7 posts tagged “liver transplant”

Give the Gift of Life on National Donor Day

Posted February 13th, 2013 by

Valentine’s Day is all about showing your love for your significant other.  But what if it were also about showing your love for perfect strangers?

February 14th is National Donor Day, a day of awareness about how registering to be an organ donor can give someone a second chance at life.  Does your driver’s license currently indicate that you are a donor?  If not, and you’d like your organs (as well as potentially your tissues, marrow, platelets and blood) to help someone else after you are no longer here, sign up to be a donor today.  In the time it takes you to register, someone with a life-threatening condition will be added to the waitlist.

Wondering if your registration will really make a difference?  Here are a few statistics that help underscore the need for more donors:

  • 117,001 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives total

In particular, there is a need for more minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation, which is essentially the only treatment for end-stage organ failure (e.g. kidney failure, heart failure, liver failure).

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have thousands of transplant patients among our members, including those with (or still awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through organ transplantation? Read our in-depth Patient Voice report on “Life After a Transplant” as well as our insightful interviews with liver transplant recipient Amy Tippins and kidney transplant recipient Michael Burke.


Know Your ABC’s on World Hepatitis Day

Posted July 27th, 2012 by

Did you know that both hepatitis B and hepatitis C can be transmitted through blood-to-blood contact – but hepatitis B is commonly transmitted through unprotected sex as well?  Also, there is a vaccine available for only one of these forms of hepatitis.  Do you know which one it is? (Answer: hepatitis B)

Because these “silent” infections may not cause symptoms for years, hepatitis B and C are the focus of World Hepatitis Day, which takes place tomorrow, July 28th, and is sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). (There is another form of this viral infection called hepatitis A, which is typically transmitted through contaminated food or drinking water.)

World Hepatitis Day 2012

The reasons for greater awareness are stark:  the WHO estimates that two billion people have been infected with the hepatitis B virus and approximately 240 million people are living with chronic liver infections. Approximately 600,000 people will die every year from the consequences of hepatitis B.  In addition, there are around 150 million people chronically infected with hepatitis C worldwide, and more than 350,000 die each year from related liver diseases, according to the WHO.

Despite these alarming figures, hepatitis remains poorly understood, and the majority of those infected are unaware.  Should their infections become chronic, people living with either hepatitis B or C are at risk for serious liver complications, including liver cirrhosis and liver cancer.  In some cases, a liver transplant may be required.

You can learn firsthand about these conditions and their complications from our hepatitis patients at PatientsLikeMe.  As of today, 88 patients report hepatitis B, while 299 patients report hepatitis C.  In addition, 522 patients have undergone a liver transplant to replace a diseased liver.

If you haven’t been tested for hepatitis – or you want to know more about the hepatitis B vaccination – talk to your doctor at your next visit.  If you’re living with chronic hepatitis, we invite you to join our supportive community today.


Preparing for Life After an Organ Transplant

Posted April 6th, 2012 by

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented.

What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful.

Click Here to Read or Print This Free Report

Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting the most out of inpatient therapy (hospitalization).


Love Your Scars: An Interview with Transplant Recipient Amy Tippins

Posted March 30th, 2012 by

After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993.  Two years ago, she received a ligament allograft using donor tissue.  How does she feel about it all today?  Check out our interview with this transplant activist to learn how these experiences led her to found RockScar Love, a clothing company that celebrates sexy scars, the lessons they teach and the strength they create.

Amy Tippins, Transplant Recipient and Founder of RockScar Love and the "Scars R Sexy" Campaign

1.  Tell us about your post-transplant life today.

My life is amazing now.  When I was sick, I had goals of things I wanted to do over the years that I have started checking off my “accomplished” list.   I own my second house, I have learned how to surf, I currently do spin class for exercise, I own my own business.  My life has unlimited possibilities, and I am excited to see how I will continue to pay it forward.

2.  What led you to launch Rock Scar Love and the “Scars R Sexy” campaign?

I started RockScar Love Designs because I wanted to do something with my life that was inspiring.  When I was young and was coming out of my medical challenges I felt that I was “imperfect” and I had failed as a woman.  What I learned quickly was that imperfection was perfection!  That was what RockScar Love was for me….a way to spread that message and that belief.

One of the Scars R Sexy T-Shirts Created by RockScar Love

Scars R Sexy” is a campaign that came about through Live Wright Society and RockScar Love desiring to bring their two messages of “love your scar” and “pay it forward” to create a platform for people to tell their stories and show how they are making a difference in the lives of others.

3.  What kinds of scars and health conditions are represented in the campaign?

Any and all scars and medical conditions.  There is not a person on this planet who does not have some type of scar.  As a human race, most of our scars are on the inside.  I have my own collection of internal scars.  This campaign represents all of those scars – physical and mental.  If each person was a little bit more open with what they struggled with and what they have learned, then maybe the rest of society would struggle just a little bit less?

