Dear Family and Friends,
As many of you already know, Sue (Otness) Colas has been battling non-alcoholic cirrhosis of the liver (NASH) for several years. We are very happy to report that Sue and her husband, Evens, traveled to the Mayo Clinic Transplant Center in Jacksonville, Florida on December 21 for her liver transplant. The life-saving transplant was successful but now there are some complications that may result in a second transplant.
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
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.
October 26, 2013
Interesting article about Environmental Toxins and Liver Disease:
October 8, 2013
On December 21 We got the call!
The surgery started at 2:30am on December 22 and I was back in the room by 9am. A few hours later, they had me on my feet! Amazing!! I will add more later but as of now, all is well, we are approaching the magical Day 21 when they will remove the staples and send us HOME!!!
What a wonderful year 2012 will be!
We still need funding for the 4-month return visit, which will be several days here at Mayo in Jacksonville and medications.
Thank you to all of our friends and family who have helped us go into recovery with a minimum amount of stress.
Sue and Evens Colas
October 8, 2013
Monthly Tansplant Checkup – September 2011
My friend, Marcia and I head north to Mayo in Jacksonville.
My friend, Marcia and I went up to Jacksonville on September 29-30 for some annual testing and meetings. Of course, it starts with the blood tests. We got there at exactly 8:30am – right on time. I was called in fairly quickly and had a nice lab guy who was good at getting the blood out of my arm.
Next we went to the Cardiac section for the Dobutimine test. I had taken my nadolol the night before, not even thinking abou the stress test. So, they had to give me a couple extra injections of something to get my heart rate up to 142. But we made it!
Next was the meeting with the Social Worker. She is a nice lady and we finished everything pretty quickly.
Last thing for the day was a MRI. It went fine. I could tell that there were a lot of toxins being injected between the heart stress test and the MRI contrast. I felt pretty rough.
Marcia and I rested for a little while then Marcia thought we should see a movie. It sounded like a good idea to me so we chose Planet of the Apes – a new version. It was excellent – the special effects were awesome.
Next day, just a mammo and meetings with the transplant nurse and two of the transplant doctors.Then we headed back to Palm Bay.
A huge THANK YOU to Marcia for going up with me. We had a lot of fun and time went fast for us.
Hugs to all,
October 8, 2013
How this craziness started . . .
Cirrhosis of the Liver Is Not Exclusive to People Who Drink Alcohol!
People will often ask me if I drink alcohol and that’s how I got cirrhosis. Well, no . . . I don’t drink. We used to get a 6 pack of beer for after mowing the lawn or for guests and two years later, there were still five bottles left. Strong drinks were always out of the question. The taste just doesn’t do anything for me.
So, what happened? The doctors could never pin-point what happened but after reading about NASH (Non-Alcoholic Cirrhosis), it could be the chemicals we used on the farm in Montana. My brother and I used to play in the truck-loads of seed grain (treated with mercury)and run under the crop duster plane that was spraying for weeds or bugs. We had a powder to dust the dogs with to kill ticks and fleas and we would shake it on then rub it in with our bare hands. That was DDT. All these toxins can raise havoc with a liver.
Another possibility is over-use of antibiotics. I used to get a lot of sinus infections. About every six weeks or so I would have to go in for an infection and the treatment was always the same – antibiotics.
(Finally I went to an Acupuncturist who gave me Chinese herbs to drink and needle treatments and I haven’t had a sinus infection since then.)
When we went out to NY on a temporary assignment with my former husband’s job in the late 80s, all four of us in our little family got bit by ticks and got Lyme Disease. That is also treated with megadoses of antibiotics.
Then to top it off, I have always been a little overweight. That extra 30-40 pounds stressed my liver, too.
There are a lot of great articles about this. I will find some and post them at some point in the future.
October 8, 2013
It started out as a normal day . . .
and turned out to be a dry run!
It started out as a normal day. I finished my shower and shook some poofy smelling cleaning powder into the tub to clean it out. It was my alone time. Kind of nice to just have the quiet.
Then the phone rang.
I figured one of the kids would get it.
It rang again.
What. Four of us living in the house and I’m the only one who can answer the phone?
It rang again.
Then I heard Paul, our 17 yr old, pick it up and say hello in broken English. He and his sister, Melissa had just arrived in the U.S. from Haiti last September. Melissa had pretty much mastered English but Paul refused to speak unless forced so he was hard to understand.
