Friday, April 30, 2010

Strong mommas, brave girls, and their stories

Stories like this following ones... families like this, amaze me everyday with their strength and courage to not only to survive, but to keep on LIVING!!

Gabriella and her sparkly new heart
Our Transplant Journey
Anna's Journey to a new liver.

Spread the word! Live Life then Give Life!!

Thursday, April 29, 2010

Living With Toxins

Besides the obvious drug and alcohol use, there are many things that cause liver damage. You don't even have to be overweight to have a fatty liver (Donuts, deep-fried fast food, and soda are three of the worst foods for your liver. And yes, chicken McNuggets are deep fried.) Taking Tylenol for 14 consecutive days can cause liver damage... And don't forget, most countries have already banned the main ingredient in Anti-bacterial hand soap because of the damage that it can do, especially to the liver!!!

Thanks Craig :) The following article really reminds us how many toxins are out there.
Living With Liver Disease

While large quantities of environmental toxins used to be implicated in liver damage, new research claims that even small amounts of chemicals are sufficient to cause liver problems.
Due to increased awareness and activism, today’s growing eco-conscious movement is steadily chipping away at the poisonous chemicals that surround us. Unfortunately, environmental toxins can still be found everywhere. Whether found in our food supply, building materials, health devices or agricultural products, toxins are known to cause damage to the liver.
Many people mistakenly assume that only high levels of toxic chemical exposure is dangerous. However, low toxin levels do not equate with safety. For a liver that is already battling ongoing disease, any amount of toxins strains the body’s detoxification system. In addition, researchers from Kentucky have recently discovered that even low levels of environmental toxins appear to play a role in creating liver disease.
Over the past year, clinicians have estimated that approximately one in every four American adults has fatty liver disease. However, fatty liver disease is just one of many kinds of chronic liver disease. To investigate liver disease’s rapid growth in the American population, Matthew Cave, MD, assistant professor of medicine at the University of Louisville, extracted data from the 2003-2004 National Health and Nutrition Examination survey (a database often used by researchers). By looking at abnormal levels of a liver enzyme associated with liver injury, Cave’s research revealed just how common liver problems are. After excluding people with traditional risk factors for liver disease, such as hepatitis and alcoholism, these Kentucky researchers concluded that more than one in three adults in the U.S. have some form of liver disease.
According to Cave, many instances of liver disease are linked with environmental pollutants, such as pesticides and heavy metals. The survey participants’ blood and urine were evaluated for about 200 common pollutants. Among the chemicals studied, were:
Lead – A highly toxic metal found in small amounts in the earth’s crust, lead is abundant. Lead and lead compounds have been used in a wide variety of products including paint, ceramics, pipes, solders, gasoline, batteries and cosmetics. Since 1980, government standards have reduced the amount of lead allowed in consumer products and occupational settings. Today, the most common sources of lead exposure in the United States are lead-based paint in older homes, contaminated soil, household dust, drinking water, lead crystal and lead-glazed pottery.
· Mercury – Also an element in the earth’s crust, mercury cannot be created or destroyed by humans. Despite its toxicity, mercury is found in many industries, such as battery, thermometer and barometer manufacturing, fungicides, and before 1990 as an anti-mildew agent in paint. In 1999, the public was alerted that thimerosal, a mercury-containing preservative used in some vaccines, could be related to certain diseases. Today, mercury exposure is mostly associated with eating fish contaminated with mercury and dental amalgams, or fillings, by dentists.
· Organochlorine Pesticides – Organochlorine pesticides have been banned from use in the U.S. since the 1980s, but they can linger in the environment. Exposure to organochlorines can still occur when people eat fatty foods, such as fish, or dairy products contaminated with these long-lasting pesticides.
Alanine aminotransferases (ALT) is a liver enzyme that is released when the liver is injured. Upon evaluating the participant’s ALT levels, Cave found that 34.1 percent had abnormal levels. Additionally, their findings demonstrated that the more lead, mercury and organochlorine pesticides found in a person’s blood or urine, the greater risk of abnormal ALT.
Even after adjusting for obesity, race, sex, poverty and diabetes, the researchers reported, “…the results indicate that there may be a previously unexpected role for environmental pollution in the rising incidence of liver disease in the U.S. population.” According to Gina Solomon, MD, MPH, a senior scientist at the Natural Resources Defense Council in San Francisco, “The thing that is so dramatic about this study is they found associations at the levels that are in the general population. There’s no surprise that these chemicals can cause liver disease, but previous research has always suggested that the doses needed to be much higher.”
In light of this realization, people can protect themselves by reducing or minimizing exposure to substances known to contain toxic chemicals. Unfortunately, there is no way to isolate oneself from all of the possible contaminants in the environment. Thus, another strategy to reduce the impact of environmental toxins is to shield the liver from toxins. Advised by a growing number of health professionals, milk thistle supplementation is ideal for this purpose, because this herb strengthens liver cell walls, thus reducing its vulnerability to toxins.
According to this new research, those who scrape lead paint for a living are not the only ones who need be concerned with their liver’s health. Apparently, just living on this planet is sufficient to cause liver damage in one of every three people. Researchers are actively seeking to understand why so many develop chronic liver disease. Until then, minimizing toxin exposure and fortifying the liver are the best-known ways to deflect the damage (and illnesses) incurred from environmental toxins.
References:, Toxicity, Mercury, Barry M. Diner, MD, Retrieved June 4, 2009, Medscape, 2009., Environmental Toxins, Retrieved June 2, 2009, Emerson Health and Wellness Centre, 2009., Lead, Retrieved June 4, 2009, National Institute of Environmental Health Sciences, 2009., Environmental Toxins & Liver Disease: A Link?, Kathleen Doheny, Retrieved June 1, 2009, WebMD, LLC, May 2009., Environmental Toxins, Retrieved June 3, 2009, The Weston A. Price Foundation, 2009.