4.  I understand there’s a video contest planned.  How can our members participate?

Submit your “scar story” video to our Facebook page with “Scars R Sexy” in the link.  We will be uploading all of the videos to a website for public voting and will be posting very soon when the video contest voting dates will begin.  Watch our Facebook page!  Once the winning video story has been validated, then we will be awarding the winner with an iPad 2.


Have a Heart Today. Become a Donor.

Posted February 14th, 2012 by

Registering to Be a Donor Is About Giving Life to Another

February 14th is Valentine’s Day.  But it’s also National Donor Day.

Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life:  organs, tissues, marrow, platelets and blood.  All of these can be donated to help save and/or improve the lives of others.

Here are a few numbers that help underscore the need:

  • 112,945 people are currently waiting for an organ transplant
  • 18 people will die each day while waiting for a new organ
  • 1 organ donor can save up to eight lives

Does your driver’s license indicate that you’re a donor?  If not, and you want to give others a second chance at life, sign up to be a donor today.  Worried you’re too old?  Don’t be.  The condition of your organs is more important than your age, and there are only a few absolute exclusions (such as HIV infection, active cancer and systemic infection).  So don’t rule yourself out when there’s a chance you could help.

Finally, there is a particular need for minority donors.  While organs are not matched according to race/ethnicity, there is a greater likelihood that compatible blood types and tissue markers – the critical elements of the matching process – will be found among members of the same ethnicity.  Thus, a greater diversity of donors could potentially increase access to transplantation for everyone.

A Snapshot of the Organ Transplant Patients at PatientsLikeMe

Are you awaiting an organ transplant – or the recipient of one?  Join PatientsLikeMe to connect with others like you.  We have hundreds of transplant patients among our members, including those with (or awaiting) a heart transplant, kidney transplant, liver transplant, lung transplant and pancreas transplant. What’s it like to go through transplantation? Read our recent interview with kidney transplant recipient and type 1 diabetes patient Michael Burke.


What Do You Know About Hepatitis?

Posted July 28th, 2011 by

World Hepatitis Day Is July 28, 2011

Today, July 28th, marks the first official World Hepatitis Day sponsored by the World Health Organization (WHO) and the World Hepatitis Alliance (WHA). Hepatitis kills more than one million people each year, while millions more suffer acute sickness or long-term ill health. The goal of this new event is to raise awareness of this global health issue while increasing prevention and control efforts.

Specifically, World Hepatitis Day focuses on hepatitis B and hepatitis C, which are both viral infections. Approximately 1 in 12 people worldwide is living with chronic hepatitis B or C, which represents a far greater prevalence than better-known conditions such as HIV or cancer. Yet hepatitis remains poorly known and understood, and the majority of those infected are unaware. Hopefully that can begin to change. With that goal in mind, here are a few quick facts to help raise your knowledge.

Did you know that…

  • …there is a vaccine available for hepatitis B that is effective in approximately 95% of cases?
  • …both hepatitis B and C can be transmitted through sharing household items such as razors and toothbrushes?
  • …these viral infections are considered “silent” because many people experience no symptoms for years?
  • …if a hepatitis B infection doesn’t resolve on its own and becomes chronic, it can cause liver cirrhosis or liver cancer? And a liver transplant may be needed?
  • …hepatitis B can be spread through unprotected sexual contact, while hepatitis C is contracted through blood-to-blood contact only?

If you didn’t know a few of these facts, learn more about viral hepatitis and how it can be prevented and diagnosed today. You can also learn firsthand from our hepatitis patients here at PatientsLikeMe. As of today, 156 members report hepatitis C while 41 patients report hepatitis B. In both conditions, Prograf, an immunosuppressant drug used to prevent organ rejection following an liver transplant, represents one of the most commonly reported prescription medications while men represent a higher percentage of our membership: 62% for hepatitis C and 63% for hepatitis B. There are also more than 600 discussions of hepatitis across 29 different forum rooms at PatientsLikeMe.

Are you living with chronic hepatitis B or C? Break the silence and share your story in any language on the WHA’s global “Wall of Stories.”


PatientsLikeMe and Novartis Unite to Launch Community for Organ Transplant Recipients

Posted March 9th, 2010 by

Recognized by Fast Company as two of the 50 Most Innovative Companies in the World, PatientsLikeMe and Novartis have united to picture-4launch a new community for organ transplant recipients (including kidney, lung, heart and liver).  In the news release announcement, PatientsLikeMe President Ben Heywood and Novartis CEO Joe Jimenez discuss what impact this community could have for organ recipients.  Ben also discusses the community in more detail as part of our PatientsLikeMeOnCallTM podcast series.  Listen in to learn more about our new programs PatientsLikeMeMentorsTM and PatientsLikeMeInMotionTM.

PatientsLikeMe member dwilliams