Heather Thomas survived a July she would rather forget to celebrate a Thanksgiving that should be unforgettable.

The former Williston resident who now lives in Dickinson just passed with flying colors her four-month check up at Rochester's Mayo Clinic following a liver transplant this past July 18. The surgery hopefully brings an end to medical issues that Thomas, 25, has battled since her teens. But as in many medical situations such as this, a life-saving procedure also presents new challenges, in this case for the rest of her life.

Sensitivity to light

Thomas' medical woes took a serious turn at age 15 as her family was moving from New Mexico to North Dakota.

"I got a really bad sunburn on my way up from New Mexico. It felt like a burning sensation and I swelled up really bad," she said. "I had blood blisters on my fingers." The family stopped at the Bowman hospital, where liver tests were conducted.

"My levels were so elevated, I was taken by ambulance to Bismarck," she said.

Doctors at that time diagnosed her with porphyria cutania tarda, a blood condition that affects your skin. Throughout high school, her family noticed whenever Thomas was out in the sun, she would swell and the burning sensation returned, she said. Just before her 21st birthday, she saw a physician for the swelling and burning symptoms, who then referred her to Bismarck hematologist/oncologist Dr. Ferdinand Addo. During her physical exam, Addo detected her spleen was enlarged.

"They don't understand how the spleen and the blood disorder are connected," she said. "They didn't feel (the spleen) was enlarged enough for removal at the time."

Thomas moved to Dickinson at the end of May that year and continued to see Addo at the former St. Joseph's Hospital Cancer Center in Dickinson.

In the spring of 2008, the Dickinson cancer center had since been closed, so Thomas had an appointment with Addo back in Bismarck.

Spleen condition

worsens

"The month prior to my appointment, my left side started throbbing with pain. The week before I was supposed to see him, it got so intense I almost went to the ER," she said.

Thomas works for the home health program at St. Joseph's and was talking with one of the nurses there whose family also was seen by Addo. The nurse told Thomas that Addo was coming to Dickinson, so Thomas called his Bismarck office to see if she could get in at his new Dickinson office location.

"When he found out it was me, he agreed to squeeze me into his schedule," Thomas said.

Addo did another ultra sound, during which the spleen was found to be enlarged enough to require removal.

"At that time, they also found a 2 centimeter lesion on my liver," she said.

Her brother, Michael, drove her to Bismarck's St. Alexius Hospital the next day, where more tests were done and the surgery to remove her spleen was scheduled for the following morning.

New diagnosis

When they removed her spleen, they also did a biopsy on her liver.

"That is when they found out I had cirrhosis of the liver, stage 4," Thomas said of the surgery on May 30, 2008. "They also found out I had been misdiagnosed. The type of porphyria I had is erythropoietic protoporphyria (EP)."

This type of porphyria is extremely rare, she said, and in rare cases can severely damage the spleen and liver.

Since Addo hadn't dealt with EP before, he referred her to the Mayo Clinic.

"They didn't know how to deal with me because there are so few cases around. They really didn't know what to tell me to do and there is no medication you can go on," she said. "There again, they did state at some time in the future, I would probably have to have a liver transplant."

The only thing the Mayo staff recommended her to try at that time was taking beta carotene so Thomas wouldn't be so sensitive to the light. But that didn't work.

"I could use 100 SPF and it really didn't help," she said.

Driving to visit her home health clients last year was painful because her hands were always on the steering well in the sun.

Thomas and her boyfriend, Nathan Bird, then move to New Mexico. She saw doctors there as lab work was done to check on her liver levels, but nothing was severe.

They moved back to Dickinson in December and everything was going fine, other than the sun exposure issue, until this past May.

Things get worse

"I started getting really lethargic. I had severe chest pain and stomach cramps. It was so bad I went to the hospital in Bismarck," she said.

The testing at Medcenter One again produced conversation about her liver.

"I used to have these red marks on my arm. They said it was a sign of liver failure," Thomas said.

She was released from the hospital and returned to work a few days later when she got dizzy and went to the St. Joe's emergency room.

"That is when they noticed there was some fluid around my liver," Thomas said.

The problems continued throughout June and she ultimately was readmitted to Medcenter One.

"While I was there, that is when they first told me I was at a meld of 16, the middle range," she said.

The United Network for Organ Sharing Web site states the Model for End Stage Liver Disease (MELD) is a numerical scale, ranging from 6 (less ill) to 40 (gravely ill), used for liver transplant candidates age 12 and older. It gives each person a ‘score’ (number) based on how urgently he or she needs a liver transplant within the next three months. The number is calculated by a formula using three routine lab test results:

*Bilirubin, which measures how effectively the liver excretes bile;

*INR (prothrombin time), which measures the liver’s ability to make blood clotting factors; and

*Creatinine, which measures kidney function. (Impaired kidney function is often associated with severe liver disease.)

