Saturday, August 21, 2010

Did you know...

That in some circumstances, your next of kin can go against your wishes to donate your organs when you die? This is why it is very important to tell your loved ones about your decision to be an Organ Donor. (Besides the fact that you are spreading the word, potentially saving even more lives!)

By donating your organs after you die, you can save or improve as many as 50 lives. And many families say that knowing their loved one helped save other lives helped them cope with their loss.

Spread the word! Live Life then Give Life!!

Wednesday, August 18, 2010

Newly Recognized Factor in Mother-to-Child Transmission of Hepatitis C

In general, the children of women infected with Hepatitis C have a low risk of being born with the virus. In addition to what was previously known about this type of Hepatitis C transmission, new research finds a genetic link that can aid - or prevent - this from occurring.

by Nicole Cutler, L.Ac.

Many women with a chronic viral infection are weary of procreating, because of the chance they may pass their illness on during pregnancy or birth. For those infected with Hepatitis C, this fear is especially pronounced.

There are a handful of reasonable causes supporting a fear of carrying a baby and giving birth with Hepatitis C. They include:
· Hepatitis C is rampant in our society - affecting approximately four million Americans.
· Hepatitis C often leads to chronic liver disease.
· There is currently no guaranteed cure for Hepatitis C.
· Nearly half of those with Hepatitis C are unsure as to how they originally became infected.

Known as vertical transmission, the risk of infants acquiring Hepatitis C from their mother during pregnancy or childbirth is surprisingly low. There have been quite a few studies examining what the likelihood is of vertical transmission and what increases or decreases the risk of infecting a newborn with Hepatitis C.

Although the statistics determining the rate of vertical transmission is not uniform among these studies, experts believe the most accurate estimate of vertical transmission from mothers with Hepatitis C is five percent. Based upon a comprehensive review of trials investigating Hepatitis C vertical transmission, the following appear to represent the two largest risks for bearing a child with Hepatitis C:
1. The mother is co-infected with Hepatitis C and HIV.
2. The mother has a high Hepatitis C viral load during birth.

In addition, physicians typically relay the following information to pregnant women with Hepatitis C:
· The presence of Hepatitis C infection does not appear to result in a higher risk pregnancy or a higher incidence of poor obstetric outcome.
· Testing for the presence of Hepatitis C in infants born to infected mothers should not begin until at least one year following delivery. The natural history of Hepatitis C infected infants is poorly understood at this time.
· Prophylactic caesarian section is not recommended in Hepatitis C infected mothers. The role of cesarean delivery in mothers co-infected with Hepatitis C and HIV remains controversial.
· Breastfeeding presents a negligible risk of Hepatitis C transmission. Given the well-documented benefits of breastfeeding, it is highly recommended.

It has been a while since there were any additional factors recognized to affect the likelihood of vertical transmission. However, researchers from Italy have recently identified a genetic component that reliably foretells this possibility.

As published in the July 2009 edition of the journal Virology, a mismatch between genes carried by a mother and her infant appear to confer protection against Hepatitis C transmission. Elena Bevilacqua and colleagues from Italy investigated the role of several genes known to play a role in Hepatitis C infection. These researchers found that a specific gene, HLA-DRB1, could predict whether or not the infant acquires Hepatitis C infection from its mother. Based on this research:
1. When a mother and child have the same genetic variant of HLA-DRB1, there is no guarantee that vertical transmission will occur; it just increases the likelihood.
2. When a mother and child have different variations of HLA-DRB1, there appears to be guaranteed protection from vertical transmission.

Unfortunately, a mother cannot control the similarity or dissimilarity of her infant's genetic construction. However, whenever a trial reveals a definitive link for Hepatitis C transmission, we gain some ground in understanding this virus. Undoubtedly, the more information gathered on how Hepatitis C is transmitted, infects people, replicates and dies, the closer we are - as a whole - to putting an end to this source of chronic liver disease.

Article by

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Monday, August 16, 2010

What Is Primary Biliary Cirrhosis (PBC)?

Thank you Craig... I always know where to go to find good information. I met a man today (who is doing GREAT post-transplant) that needed a new liver due to PBC, which of course I had to find out more information about as soon as possible... so here it is!

Primary Biliary Cirrhosis (PBC) is a chronic liver disease that slowly destroys the bile ducts within the liver (intrahepatic bile ducts). Liver inflammation over a period of years may cause scarring which leads to cirrhosis. PBC is NOT alcohol or drug related, and it is NOT contagious.

The name "Primary Biliary Cirrhosis" is somewhat deceiving since cirrhosis only occurs in the last stage of the disease (stage 4) after many years of inflammation. With early diagnosis and proper medications, most with PBC will never reach the cirrhosis stage of PBC.

