Organ donation saves lives

By ANNA LAMY | Hernando Today

In Florida there are more than 4,000 people waiting for an organ donation and more than 110,000 nationwide.

Hernando County resident Steve Davey awaits a liver transplant, his only option for survival.

Davey, 60, has lived in the community for more than 30 years. He has worked as a teacher and volleyball coach for Springstead High School, West Hernando Christian and Hernando Christian Academy. He is also an ordained minister.

Davey was diagnosed with primary sclerosing cholangitis (PSC) a liver disease which causes chronic and long-term damage to the bile ducts inside and outside the liver, with no definitive cause or cure.

The most needed organs for donation are kidney, pancreas, heart, and/or liver. Thousands wait for tissue transplants.

Dr. Surakit Pungpapong, M.D., a transplant hepatologist and associate professor of medicine at the Mayo Clinic in Jacksonville said there is an organ shortage in the U.S., by about 6,000 per year.

"There are far more waiting for donation, than there are donors as this point," Dr. Pungpapong said.

Davey feels his condition is possibly related to an immune system reaction to an infection or toxin in people with a pre-disposition to develop the disease, and it is not clear how these conditions are linked and whether they share similar causes.

The term "cholangitis" in PSC refers to inflammation of the bile ducts, while the term "sclerosing" describes the hardening and scarring of the bile ducts that result from chronic inflammation.

"PSC is a progressive disease that leads to liver damage and, eventually, liver failure," Pungpapong said. "Liver transplant is the only known 'cure' for PSC, but transplant is typically reserved for people with severe liver damage."

April is national Donate Life month, established in 2003 to bring awareness for the need of organ donation. Other organs that can be harvested for donation are lungs, intestines, bone, heart valves and corneas.

Davey is going through the Mayo Clinic in Jacksonville for a liver transplant. His choice resulted from his research, as the Mayo Clinic in Jacksonville performs these procedures most often for this region.

According to the Mayo Clinic in Jacksonville, they have one of the leading liver transplant programs in the country, which is based on the volumes of transplants performed, 2,181 liver transplants in adults age 15 years and older since its inception in 1998.

"In the past, organ donations were processed as a first come first serve basis," said Dr. Pungpapong, "Now, there is a process to determine need based on the patient's medical condition and progression of the disease."

The most common measurement tool used is the MELD scale, which based on factors of the patient's condition determines their rank on the list, the higher a patient's score is on the scale equals a higher need or urgency for a transplant.

"The score is used to prioritize the patients with the most need," said Dr. Pungpapong.

LifeLink Foundation, Inc. serves as one of the four organ procurement organizations (OPO) for the state of Florida, with offices in Tampa, Norcross, Georgia and Puerto Rico.

"The country is divided into regions to keep organs within proximity to the patients needing the organ," Dr. Pungpapong expalined. "Organs are transferred in a solution and are only viable for a certain period of time. For example, a liver needs to be transplanted within eight hours of procurement."

Organs are not transferred from California to Florida for a patient, this is based on time and we want to keep healthy organs for transplant close in the region, he added.

It is estimated that one person who chooses to be an organ donor can potentially help more than 60 people, according to LifeLink Foundation Inc.

According to the Department of Health and Human Services (HHS), organ donations are first matched by blood type, body size, severity of patient's medical condition, distance between the donor's hospital and the patient's hospital, the patient's waiting time, and the availability of the potential recipient.

"OPOs vary from region to region," Dr. Pungpapong said. "Each region varies in wait times based on need and availability of organs, as the more populated, the higher the waitlist."

An example of a good chance of the transplant occurring is if the patient can be contacted and has no current infection or other temporary reason that transplant cannot take place.

According to the Division of Transplantation (DoT), on average someone is added to the organ donation waiting list every 11 minutes and about 75 people a day receive organ transplants. However, an average 20 people die waiting for an organ donor.

The Division of Transplantation (DoT) serves under the U.S. Department of Health and Human Services, Health Resources and Services Administration's Healthcare Systems Bureau. DoT serves as the primary, responsible federal entity overseeing the organ and blood stem cell transplant systems in the U.S. and promotes initiatives to increase organ donation.