Paul knocked on the bathroom door. "Eets fo you." I asked him who it was. "I dono hes as fo you." Man, I didn’t want to leave the quiet of the bathroom but thought I better get the phone.
I wrapped a towel around me and opened the door, thanked Paul for answering the phone and greeted the person calling.
She verified it was me and then said there is a liver. I thought it was about the liver I bought yesterday. Was it no good?
Then it all started coming together! She was calling to set up the transplant! "You have a liver for me?" I headed for the front door to tell Evens. "EVENS! They have a liver for me!" I must have thanked the lady a dozen times before she finally got me off the phone.
I started for the bedroom, then turned toward the front door then kitchen, then front door. I didn’t know which way to go. I went back to the front door, still wrapped in my towel and said to Evens, "Did you hear me? They Mayo Clinic has a liver for me. We have three hours to get up there."
Poor Evens looked like a deer in headlights. We had met in the spring of 2006. At that time I was losing copious amounts of blood but no one seemed to know what to do about it. Evens said that we had to get the best gastroenterologist in the country. No games. Already the GI doctor I had gone to said that the best thing was to cut out the bottom half of my stomach. Although he didn’t know why I was bleeding in my stomach, he was all ready to cut. NO WAY!!!
Through some research and phone calls, we found Dr. Christopher Gostout at the Mayo Clinic in Rochester, MN. We went there and Dr Gostout diagnosed the root of the problem to be non-alcoholic cirrhosis of the liver. At that time, he said that eventually I would have to have a transplant but would have to jump through some hoops in the mean time.
So here we were, five years later, After 250+ units of blood, about 30 endoscopies and argon gas coagulation, two TIPS insertions in the portal vein of the liver, five years of encephalopathy (which almost drove Evens crazy), and to top it off, 5 years of pain. It was all going to end and I could get my life back. Evens wouldn’t have to worry about me wandering off . . . any yet I was somewhat calm.
I had to bring Evens back to earth, he was stunned. I said I needed him to take a shower and I would pack some things in the suitcase. A half-hour later, we slid ourselves into the black car, that had no air conditioning and bald tires. We didn’t have any problems, just too hot in that car, even with the windows open.
When we got to the ER at Mayo, it was 2:30pm. The staff was fast at getting us checked in and up to a room. When we got up to the room, there was a line of nurses, lab techs, etc all waiting in line for their turn at me.
There was a chest xray, blood tests (20 tubes plus a small one for infectious disease screening), shower with special soap, and a lot of other fun and games. Then we waited. They gave us a ‘soft time’ of 9:30pm. That means that is the time they might possibly start the surgery. They said that when they give us a ‘hard time’ it means that the surgery will definitely take place at the given time.
At 7:30pm the Physician’s Assistant came in and said that the surgeon had determined that the liver was not suitable for transplant and that we are free to go home.
Well, that was a let down but, on the other hand, it gave us more time to prepare. We didn’t expect to be called until October or later. So, we rested for about a half hour and then left for Palm Bay.
We got home at about midnight that night. Exhausted, yet more hopeful and knowing that we were in the radar.
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October 8, 2013
hi Sue-enjoyed reading your story and hope all is going well, I have a question--was your transplant at Mayo on 12-21-11?? I had a liver transplant at Mayo on 12-26-11 and went to the Gabriel House on 1-1-12.
Kathryn Felder, Fernandina Beach, FL
October 8, 2013
sue, you dont know me but my husband is Barry Barley. I lost him in April.. He also had nash. The doctor in birmingham said he would never make it through surgery. I am happy for you and your family.. Good luck
kay barley- widow of barry barley
October 8, 2013
Sue-Been thinking about you since hearing about your illness. I pray the Lord's peace for you and your donor's family. Gary
Gary Dale Missoula,MT
October 8, 2013
You can do it!!
October 8, 2013
You're going to do just fine Sue as there are many people, some of whom don't know you yet, who will be willing to help out in your time of need. The technology and medical procedure is tried and tested and medical miracles happen every day. Just ask me, kidney transplant recipient (from my dear sister) on July 17, 09. I appreciate every moment of life and I'm sure you will to. I also appreciate meeting you and Evens. Your new friend, George White
George White, Melbourne, Fla
October 8, 2013
Good luck with your fundraising, Sue!
October 8, 2013
Good luck with the fundraising campaign, Sue and Evens. Keep on smilin'
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