PBC is also called "Chronic Nonsuppurative Destructive Cholangitis" and "Primary Autoimmune Cholangitis." However, these alternative terms are not widely accepted and therefore not in use.

Definition from New American Medical Dictionary:

Primary: First in order of development, most important, arising spontaneously.
Biliary: Relating to or affecting the bile duct system or bile.
Cirrhosis: An inflammatory disease of the liver associated with the replacement of liver cells by fibrous tissue. Passage of blood through the liver may eventually be obstructed by the cirrhosis.
The cause of PBC is still unknown, but it is not alcohol or drug induced. Current studies suggest it may involve autoimmunity, infection, or genetic predisposition, and does seem to appear more often in certain families. Women are affected 10 times more than men, and PBC is usually diagnosed in patients between the ages of 35 to 60 years.

Those with PBC usually look extremely healthy, and many are 10 to 30 pounds overweight. The slight bronze pigmentation of the skin is often present in the advanced stage of the disease, and makes the individual look tanned. The outward appearances doesn't tell the story of what is going on inside their bodies. Even on the transplant list stage, many with PBC look healthy. A person with PBC commonly hears comments such as "you look so healthy or you don't look sick."

Upon diagnosis, some doctors may suggest their patient start:

Start a reduced sodium diet and or low fat diet. Nutrition
In severely damaged livers, proteins may be restricted.
Drink plenty of water and other fluids such as juice.
Calcuim and Vitamin D. Calcium is the most common mineral in the body and is required for proper functioning of most organs. It is particularly needed in the normal development of the bones and teeth. Osteoporosis is a bone disease where calcium leaves the bones, causing them to weaken, and is commonly associated with PBC.
Avoid or lower intake of alcohol
Lower caffeine intake
Avoid undue stress
Exercise, if possible. Walking is the most common recommendation for exercise.
Stop smoking
The above suggestions have been found to be very helpful in liver disease, but are common sense considered part of healthy living. PBC Menus and meal plans by Norma J. Thiel, RD, Clinical Nutrition Manager Mountainview Hospital.

The number of patients being diagnosed at the asymptomatic stage has risen dramatically over the past few years due to widespread laboratory screening. Typically, the blood lab pattern reveals an elevated alkaline phosphatase level with a normal bilirubin. Bilirubin does not increase until final disease stage. There are four disease stages of PBC.

Medical tests used to confirm PBC:

A liver biopsy helps confirms the diagnosis, but is not a requirement.
Ultrasound exam may be performed to visualize the bile ducts to exclude an obstruction.
Blood lab tests that show liver dysfunction:
Liver function tests
Antimitochondrial antibodies. Positive AMA is found in about 95% of PBC patients.
Serum cholesterol and lipoproteins may be increased.
Haptoglobin & ACE levels may be altered
Diagnostic tests
PBC advances slowly over a period of years. Most patients lead normal lives for years without symptoms, depending on how early diagnosis is made. There is no cure for PBC, but patients are showing good results in slowing the disease progress with URSO 250 , Actigall and methotrexate. With the current medications, it is becoming more common for the PBC patient to live a long life without any complications from PBC, and in some cases actually lowering the disease stage from original diagnosis stage.

PBC is considered an autoimmune disease. Some diagnosed with PBC, may also be diagnosed with one or more other autoimmune diseases. Click for diseases and conditions associated with PBC.

Most patients remain without symptoms for many years, and some may never notice any symptoms. The initial symptoms vary among PBC patients, and the varying symptoms can sometimes make it difficult for doctors to actually diagnose PBC. The varying symptoms may be do to the individual, autoimmune nature or other diseases associated with PBC. Symptoms may be present in any combination and include any of the following:

Fatigue may be the first symptom the patient notices, causing him or her to visit their doctor. The fatigue associated with PBC appears to be totally different from any other sort of fatigue. In early stages, many patients have commented they could sleep for hours. While some in the later stages say sleeping becomes more difficult. At this time, there is little research into the cause and treatment of the liver disease fatigue. It is usually not due to depression, and some researchers believe it is an abnormality of the axis between the pituitary and the adrenal glands. Support and understanding from family members, friends and the doctor is very important, making it somewhat bearable.
Intense and unrelenting itching of the skin.
Gradual darkening (hyperpigmentation) or changes in skin texture, and various skin rashes.
Small yellow or white bumps (xanthomas) under the skin, or around the eyes.
Dry Eye Syndrome
Dry mouth, sometimes referred to as cotton mouth.
Thyroid problems

Arthritic aches and pains in bones, muscles and joints are common. In some, the pains can be severe and debilitating. Some even report severe pain just touching leg, feet and hip bones, but this is NOT common.

Over the years, as the PBC progresses, other symptoms may appear. These symptoms may include any of the following:

Osteoporosis or other metabolic bone disease. See osteoporosis exercises.
Enlarged abdomen from fluid accumulation.

