LifeBridge Newsletter November 2011

 

 

An international non-profit grop providing emotional support to transplant recipients and candidates, organ and tissue donors, and their families.  TRIO also promotes public awareness of organ and tissue donation, and advocates the fair allocation of donor organs and tissues.

Monet Thomson, Editor                                                                                       November 2011, Vol 21, No. 4                     ____________________________________________________________________________________________________

 

National Donor Sabbath Celebrated in Livermore

By Barbara Costerus

 

A warm ovation was the reaction to Bob Moss' talk during worship services at Bart and Barbara's church, First Presbyterian, at our third annual commemoration of National Donor Sabbath on November thirteenth. The congregation was clearly impressed by Bob's description of his experiences during the long five-year wait as a very ill person, and then the excitement of the heart and kidney transplants. Particularly touching was the account of his reaction to learning that his new lease on life was made possible by the death of a young man, Reuben, and his on-going connection to Reuben's family. 

During coffee hours following the two services, Bob and Cheryl, Bart and Barbara, and Linda O'Hara answered questions  while everyone enjoyed a piece of "Donate Life" cake provided by church member Sue Miller, mother of a kidney-pancreas recipient. We are grateful for our church's enthusiastic support of organ donation and thankful to Bob and Cheryl for the time they devoted to this event.

In Memoriam

Melissa Boccia passed away at home on July 27 from complications of End Stage Renal Disease. A celebration of her life was held on August 3 in Byron. At the celebration, we learned some interesting things about Melissa:

• she saw the Apollo 15 launch.

• she loved cats and every day went to the Humane Society after work.

• she grew up on Waikiki, and so it was quite a shock when the family moved back for awhile to the brisk weather of their native Scotland!

Last year, Melissa attended the transplant games. In the early part of this year, she was diagnosed with calciphylaxis, and told us of her diagnosis at the June TRIO meeting. Melissa was 46 years old.

 

We send our heartfelt sympathy to Melissa’s loving parents, Heather and Archie, and will really miss seeing Melissa at our meetings.

Mary Margaret Morton passed away on April 22 at her home. Mary Margaret joined TRIO in 2003, and was on the waiting list for a liver at that time. A memorial mass was held on May 9 in Los Gatos.

Bruce Turner (1953-2011) passed away in September while awaiting a second liver transplant. A celebration of his life was held in October at his parents' home in Lafayette.

 

 

President's Corner




As the year winds down, I want to make special mention of and salute our members Ana Stenzel and Isa Stenzel Byrnes on their truly unbelievable year for "The Power of Two." It seems like only a few TRIO holiday parties ago when Ana came with copies of their newly released book. I read it and assumed that would be, barring a sequel, pretty much it. There are a lot of transplant books out there competing for a limited audience. While it had wonderful stories and information, I was particularly fascinated by their story of transplant in Japan and how a country takes a diametrically different viewpoint on transplantation, much to the detriment of people there trying to receive the gift of life. You may recall the TRIO meeting devoted entirely to their presentation on organ donation, or more precisely the lack of it, in Japan, and the unique characteristics of the culture that likely were behind this. It was perhaps the most interesting and useful TRIO meeting I’d ever attended.

Surprise would be an understatement when I learned that a movie documentary was being made from the book. It seemed like an unlikely cinematic topic. Of course I’m the guy who thought anyone who tried to make a movie out of Winston Groom’s "Forest Gump" wasn’t thinking straight. By the time of the 2010 Transplant Games in Madison, WI, the cameras were running non-stop, and I can only imagine the challenges faced in doing the many scenes in Japan. Had I not already been convinced, it was clearly a moment to etch "Never Underestimate the Power of the Stenzel Twins" in my brain!