Wednesday, April 28, 2010

Wow guys... I'm feeling the love!!

 YES!! It makes me so happy to see others taking care of their livers!! I've been getting some encouragement to keep on spreading my message about what I've learned on Liver Health (29 years of problems is where I get my "Dear Abby" advice) and Organ Donation Awareness (being that Larry will soon be leaving)
Livers can take a lot of abuse... but I have Hep C and high iron levels so damage started in childhood. There are MANY different reasons cirrhosis can begin. Anything from genetic disorders, any of the Hepatitis viruses, Alcohol, and diet (You do not have to be obese to have a fatty liver), but it is NOT a death sentence, and once the cause is removed (example, excess iron for hemochromatosis patients should be regularly removed... an alcoholic must stop all drinking etc...) If done, most patients will never need a liver transplant and can actually begin to reverse signs of cirrhosis. How cool is that??

Spread the word! Live Life then Give Life!!

Friday, April 23, 2010

Niagara Falls goes Green for Organ Donation

When Canada supports organ donation awareness... they go big! This is the 3rd year that Niagara falls has been illuminated green for awareness.


Thursday, April 22, 2010

Earth Day... What better thing to recycle then Life and Hope!?!

When you think of recycling you think of plastic and glass, shift your perspective and think of organs!

Register to recycle your organs/tissue when you're done with them and get the facts on everything you need to know at:

it's not just me... Ricki agrees! That CHICK has gone GREEN!!


A few people Larry stalks... errr, check's up on.

Hey guys... I am not feelin 100% this morning and am in need of a favor. My friend Jenn is in recovery from her liver transplant and though complications and signs of rejection are very common for transplant patient soon after surgery, she is having some problems and needs our prayer and good vibes! She is very inspiring to me... not only is she a younging like me (yup..I'm. 29 years young) her brother donated part of his liver to her, she is a military fiance' and all in all just a cool gal! My buddy!!

Another girl (whom I don't know, but follow) however starting to do well from her lung transplant about 6 weeks back.  You wanna see inspiring, Rachy was in hospice just months before she fought to get a transplant. She is only 22 (i believe) and the strongest warrior yet!! 
 Here is her story.

 Rachy's story - Anything but ordinary

Monday, April 19, 2010

Larry Jr. and more on Children with HCV

 Tonight, I laid my head on River's chest as he slept just to listen to his little heart pounding away. I don't know if it is because we did some gardening and I was up and moving around a lot but Larry has been "uncomfy" to say the least. So while my two men slept I started to become a tad bit emotional thinking about my little angel next to me who carries the same HepC Virus as his momma. He is by far right now the healthiest 4 year old I have ever seen... and I just want to continue that. But how? I get no do-overs with his health and though right now I would never even consider treatments on him because I just feel the side effects are to many and unknown for the Peg-intron treatments I went through almost 10 years back. So what do I do? Well, obviously it has been hard to stay focused on my own liver health when my son is HepC positive, but I'm learning our managements are pretty much the same, minus all the prescription drugs.
Eating healthy and exercise are key for River right now along with his multi-vitamin and extra Vit C. He is on no medications and (Thank God) has ever even needed antibiotics. We don't do any over the counter drugs unless that kid has a fever over 100 (or if he says it hurts...) River actually loves salad and raw veggies and is not the biggest meat eater either, and since this house now cooks everything to stay within a sodium budget (Even Jason has become a HUGE advocate with this, and actually finds certain chips and stuff to salty for his palette now too!)

