through the AFS organization, spending a year as a senior at a Brazil high school and living with a Brazilian family.

When she returned to Montana, she worked for a few months as a fill-in staffer at the Teton County Appraiser’s Office, before heading off to Montana State University, where she majored in agriculture.
Love, however, interrupted her studies and she got married before finishing her degree. She and her husband, Gerald Pattyn, were married in 1979 and had two children, Karen and Karl, in the mid-1980s.

They traveled some and lived in Tucson, Ariz., New York City, and Longmont, Colo.

At stay-at-home mom then, Sue did a lot of volunteer work and, with Gerald, operated a directory publishing business for 15 years.

After their divorce, Sue stayed in Longmont, where she met Evens. Her liver disease began causing symptoms in 2006, and a trip to the Mayo Clinic in Rochester, Minn., came back with a diagnosis that she couldn’t believe at first.

Her doctor, she said, “came back the next day and said that I had cirrhosis of the liver. I said, my God, I don’t even drink.” The physician explained that nonalcoholic neopathic hepatitis, which is not infectious, is not related to drinking alcohol and its causes are not fully known. He also said that she would eventually need a liver transplant.

The disease caused Sue to bleed internally and to endure two surgeries to put shunts in her failing liver.
During a five-year period, Sue received more than 350 units of blood.

Finally, in October 2010, she was put on the transplant list and stayed on it for 14 months. She went through the three-week screening process at Jacksonville, she said, “and then we started waiting.”

By that time, the illness had disabled Sue, because the her blood was no longer healthy enough to supply her brain with adequate oxygen. “I was stumbling around thinking, why can’t I get things, why can’t I understand what’s going on around me,” she said.

During that time, she was going to the doctor 10 or more times a month.

Evens, a professional song writer and guitarist, set up a recording studio, “Paradise Sound Arts,” in their home so that he could continue working while she was ill. “The recording studio has been a Godsend for that,” she said.

Finances continue to be a struggle for the couple, but they are hoping that royalty payments for songs Evens has sold to several television shows will start coming in and that donations will help too.
__________________________________________

Thank you in advance for your generous contribution to Sue Colas through HelpHOPELive.