Jerry Howerton, 61, husband, father and grandfather, is suffering from end-stage liver disease caused by hepatitis C and cirrhosis. He has an appointment in mid-April in Phoenix for an update on his original evaluation and testing in hopes of getting his name on the donor list.
Hepatitis C, a liver disease, is caused by the hepatitis C virus (HCV). Most people who are infected with hepatitis C don't have any symptoms for years. There is no vaccine for HCV and serious cases may require a liver transplant.
Cirrhosis is a slowly progressing disease in which healthy liver tissue is replaced with scar tissue, eventually preventing the liver from functioning properly. The scar tissue blocks the flow of blood through the liver and slows the processing of nutrients, hormones, drugs and naturally produced toxins. It slows the production of proteins and other substances made by the liver.
Hepatitis C, fatty liver and alcohol abuse are the most common causes of cirrhosis of the liver in the U.S.
"I'm not positive how I got it, but I did an experimental drug thing while we were divorced for a couple of years. I drank a lot, so that probably contributed to the cirrhosis, and I got a tattoo during that time," Jerry said.
It was in the '70s, Jerry said, and he hopes by telling his story it might help even one person realize howthey could get the disease.
"There's no way to pinpoint exactly what caused it," said his wife, Mary.
April has been designated National Donate Life Month highlighting the need of 106,000 men, women and children in need of life-saving organ transplants in the U.S. Approximately 18 people die each day in the U.S. awaiting an organ transplant.
One organ donor can help save the lives of up to nine people through the donation of organs including the heart, liver, kidneys, lungs, pancreas and intestines. One tissue and eye donor can help more than 50 people through the donation of tissues, resulting in cornea, bone, tendon, skin, and vein and heart valve transplants.
"I started getting this pain in my stomach and back. About eight years ago I didn't have any symptoms. Sometimes it doesn't show up for 25 to 30 years," Jerry said.
The job he had been working at for years had become too strenuous for him. When he went to get a physical exam eight years ago, his liver enzymes were elevated, indicating possible hepatitis C. Another test confirmed the diagnosis.
He started seeing a doctor in Roswell and took two six-month stints of interferon treatments. Both times, the disease came back. The doctor then told him there wasn't any other treatment available at the time.
"The treatments weren't any fun. They are a form of chemotherapy," he said. "I was still working, but I did change jobs to do something easier and not so physical."
He bounced back for a time, but then began to tire easily again. He attributed that to his age. Then he began to have pain. Advil helped at first but then it didn't ease the pain. His stomach had become swollen and tight.
"They drained my stomach, which is real common with this hepatitis," Jerry said, noting the draining procedure is called tapping and is done in the hospital.
He got a little energy back and returned to work, but in a month his energy level was at a low point. Currently, he sees two doctors locally and one in Albuquerque. He was put on diuretics for a year but the drug affected his kidneys.
"They had to take him off the diuretics," Mary said. "Any time you go through something like this with one organ, it affects other organs in the body. So he has to have tapping done every three weeks."
"They got eight liters last time," he said, adding at times his stomach protrudes so far he looks and feels like he's pregnant.
Mary explained he has to take medicine to keep his bowels moving so ammonia doesn't build up on his brain accompanied by a high fever. Ammonia levels in the blood rise when the liver is not able to convert ammonia to urea, and this may be caused by cirrhosis or severe hepatitis. If the ammonia isn't kept down his brain will swell and he will literally lose brain cells.
"One thing is you start getting really confused when the ammonia is up, but we have that under control," Jerry said.
"I hardly have an appetite and I eat very little," he added, noting he lost 25 pounds and a lot of muscle tone.
"I get up and walk around and then get a little woozy. You have to be in the best possible shape to get a transplant so I'm trying, but if you don't have an appetite and no energy there's not a lot you can do," he said.
"Psychologically, it gets really depressing," Mary said, noting they will be in Phoenix for a couple of days and once he's on the transplant list, the wait begins.
"They do random blood tests to make sure you're not taking drugs or drinking," she added, noting they are not going to waste a donated liver.
Son Jason lives in Roswell and daughter Shannon Reynolds lives in McKinney, Texas. Both help out when and where they can. Mary stopped working a month ago to stay at home and care for him and keep track of his medicine.
"Our son Jason goes with us to each one of these appointments," she said. "He (Jerry) calls him our six-foot angel. As we get older we realize how important they both are to us."
"We also have a really good church we go to, New Song, and we have an awesome support system," Mary said.
Where a person is placed on the donor list has something to do with the individual's MELD (Model for End-Stage Liver Disease) number. The number is derived from a scoring system assessing the severity of chronic liver disease. MELD uses the patient's values for serum bilirubin, serum creatinine and the interna-tional normalized ratio for prothombin time to predict survival.
"The higher the number the better the shot," Jerry said. "They make the best possible match available.
"You have to have the same blood type as the donor and when they call, you have to be there within hours. If something is wrong with the harvested liver, you just go back home and wait."
Questions about organ donation
Q. Will registering to be a donor interfere with my medical care?
A. No, Registering to be a donor will not interfere with any medical care provided. Donation is considered after all life-saving efforts have been made and death is imminent.
Q. Can I specify the organs I want to donate?
A. Yes. The online donor registry allows you to specify the organs or tissue you do not wish to donate, as well as the uses of your donation.
Q. Can I donate even if I'm older or have medical issues?
A. Yes. A medical evaluation, not age, determines donation at the time of death. The oldest organ donor was 93 years old. Individuals with medical issues, such as diabetes, hepatitis, high blood pressure, cancer and other diseases are able to donate.
Q. Do families have to pay for the donation?
A. No. There is never any cost to the donor family or estate for the gift of donation.
Q. Can there be a funeral or viewing?
A. Yes. Donation does not change the appearance of the body and it's possible to have a viewing, open casket funeral, or cremation.
Q. Do religions support donation?
A. Yes. All major religions in the U.S. support donation as an unselfish act of charity that will save or improve someone's life.
Q. Can my family overrule my decision to be a donor?
A. No. New Mexico law supports an individual's decision to be a donor made on their driver's license or ID card or on the online donor registry.
For more information about organ tissue and eye donation, visit www.NMdonor.org or call 505-843-7672 for a free brochure.