Facebook Groups for Transplant Recipients, Donor Families, and Pre-Transplant Patients

FACEBOOK GROUPS

I am relatively new to Facebook ... using it mostly to keep up with all those things that Facebook uses to distract you from the real world, it seems!

However, just recently I discovered that there were some Facebook groups comprised of people who have had transplants of all kinds, liver, kidney, kidney and pancreas, lung, double lung, heart, and multivisceral (liver, kidney, pancreas, large and small intestines).  Of course, there are even more types, such as corneal, islet cell and stem cell transplants, bone marrow transplants, and ... well, science just keeps on providing us all kinds of new ways to stay alive a little longer each day.

Two groups which I have joined (Both are "closed groups," which means you have to ask to join in order to follow posts to the page) have become some of my favorite places to be when it comes to all that Facebook has to offer.


ORGAN TRANSPLANT SURVIVOR (FB)

This FB group, Organ Transplant Survivor, is watched over by Joe Kralicek, who sees to it that the posts stay on topic and that it is a place where transplant recipients, family members of donors, and pre-transplant patients can come and ask questions and get news about what being a transplant patient and survivor is all about.

The description of the site reads as follows:

"A friendly group of organ transplant recipients, donors and family members where you can find support and insights into all things transplant. Founded by Andre Gonzalez in 2008, a two-time Liver transplant recipient, he and many others are here to provide information, spiritual support and advice. We have all types of transplant recipients here and you are welcome to share your transplant experiences, ask questions and come to know that you are not alone with your transplant ... " 

With nearly 6,700 members from the United States and all over the world, it is a very good place to get support and advice from those who have "been there and done that," even if you can count yourself among those already.

THE TRANSPLANT COMMUNITY OUTREACH (FB)

The description of Transplant Community Outreach's page says:

"We are an online support group of individuals and families who are recipients, are waiting for a transplant, are donor family members, caregivers, or those who have a connection with organ donation and transplantation.

"We meet online to discuss health issues related to our experiences, share our personal stories, and celebrate milestones in our lives.

"We welcome opportunities to offer encouragement to others who have been given this Second Chance at Life but who may be experiencing health or emotional difficulties and want our support.

"To offer thanks to our Donor Family members who gave us The Gift of Life.

"More than 20,000 are performed in the U.S. each year, but 120,000 people currently need the operations and more than 6,500 die waiting."

With more than 5,800 members there is a lot of news and support to be found at this group as well.

OTHER FACEBOOK GROUPS

There may be more, and I am sure there are, but these two have so far kept me pretty busy at posting, reading and replying about all I am curious about when it comes to the world of organ transplantation.

It Started with Starzl

THE OFFICIAL DR. THOMAS E. STARZL WEB SITE

In developing the lists of links you see at LiveringProof.com, I accidentally discovered an interesting site established by the University of Pittsburgh.  The site honors one of the most famous surgeons of modern history, Dr. Thomas E. Starzl, who is considered to be the "father of liver transplantation."

Dr. Starzl just recently (March 7) passed away at the grand old age of 90, and one might say he has multiple lifetimes of accomplishments to his credit, not to mention the number of lifetimes he has extended thru his research as a scientist and his skills as a surgeon. If you are interested in the history of organ transplantation there is plenty to find at this site.

Screenshot of The Official Dr. Thomas E. Starzl Web Site

A WONDERFUL, BUT COMMONPLACE WORLD

I remember when most any kind of organ transplant was considered to be experimental, even when entirely successful.  Success used to be measured in just in getting a transplant recipient beyond a year of life with their transplanted organ.

Literally millions of years have since been added to what would have been the natural lifetimes of the people who have received the benefit of an organ transplant.  Despite this success, one must be reminded that if not for the thoughtfulness and kindness offered by so many donors and their families along with the loss of the times of their lives with their friends and family, none of the successes of organ transplantation would have been possible at all.

Now, almost fifty years later, just over 149,000 liver transplants have been performed in the United States alone.  A majority of recipients are living much longer than just a year and certainly longer than an organ transplant had not been an option.  Kidney transplants are far more common and when one adds the hundreds of thousands of all human organ transplants which have taken place around the world, organ transplantation seems "commonplace."

One could say it is a wonderful time to be living in such a "commonplace" world.  I do.

LINKS TO LIVER BY!

HELLO!

My name is Philip. At the end of 2013 I was unfortunate enough to be so ill that I needed a liver transplant ... yet I was fortunate to be able to qualify for and receive a liver transplant in the late summer of 2015 at Indiana University Medical Center (or University Hospital) in Indianapolis.

As a result I, along with many others, can say that we are "livering proof" that the organ donation system in the United States does and can work for anyone, all due to the thoughtfulness of just one person, the organ donor.

If you want to know more about what it is like to get a organ transplant in general or at University Hospital in particular, this is a place to discover more from at least one patient's perspective, mine.

Yet if you are new to the world of needing a liver transplant, you are not alone, by any means.  As I write this nearly 149,000 people have had a liver transplant, and that is just in the United States.  Just think what the number must be when all liver transplants from all around the world are taken into account.

The links to the right are arranged by topics that should help you to get to some interesting websites, which are arranged by topics that should be helpful to anyone who is in need of a transplant or just curious about the many issues involved in getting one.  You might think of them as a "transplant toolbox" of websites.

The following items are the links that will take you to some more recent stories and news about the transplanted world.