The only priority exception toMELDis a category known as Status 1. Status 1 patients have acute (sudden and severe onset) liver failure and a life expectancy of hours to a few days without a transplant.

This past July 4, Thomas could only eat gelatin and crackers due to the pain and cramping, yet her abdomen was so bloated with fluid from her liver condition, she said.

Two days later back at work, she hit a curb with her car and popped a tire after again becoming dizzy. She returned to the hospital, where her former home health boss Tesha Jahner begged her to go to Rochester.

Back to Rochester

On July 7, she was airlifted to Rochester's St. Mary's Hospital, where they did more lab work and removed some of the fluid from her abdomen.

She was taken by ambulance to Rochester's Methodist Hospital the next day, where liver specialists again talked to her about a transplant. By then, her meld increased to 24.

"They did all of the preliver transplant education, but they hadn't put me on the list yet. The doctors had to meet and decide if I was at risk enough to be on the list," Thomas said.

Doctors met and put her on the liver transplant list on July 15, after which they moved her to the Gift of Life Transplant House. Given her blood type, she had to stay in Rochester to await a transplant.

Thursday and Friday were spent doing more transplant preparation tests while waiting for word of a donor liver while her parents were with her. On Friday she had left her cell phone in the vehicle, but doctors contacted her mother, stating a liver had been found.

It was too late in the afternoon to have surgery, but she signed the necessary paperwork and did more X-rays and lab work as they waited for the liver to arrive and test it.

At 2:45 a.m. on July 18, doctors prepared Thomas for surgery, which they told her could last four to six hours. The surgery, conducted by Dr. Charles Rosen, formerly of Bismarck, took only three hours. The surgery also involved removing her gall bladder.

Recovery begins

The surgery went without any complications, and her parents told Thomas her skin color started to improve within a few hours in the intensive care unit. She was up and walking and was moved out of ICU that same day.

She pushed herself physically to do what was necessary to get discharged.

" I didn't want to sit around and take my sweet time. They won't let you out unless you walk around. They make you walk laps around the nurse's station," Thomas said. "They have you build your strength up. They monitor your calorie intake to make sure you are eating enough."

Thomas was discharged back to the transplant house just six days after her surgery. There she was placed on a low-bacteria diet and took prednisone, which caused her to become diabetic, which is a common side effect of the drug.

As a result, Thomas had to give herself insulin injections for three weeks. Her bile duct was functioning properly, which allowed her bile tube and surgical staples to be removed after three weeks.

"While I was in the hospital, I lost 30 pounds and I've gained eight back," she said. "Within a few days, I was off all of the pain pills."

Her incision healed perfectly and there were no signs of her rejecting the liver, so she was discharged from the transplant house on Aug. 8.

Back in Dickinson

Thomas went back to light duty work on Aug. 10, as she pleaded with her doctors in that regard.

"I have more energy than I have had in year," she said.

Melinda Faulhaber is Thomas' coworker at St. Joe's and said before the surgery, Thomas' skin color was so dark, she looked like someone who suntanned all year.

"Everybody calls me a white girl now," Thomas said with a laugh.

She said St. Joseph's was really good at giving her the time off.

"They worked with me better than you could ask," Thomas said. "We're like a little family down there in the Home Health Department."

Upon her return to work, coworkers made her a sign that stated, "We're so glad to have the old Heather back with her new parts."

Faulhaber said before the transplant surgery, Thomas was so hunched over when she walked she looked like a very elderly woman.

"I came back to work and my old people were walking faster than I was," Thomas said.

On death's door

At her recent follow-up visit at Mayo Clinic, Dr. William Sanchez referred to Thomas as "his miracle."

"Dr. Sanchez said I was on death's door," Thomas said.

She is now on just one antirejection medication that Thomas must take for the rest of her life. Unfortunately, the side effects of the drug include a high risk for cervical cancer, lymphoma, skin cancer and kidney failure.

Thomas continues to have blood work done every other week in Dickinson, is drinking lots of fluids to help her kidneys and is walking.

Some of the restrictions Thomas is on includes all of her meat must be well done, all eggs must be thoroughly cooked and she must be careful with fresh vegetables that may carry bacteria.

A Williston friend, Chantel Neubauer, placed buckets at Williston gas stations to help raise funds to offset Thomas' medical expenses. A Heather Thomas Benefit Fund also exists at Williston's First National Bank. A Heather Thomas Fund also is at Gate City Bank in Dickinson.

Thomas is likely never going to know how she contracted the disease, as it doesn't run in the family. But looking ahead to spending a very special Thanksgiving with her family on Thursday, Thomas said, "It's going to be a good one."