My first look at the nearly completed product was in a San Francisco office conference room with perhaps a dozen in attendance. Producer Marc Smolowitz was seeking suggestions for how to reach communities with the movie, and I was amazed at the not-quite finished product that looked theatre ready to me. Nearly six months later when Bonnie and I saw it at the Castro Theatre, the large crowds that showed up at each viewing were a testament to all of the efforts. What seemed particularly unique was how the attendees a cross-section from the transplant, cystic fibrosis, health care, political, education, entertainment, and local communities. TRIO received some good publicity as well. If you ever need to shoot a movie, Marc would be a great person to start with, along with Andrew, Isa and
 Ana.

If you haven’t already gone to see "The Power of Two," make it a point to do so. Time and place information can be found on www.thepoweroftwomovie.com. It’s rather jaw dropping to see all the film festivals that the movie has been entered in, and how many times it won. And make it a point to personally thank Ana and Isa when you see them. The film is a superb story on the power of organ donation and I believe will make a difference. 

Meanwhile, back at the ranch, I need a few more faces on our rather informal governing board as well as for some specific slots that will be vacant. If you are willing to serve, please contact me or risk being elected in your absence. You should also be aware that 2012 marks the 25th anniversary of the TRIO organization, and a celebration of this is now loosely planned for late September in the organization’s birth city, Pittsburgh. I would love for more than just me to take the time to attend. More information will follow as I receive it.

I have been getting information for a camp to be held next March for kids ages 6-17 who have liver disease, are awaiting a liver transplant or have had one, as well as for their immediate families. The camp is about 40 miles outside of Los Angeles in the Antelope Valley, and one attraction is that it is an all-expense paid outing put on by "The Painted Turtle" organization. Offhand, I can’t think of any of our members who would qualify, but if you know of someone, please let me know.

Lastly, if I don’t see you at the Holiday Party, or even if I do, have a wonderful Christmas season and a happy and healthy New Year!

Steve Okonek, SF Bay Area TRIO President

okoneksteve@comcast.net

 

 

 

 

 

 

The Bay Area Premiere and the Tokyo Premiere of The Power of Two

  

 

 

 

 

 

 

 

 

 

 

Medical News

Kidney recipients freed from immunosuppresant drugs

Excerpted from American Association for the Advancement of Science
STANFORD, Calif. — Investigators at the Stanford University School of Medicine have developed a protocol that allows kidney-transplant recipients to jettison immune-suppressing drugs. The protocol could also spell substantial savings to the health-care system.

Eight of the 12 patients discussed in the small study have now been off of immunosuppressant drugs for at least one year, and in some cases for longer than three years, without any apparent damage to their new kidney. None of the 12 patients has experienced kidney transplant failure or serious side effects. In all 12 cases, recipients were supplied with immunologically matched donor kidneys from close relatives. But the trial, which has been actively enrolling new patients, is now expanding to include imperfectly matched donor-recipient pairs as well.  Samuel Strober MD is a professor of medicine and the new protocol's inventor.

The new technique combines targeted irradiation of a patient's lymph nodes, spleen, and thymus with the administration of stem cells drawn from the kidney donor's blood. It took more than 30 years of mouse research, Strober said, before he finally came up with just the right mix of agents for "avoiding a civil war" among dueling immune systems.

Dialysis is expensive, costing close to $70,000 per patient per year. Failure of a transplanted kidney costs the health-care system $80,000 during the year when the failure occurs. The new protocol carries a total expense estimated to range from $20,000 and $40,000, so it has the potential to pay for itself within a few years. And it requires no additional hospital time.

Under the protocol, the kidney recipient receives radiation treatment and injections of antibodies while still in the hospital a few days after surgery, and additional radiation doses over the next several days on an outpatient basis. About 10 days after surgery, the recipient gets an injection of cells taken from the organ donor. All patients initially are put on two of the same immune-suppressing drugs (plus antivirals and antibiotics) that transplantation patients would normally get.