River will also now have his own binder like mom (with just labs for now). His first test will be to see if he has anything genetic, like iron over-load or deficiencies that can harm the liver over time. Every year after, I will MAKE them check virus levels AND overall liver function. I will also periodically, throughout the years, MAKE them do an ultrasound on lil Larry Jr. (nothing invasive or radioactive unless 100% pre-approved by me, dad, and google ..hehehe..)
With all of that, lots of prayer, and hope for a cure - River should never need a new liver. However, if he ever does, my "plan B" of making sure that Organ Donation shortages are a thing of the past!!
So I will leave you with this before they find me sleeping face down in facebook tomorrow morning.

Tuesday, April 6, 2010

State Report Card for Organ Donation

I was actually a bit shocked when I saw this article. 1/2 of our states do not even have a proper sign up process or web access (What rock has the state that doesn't have a web sign-up page been hiding under?) Anyway, I thought I would post the report card.... California isn't even on the top 20 states. Louisiana is the 20th with just over 55% of their licensed drivers registered heroes... errr donors. Wow!! That is pretty sad. And I always thought us Californians were soooooo cool!

 Process May Contribute to Low Organ-Donor Rate
When I started thinking about writing about New York State’s exceptionally low number of registered organ donors — 13 percent of people 18 and older — I remembered that I had never signed up on the official registry to designate myself a donor. So I went online, assuming I would be able to click somewhere quickly, and was delighted at the prospect. How many virtuous impulses can you act on in the amount of time it takes to order staples from Fresh Direct?
Except that it was nowhere near as easy as getting broccoli delivered to my door. I had to print out a form and mail it. But my printer was broken. So I figured I would get to it at the office. (Note to self: bring a stamp.) I glanced at the form. What, specifically, did I want to donate, it wanted to know: Bone and connective tissue? Heart with connective tissue? Pancreas with iliac vessels? The next thing I knew, I was on, perusing overpriced prepared foods and wondering if there was a Twitter feed highlighting specials. My thoughts could not drift quickly enough. A therapist might call it dissociating; my 8-year-old nephew’s technical term would be “grossed out.”
Were I not writing about the subject, I would quite likely have avoided it forever — which puts me in good (or, I should say, equally flawed) company, said Elaine Berg, president of the New York Organ Donor Network. In her opinion, the snail-mail process is a major barrier to increasing New York’s low rate of registration. All but 5 of the 49 states that have organ donor registries — Vermont is the holdout — allow for an electronic signature. That enumerated list of donation options is another hurdle. “It even turns me off,” Ms. Berg said. “It becomes a visual.”
Only four states rank lower than New York on the recently released national report card from Donate Life America, a national advocacy group.
It’s bad enough that New York, with all of its financial resources and brainpower, often cannot seem to get its act together to tackle the hard problems, like fixing schools or reducing health care costs or balancing a budget; but when this unusual collection of talent and creativity cannot handle the no-brainers, you really start to worry.
Ms. Berg has been working with the State Department of Health for years to make progress on an electronic signature, and a bill that would enable one is finally wending its way through the Legislature.
But the department maintains that the enumerated list is the best way to meet the requirements of the legislation governing the registry, which was established in 2000 but became binding in 2008. The law states that “the registry shall provide persons enrolled the opportunity to specify which organs and tissues they want to donate.”
So let them, Ms. Berg said. As many other states do, give would-be donors a blank space in which they can specify, or give them two options: “All” and “Everything except (blank).” As a journalist, I’m all for full disclosure, except for full disclosure about the gory details of a gesture I’d like to make regarding my organs in the event that I end up brain-dead on a respirator.
It’s amazing how a matter of marketing can mean so much for a matter of life and death. In the downstate region of New York, which includes the city, Long Island and the five counties immediately north of the city, Ms. Berg said, 8,000 people are waiting for organs.
In the downstate region, about 600 people die a year under circumstances conducive to organ donation (the typical qualifying donor is a middle-aged stroke victim); in these emergency circumstances, New York has around a 50 percent consent rate — much better than the 13 percent on the official registry, but still below the 67 percent rate nationally.
And yet cynicism plays in: New Yorkers are more likely than the average American to think doctors put less effort into saving the lives of organ donors, Donate Life America reports.
Also, the state’s cultural diversity clearly makes it hard to get the message out and understood. But the numbers on the registry are still surprising, considering it’s a region with such high organ donation needs, with obesity rates creating demand for kidneys and hepatitis-C rates doing the same for livers.

I resolve to reconcile my stamp and broken-printer problems, but until then, let the record show: Doctors, take my organs, please. Even my iliac vessels. Eww.

E-mail: susan.dominus