Researchers continue looking for treatments to slow or reverse bile duct damage caused by PSC. But until a treatment is found, doctors care for people with PSC by reducing signs and symptoms of complications.

Fortunately for Davey, the Mayo Clinic offers shorter wait times for adult livers in about 1.3 months compared to the national average of 10.8 months. They also exceed the national average for patient survival.

For the liver transplant, the new liver is attached directly to the small intestine eliminating the common bile duct, but is not guaranteed that the PSC will not reoccur.

Risk factors

PSC is not reportedly caused by any specific one factor, but its most commonly diagnosed in people ages 25 to 45 and occurs more often in men than it does in women.

The great majority of people with PSC also have inflammatory bowel disease or syndrome (IBS), and can include ulcerative colitis and Crohn's disease.

It is important to note that PSC is rare among people with inflammatory bowel disease, and most won't develop the disease.

It's not clear why these diseases occur together. If you've been diagnosed with PSC, your doctor may recommend testing for inflammatory bowel disease, even if you have no signs or symptoms

Liver transplant is the only option for patients with this diagnosis, but there is not guarantee that patient will not have a reoccurrence.

Treatments

PSC affects people differently, as the symptoms vary in severity, as well as treatments.

Often times bile duct blockages occur. Bile ducts can be treated by balloon dilation and stent placement.

These procedures can open blockages in the larger bile ducts. Balloon dilation is a procedure in which your doctor runs a slender tube with an inflatable balloon at its tip (balloon catheter) through an endoscope and into a blocked bile duct.

Once the balloon catheter is in place, the balloon is inflated. Small plastic tubes called stents also may be placed in bile ducts to keep them open.

At this point, Davey's body is poisoning itself, as the bile ducts are not able to remove the toxins in his liver.

"I have to undergo stent procedures, much like a heart catheter, to open the main duct to allow the toxins to flow out," he said.

Stent is a temporary solution, so is ballooning. Stents have to be removed within 60 days to avoid infection.

"Eventually, these procedures will no longer be performed as scar tissue builds in the area preventing future procedures," Davey added.

Davey can feel when his body is toxic; he develops liver pain and is easily confused at times. He also has issues swallowing as the blood vessels in his neck close.

"The liver has a main bile duct and several branches, like a tree," Davey describes, "These slowly will shut down and the liver will no longer function."

I am on constant antibiotics for the inflammation of the liver, added Davey.

"There is a limit as to how long I can remain on the antibiotics before they no longer are effective."

Most liver transplant operations use livers from deceased donors, though a liver may also come from a living donor.

The number of people waiting for new livers is much larger than the number of available livers, so liver transplant is reserved for people who are critically ill.

Some people will receive a liver right away, while others spend many months waiting for a liver transplant.

Davey has a specific condition for the type of liver he can receive. He needs a cytomegalovirus (CMV) negative. CMV is a virus that the body develops antibodies for and stays with the person for the rest of their life.

CMV is a common virus that infects people at any age, most commonly in infants and is 'silent,' with no signs or symptoms. However, this virus can cause disease in people with weakened immune systems and babies, if infected before birth.

PSC tests

Most commonly, a liver function blood test is done to determine a patient's liver function, which includes liver enzyme levels, providing a doctor with clues.

X-rays of the bile ducts with an injected dye, allows for a visible view of the function in the liver on an X-ray. To inject the dye, an endoscopic retrograde cholangiopancrea-tography, where a flexible tube is guided down the throat, through the stomach to the small intestine where the bile ducts empty, injecting the dye into the bile ducts.

The magnetic resonance cholangiopancreatography uses a magnetic resonance imaging (MRI) to take images of the liver and bile ducts.

A liver biopsy is a procedure where a piece of liver tissue is taken for lab testing and can help determine the extent of liver damage.

The family needs to fund raise due to the high out of pocket expense for the procedure and subsequent treatments for the liver transplant.

On Saturday, April 2 a Rummage Sale is being held from 8 a.m. to 4 p.m. at the Springstead High School Cafeteria, 3300 Mariner Boulevard in Spring Hill the proceeds from the sale will be held in an account by the NTAF (National Transplant Assistance Fund) Southeast Liver Transplant Fund in honor of Steve Davey, also contributions can be made at or call 800-642-8399.