After a month, one of the drugs is withdrawn; thereafter, the Stanford team, led by Strober, continually monitors numerous parameters including the mixing of donor and recipient immune cells. If that mixing seems in balance six months after surgery, the recipient's second immunosuppressant-drug dose is discontinued. If the mixing hasn't been achieved, the patient remains on the drugs until it is.

The trial has been funded by the National Institutes of Health. The study of perfectly matched pairs is continuing with philanthropic support from the Stanford Institute for Immunity, Transplantation and Infection. Patients considering enrolling can learn more about the study by contacting the study coordinator, Asha Shori, at ashas@stanford.edu.

Drug is shown to cure most hepatitis C cases

San Francisco Chronicle, 6/23/2011

A new antiviral drug that recently won federal approval to treat hepatitis C can effectively cure most patients of the infectious disease. Incivek and an antiviral called Victrelis were approved by the U.S. Food and Drug Administration lin May to treat people with the most common strain of hepatitis C.

"You’re talking about a disease that affects millions of people, and now we can more than double the response rate to medication. This is a very big deal," said Dr. Joanna Ready, chief of gastroenterology at Kaiser Santa Clara, who handles all of the hepatitis C cases there.

Both drugs are used in conjunction with the previous standard treatment for hepatitis C. That treatment is a toxic cocktail of weekly intravenous chemotherapy drugs and an older antiviral that patients took for at least 48 weeks if they could tolerate the side effects, which included flulike symptoms, anemia, and depression. The new antiviral therapy bumps up the chances of a cure to 79% for those who have never been treated, according to the recent studies, which looked at almost 2,000 hepatitis C patients. People who had been treated once and relapsed had an 86% chance of being cured. And those who hadn’t responded at all to earlier treatment had a 32% chance of a cure, a sixfold improvement  Heptitis C kills about 10,000 people every year in the United States, and its the leading reason for liver transplants.

 

 

Member News

Katie Lutz received a kidney on Sept 21st!

Rusty emailed the good news on Sept 22nd:

"My lovely wife got the green light from UCSF just 2 weeks ago and here we are at UCSF waiting for her to return to her room with her new kidney.... Neither of us can believe our good fortune. As all TRIO members know: this is a life changing event. We have also been holding space for our donor and family who are probably on the other end of the happiness spectrum. We bless them for their open hearted generosity. Katie is doing well."

November 8 update from Rusty: "Katie went to UCSF for her biweekly check in and results are FANTASTIC!"

Former chapter President Linda O’Hara was interviewed recently by the Danville Express. When asked about her favorite activites, Linda replied: "I like to scrapbook all year long. I’m very involved with it and sometimes go on scrapbooking weekends to various locations. I’m also involved with an organization called TRIO (Transplant Recipient International Organization), and I’m a kidney transplant recipient of 24 years." Thanks for putting in a plug for our favorite organization, Linda!

Thanks to Robert Furniss for sharing information about Senate bill 1454, the "Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011". This bill would extend Medicare coverage of immunosuppressive drugs to kidney transplant and dialysis recipients who

have exceeded the 36 months of coverage under Medicare Part B. This drug coverage would be available until the individual became fully eligible for

Medicare. The bill has been referred to the Senate Finance Committee. Stay tuned for whether it will come before the full Senate for consideration.

Speakers at Recent Meetings

In July, we were lucky to have speaker Kathy Clark of California Transplant Donor Network. Kathy received a liver 6 years ago and is, among other things, a bowling champion at the Transplant Games!

We learned:

• CTDN serves Northern and Central California and Northern Nevada (Reno).

• CTDN has 500 volunteers.

• There are 58 Organ Procurement Organizations (OPOs) like CTDN in the US.

• There are 4 other OPOs in California.

• UNOS (the United Network for Organ Sharing) maintains "The List" for those awaiting transplants who are considered imminent deaths.

• Some states have 70% who sign the donor registry. Only 35% of Californians who are eligible have registered to be organ donors.

• As of July, when you renew your license at the DMV, you must say "yes" or "no" to the question of whether you wish to register to be an organ donor.