Easy bruising or bleeding

Jaundice (yellowing of the skin and eyes)

Increased bilirubin

Internal bleeding in upper stomach and esophagus, that may be caused by varcies.

Hepatic encephalopathy causing personality changes: dulling of mental functions, neglect of personal appearance, forgetfulness and trouble concentrating, changes in sleeping habits, confusion, breath odor and muscle stiffness. Encephalopathy occurs in final stage of PBC.
Hypersplenism, enlarged spleen
Fever, nausea and vomiting
Reflux and stomach ulcers
Weight increase or decrease
Swelling of the hands, legs and ankles. See edema and ascites
Sexual problems (impotence in men, absence of periods in women, lack of desire.)
Trembling hands
Difficulty in sleeping and changes in sleeping habits. Some PBC patients have noted that itching intensifies when they lay down to sleep, and those who have liver pain say it is more severe in a sleeping position.
Hepatorenal syndrome, progressive deterioration of kidney function leading to kidney failure in a person with liver failure.
Hepatopulmonary syndrome, associated with difficulty with breathing.
Liver cancer (hepatocellular carcinoma)
Abdominal pain or pressure in the liver area. (Yes it's real)
As the PBC progresses, some patients require vitamin A, vitamin D, vitamin E and vitamin K replacement therapy to add back fat-soluble vitamins which are lost in fatty stools. A calcium supplement may be prescribed to help prevent osteomalacia and osteoporosis.

When medical treatments, such as URSO 250 & URSO Forte, Actigall and methotrexate, no longer control the disease, the patient should be evaluated for a liver transplant. The end stage of PBC is liver failure. Many signs indicate liver failure: increased bilirubin, jaundice, fluid accumulation or ascites, malnutrition, gastrointestinal bleeding, intractable itching, bone fractures and hepatic coma. Transplant is recommended before most of these symptoms occur. Recent studies suggest that about 30% of those diagnosed with PBC will require a transplant. The transplant outcome for PBC patients is excellent.

As with any other chronic illness, support and understanding is very important in helping the PBC patient cope with day to day living.
Author: CNL Created: 4/25/2010  Ref #:46546
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Friday, August 13, 2010

Teen's death meant gift of life

Beautiful story of true angels... I have never seen anyone who regretted this decision. It is the most selfless, heroic act, and I for one wouldn't be alive today if it wasn't for my organ donor! 

SAN DIEGO, Calif. -- 

Ted McCrow vowed he would never return to San Diego.
After his 17-year-old son, Sam, had a brain aneurysm while surfing at Mission Beach three years ago, McCrow of Vancouver, Wash., could not imagine ever coming back to the place where his family vacation turned so swiftly to tragedy. McCrow and his wife, Jasmine, were equally haunted by the hours that followed when Sam was declared brain-dead and they had to put into action Sam's long-standing wish to donate his organs.
Ted McCrow remained unswayed about his decision never to step foot in San Diego again, even when Jasmine returned here briefly last fall to meet one of the donor recipients. Only after seeing how cathartic the meeting was for his wife did Ted McCrow begin to consider the impossible.
On the third anniversary of their son's death, the McCrows did revisit the beach where their teenager collapsed. And tearfully, with daughters Kristen and Kaisa, they began a series of reunions with the four people who are alive today because of Sam.
One of the two donor recipients they met Friday was Xavier McLeod, a 6-year-old Lemon Grove boy who is now the healthy owner of one of Sam's kidneys.
"I will never get over the death of my son," Ted McCrow said haltingly, gripping a cup of water and occasionally leaning toward his wife, putting a hand on her shoulder. "But I love seeing him (Xavier) so healthy. I can't wait to hear about Xavier growing up."
Xavier instinctively went to Kristen's lap, where he sat for nearly the entire reunion that took place in the Mission Valley offices of Lifesharing, a division of UCSD Medical Center that provides organ recovery, donor family support and educational services.
Xavier was born with a kidney defect that required him to be on dialysis 10 hours a day, be fed through a machine and receive numerous injections. He had been on the organ waiting list his whole life.
On Friday, the McCrows also met Sandy Hintz, who received Sam's pancreas and his other kidney. When Hintz entered Lifesharing's conference room to meet the McCrows for the first time, she silently fell into hugs with them that lasted more than a minute.
The first thing Hintz said when she came up for air was, "Thank you for what you did."
Then out came the photographs. The McCrows showed a framed picture of Sam, his smile broad, his hair tousled. Hintz showed pictures of her 11 grandchildren.
Hintz, a local nurse who works with children, was an insulin-dependent diabetic for 30 years. She was in kidney failure and had been on three donor waiting lists around the country for more than two years when she got the midnight call on Aug. 6, 2007, to head to Scripps Green Hospital in La Jolla. By 6 o'clock the next morning, she was in surgery.
While recovering, not knowing their names or where they lived, Hintz wrote to the McCrows to express her gratitude. She sent the letter through Lifesharing.
"I have been recovering over the last month and doing well," Hintz wrote. "Both organs are functioning very well and I am insulin free with normal blood glucose for the first time in my life.
"I am grateful and honored to have been offered and given these organs of your beloved family member. Thank you for the gift of life. I will take great care of them."
During the reunion, Norm Lydiard of Phoenix, the recipient of both of Sam's lungs, called in to say how much he was looking forward to meeting the McCrows.
"It's almost criminal how well I'm doing," Lydiard said from Arizona.
The recipient of Sam's liver, Edgar Cachuela of Orange County, also planned to join the gathering.
For a long time, the McCrows did not respond to the "thank you" letters Lifesharing gave them from the recipients, and they declined invitations to come to San Diego for a reunion. Slowly, Jasmine McCrow warmed to the idea.
She talked with Valerie James, Xavier's mother, by phone on the anniversary of Sam's death, and she met James and Xavier in November at a nursing symposium here.
Seeing his wife handle these interactions helped Ted McCrow accept the invitation to bring his family to San Diego to mark his son's death.
"There is something very powerful about anniversaries," said Sharon Ross, community outreach manager for Lifesharing. "The first year, there is so much grief and anger.
"As time goes by you never forget, but that grief changes. Ted specifically came down here for the third anniversary to say his goodbyes and his hellos. After he met Xavier, he said, I'm open now to meeting the other recipients. "
One of the memories Ted McCrow keeps with him is the last day of his son's life and how much he loved San Diego and its surfing.
"As we were heading out to the beach that morning, he said to me, 'If I was to have to ever go, this is where I'd want to go,' " said Ted McCrow, recalling his son's words.
Sam's ashes have been spread here, in Guam and along the Oregon Coast.
"Maybe he is around here more than other parts of the country," said Jasmine McCrow. "I really feel like he is part of the universe. His love is always with us."
Information from: The San Diego Union-Tribune,
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Sunday, August 8, 2010