TRANSPLANTED!

• Organ Donors Gave More than 2 Million Years of Life to Sick Patients (LA Times, Jan. 29, 2015)
• U.S. Organ Transplants Reach 30K Milestone, Thanks to Increased Donations (Jan. 13, 2016)
• Liver Transplant Recipient Shares Story (SDPB Radio, March 29, 2017)
• Celebrating 35 Years after a Liver Transplant (YouTube, July 20, 2016)
• The woman with the 100-YEAR-OLD kidney: 68-year-old has the world's oldest transplanted organ - and it's still going strong! (Aug. 16, 2016)
• Longest surviving liver transplant patient is 70-year-old Devizes man (Gazette & Herald (UK), Feb. 8. 15, 2015)
• How an adopted woman’s search for her family helped save a relative’s life (WP, July 7, 2016)
• A startling ending in mother’s quest to find recipient of deceased son’s heart (WP, July 26, 2016)
• Alive with a New, Old Liver (Feb.3, 2014)
• Giving Life: Organ Donation in Australia, in Pictures (2016).

These and even more such stories can be found at my Pinterest board (Transplanted!) or at my Twitter feed (Transplant Stories).

A SYSTEM THAT WORKS . . . & HOW TO MAKE IT EVEN BETTER

• Steve Jobs’ liver—and the quest for a better organ algorithm (ARSTechnica, March 15, 2017)
• 10 Things Your Doctor Won’t Tell You About Organ Transplants (EverydayHealth.com)
• Using Tweets and Posts to Speed Up Organ Donation (May 10, 2016)
• Finding Organ Donors Concealed in Plain Sight (May 17, 2016)
• Need a Kidney? Not Iranian? You’ll Wait. (July 31, 2015)
• In Iran, unique system allows payments for kidney donors (AP, Aug. 25, 2016)
• It’s Time to Compensate Kidney Donors (Aug. 7, 2015)
• Why Don't More People Want to Donate Their Organs? (Nov. 10, 2014)
• Should the Government Decide if You're an Organ Donor? (Feb. 12, 2016)
• Would you opt out of saving my life? (Dec. 29 ,2015)
• Opting In vs. Opting Out (NYT, Sept. 26, 2009)
• Where You Live Matters for Lifesaving Liver Transplants (May 22, 2014)
• New York is 49th Out of 50 States in Organ Donation (April 7, 2014)
• Liver Transplants Hard to Come by in California (Bakersfield.com, 2016)

DONOR STORIES

• Late IndyCar Driver Justin Wilson 'Saved 6 Lives Today' by Donating Organs, His Brother Tweets (LA Times, Aug. 25, 2015)
• Organ donation on the rise as fatal drug overdoses mount (WP, Aug. 17, 2016)

TRANSPLANT TECH

• Organ Transplants Have Come a Long Way but Hurdles Remain (July 11, 2016)
• UCL Scientist's New Technique to 'Repair' Damaged Livers (West End Extra (UK), Aug. 6, 2016)
• The Great American Kidney Swap (NYT, April 30, 2015)
• Seoul National University Hospital boasts lead in laparoscopic liver transplants (The Korea Herald (KoreaHerald.com), March 31, 2017)
• How An Economist Helped Patients Find The Right Kidney Donors (NPR, June 11, 2015)
• We Now Have the Cure for Hepatitis C, but Can We Afford It? (Sept. 1, 2014)

CONTROVERSIES

Marijuana can cause health problems, if you smoke it and need a transplant.  Some criminals in prison need transplants and can't get one, and China has executed prisoners for people who need an organ transplant.  These are just some of the controversies involved in the U.S. and around the world with regards to organ transplantation.

• In need of a kidney transplant, he got kicked off the list for using medical marijuana (The Herald Sun, March 29, 2017)
• Yes, your doctor might Google you (MedicalXPress.com, March 30, 2017)
• Law professor sues to secure medical treatment for inmate - Alleges treatment for Hepatitis C, cirrhosis withheld (The Cavalier Daily (Univ. of Va. (Charlottesville)), April 3, 2017)
• Ethical Questions Raised on China's Organ Donation System (SFGate.com, Aug. 28, 2016)
• Does China Still Harvest Organs of Executed? Doctors Divided (SFGate.com, Aug. 30, 2016)

DRUGS & DRUG PRICES

Ursodiol (mentioned in these articles) is a drug used by liver patients pre- and post-transplant, and it is one of those drugs which has made the news of late due to inordinate price increases, especially for a generic drug. 

• Here's why drug prices rise even when there's plenty of competition (LA Times, Sept. 1, 2016)
• Some Generic Drugs See Huge Price Increases (Medscape.com, Sept. 15, 2016)
• EpiPen Maker Also Hiked Prices on a Slew of Other Medications (NBCNews.com, Aug. 24, 2016)

GETTING TO STAGE 4 & THE NEED FOR A TRANSPLANT

Hepatitis C has historically been the cause for the need for most liver transplants, but with a cure now available, NASH is ready to take its place as the number one "liver killer."

• NASH is the 21st Century's Looming Public Health Threat (Jan. 30, 2016)

POLICY

• Reducing the Organ Waiting List: Key Actions and Opportunities for the Future (WhiteHouse.gov, Dec. 21, 2016)

FACEBOOKING

• The Wating List
• More to come . . . 

TWITTERING

• Working on it . . .