• 18 people a day die waiting for an organ in the US

• Of the 2.6 million annual deaths in the US, only 7,000 are actual donors.

• Though 8 organs can be donated, on average only 3.5 are procured.

For more information, visit www.ctdn.org

www.donateLIFEcalifornia.org

 

In November, we were lucky to have speaker Tammy Lindsay, Transplant Manager of AlloMap, a Bay Area biotech firm. AlloMap has developed a blood test that eliminates the need for some of the frequent biopsies that heart transplant recipients face following their surgeries.

This treatment is available for patients:

• with a stable heart transplant

• 15 years old or older

• at least 55 days post-transplant

The blood test analyzes genes, specially RNA, which shows what’s going on in the system dynamically. Though sophisticated, an AlloMap test costs $3,400, less than the $6,000 to $8,000 cost of a heart biopsy. AlloMap is also investigating developing the gene test for Alzheimer’s and lung transplant patients.

For more information, visit www.allomap.com

Tribute

by Sue Miller

When I finally had the courage to open the FaceBook page with trembling fingers I stared with tear-filled eyes at the images that came up on my computer. I had waited until the total private and quiet calmness of the hours just after midnight. This was what I both longed and dreaded to see and wasn’t sure how I would be affected, so I covered myself with the soothing blanket of deepest night. The light of the computer screen was my only beacon.

When my eyes focused on what I had to see, a long sigh of sadness and a faint moan automatically escaped my lips. There he was: the most powerful and important stranger in my life. Now I had a face to add to everything that brimmed over in a heart and mind filled with him. I was utterly fascinated. The two of us were in a hurricane’s peaceful eye. The storm had come before for both of us and more struggle remained for me and mine, but for this moment I could really see him and know who he was.

His photo was an unusual one. He was sitting in darkness facing his computer screen with the unseen photographer or camera out of the picture. He looked at the screen and light fell on his face. His expression was one of total absorption and almost awe, so much so that it looked ethereally beautiful and at peace. I sobbed slightly as I saw his youth for myself. Even though I knew he was only sixteen, I hadn’t been prepared for the slight, pale, sensitive looking young man who was before me. He looked so much younger than his years.

"Oh, God!" I breathed in anguish, in joy, in prayer. Touching his computer image in a gentle and tender caress, my soul reached out in the darkness to thank his generous one. What would he have been – what could he have been if only he had had the chance? Whispering thank you, I thought of the words, "Goodnight, sweet prince, and flights of angels sing thee to thy rest."

When my computer screen was dark again, I cried tears of sorrow and joy for the young man who gave my daughter her life back with the loss of his. In the short span of his years he was that most rare of all beings, a true savior of another. My daughter’s organ donor…..my greatest hero.

 

 

Transplant Brithdays

Carol Jason 9/10/03      Kidney

Marjorie Beckman    9/11/94  Liver

Katie Lutz 9/21/11  Kidney

Rodney Keck 10/4/88  Liver

Gloria Ramos 10/11/00 Liver

Steven Hummer 10/22/94 Liver

Barbara Broz 10/26/88 Kidney

Linda Smith 10/30/08 "LiverHeart"

Kay Richter 11/6/03  Kidney

Stacey Collver 11/22/04 Lung

Future Meetings

SF Bay Area TRIO monthly meetings

2nd Thursday of every month, 7:30 p.m. El Camino Hospital. Next meeting: January 12 (in Meeting rooms E and F near the cafeteria on the ground floor). There will be no meeting in December due to our Holiday Party.

For more information, call 408-353-2169 or visit www.bayareatrio.org

 

Other Local Kidney Support Group meeting
Bay Area Association of Kidney Patients.
 
info@baakp.org, call 650-323-2225 or visit http://www.baakp.org/

East Bay Transplant Support Group
Meets every other month.
Contact Joyce Steinlauf
510-525-5413
joyce@plekss.com