Did you know...

Living donor liver transplantation has two major advantages over deceased-donor transplantation. First, there is an improved survival rate for the adult transplant recipients who received living-donor livers over deceased-donor livers. Please see charts below. Secondly, the wait for transplantation can be greatly reduced.
One Year Liver Transplant Survival Rate (1/1/06 – 12/31/09)

Recipient Survival with Deceased-Donor liver – 86.5%
Recipient Survival with Living-Donor liver - 96.1%
Three Year Liver Transplant Survival Rate (7/1/04 – 12/31/06)

Patient Survival with Deceased-Donor liver - 73.3%
Patient Survival with Living-Donor liver - 91.6%

Spread the word! Live Life then Give Life!!

Saturday, August 7, 2010

7,000,000 Californian HEROES!

Whoo Hoo CALIFORNIA!!! Let's make it 8,000,000 now!! Live Life then Give Life. I AM one of these 7,000,000, are you?

Gov. Schwarzenegger Issues Statement on Donate Life’s California Donor Registry Reaching Seven Million Donors

Governor Arnold Schwarzenegger today issued the following statement after Donate Life announced that its Donate Life California Donor Registry hit seven million donors:
“Being a donor is one of the most selfless and courageous things a human can do, and I am thrilled to know that seven million Californians have signed up to help save lives. However, there are thousands waiting in hope of a transplant and we must continue to work to increase the number of donors, and that’s exactly what SB 1395 will do. This legislation, which I announced earlier this year, will make it easier for Californians to affirm their preferred organ donor status, thereby helping increase the number of donors. I look forward to the legislature sending this bill to my desk so I can sign it into law.”
On March 19, Governor Schwarzenegger and Senator Elaine Alquist (D-Santa Clara) announced the introduction of SB 1395. The legislation would give Californians a choice between registering to be an organ donor or considering at another time via a mandated question through the Department of Motor Vehicles driver license application/renewal or state ID card application process. The legislation would also create the nation’s first living donor registry for kidney transplants to better connect those who want to donate with those in need of a transplant.

Tuesday, August 3, 2010

Smoking - Your Liver and Your Bones

I had to share this... Many of my family members are still smokers, including some that have liver disease, after all that I have said. The NERVE... just kidding guys (about being angry, not about the following article, that's true) So please, remember how hard our bodies work for us, and how fragile life can be.

HCV New Drugs: Smoking - Your Liver and Your Bones: "Hello Folks,Because I'm such a liver lover a year ago I stopped smoking. Yes I gained weight, and yes I considered rehab and no I didn't tea..."