Giving Thanks

HEARTFELT THANKS

 

For most, this is the season of giving thanks. For me the season of giving thanks is unending. I have always appreciated this gift of life God has graced me with, and the experience of struggling through years of illness from liver failure and then being blessed to have received a second chance at life through a liver transplant gifted by a compassionate organ donor family, has served to intensify that appreciation. I have since learned to celebrate life each and every day, even second by second. Of course I love the Thanksgiving holiday, it reinforces and heightens our awareness of the many blessings we have to be grateful for. It also provides me with one more opportunity to express my heartfelt thanks to my family, friends and my organ donor family, all  of whom have enriched my life immeasurably. May you all have a blessed, Happy and healthy Thanksgiving!



 





Transplant Games

TRANSPLANT GAMES of AMERICA

 

As the recipient of a liver transplant in 2008, I was really happy to have the opportunity to participate in my first Transplant Games of America in 2014 in Houston, Texas as a member of Team SoCal. It was a wonderful experience having the opportunity to meet members and supporters of the transplant community from all over the nation and the world. We were there to celebrate the gift of life, to honor organ donors and donor families, and to increase awareness of the critical need for organ donation. We broke bread together, danced, exchanged pins with participants from every state in the United States, and shared stories with old and new friends. Then some of us participated in athletic events. It was exciting competing in various events like cycling, volleyball, track and field, bowling, basketball, golf, corn hole and more. Some won gold, silver and bronze medals for their efforts, but the most rewarding was simply being able to participate. Many of us had survived near death experiences while waiting for organ transplants, and it was no less than a miracle that we were now healthy enough to participate in athletic events. The games gave us a chance to show the world, by our participation in the games, the results of the compassionate gift of organ donation. I am excited about the upcoming 2016 games in Cleveland, Ohio and looking forward to joining my Team SoCal members there to continue our celebration of life, and to help increase awareness and give hope to the thousands on the waiting list for life saving organ transplant.

 

 

 

 



OPOs

ORGAN PROCUREMENT ORGANIZATIONS

 



There are 58 Organ Procurement Organizations (OPOs) in the U.S.  They are responsible for two main functions: 1) Increasing the number of registered organ donors, and: 2) Coordinating the donation process when actual donors become available.  In California, where I currently reside, there are four federally designated OPOs; One Legacy serving Greater Los Angeles, Sierra Donor Services serving Sacramento, Life Sharing serving San Diego, and Donor Network West serving Northern/Western California. The following links provide more detailed information about the locations, responsibilities and operations of OPOs: 

https://en.m.wikipedia.org/wiki/Organ_procurement_organization

 

 

http://organdonor.gov/materialsresources/materialsopolist.html

National Donor Sabbath 2015

NATIONAL DONOR SABBATH

 

Today marks the end of the 2015 National Donor Sabbath weekend (November 13-15) and faith leaders from many religions, donor families, transplant recipients, and donation and transplantation professionals participated in services and programs to educate the public about the need for life saving and healing gifts passed to others through transplantation, while also encouraging people to sign up as organ, eye and tissue donors.  The advocacy of the church for organ donation dramatically increases the opportunity to educate communities about organ donation and transplantation, and results in more people registering to be organ donors. As the recipient of a life saving organ transplant, I am profoundly grateful for the support of the church and all of the advocates who work tirelessly to increase the number of lives saved  through organ donation.

 

 

Hepatitis C

HEPATITIS C: The Stealth Virus

 

Hepatitis C is a virus, or infection, that causes liver disease and inflammation of the liver. Acute hepatitis C is a short term infection lasting approximately 6 months and sometimes clears up because your body is able to fight off the infection and get rid of the virus. Chronic hepatitis C, however, is a long lasting infection and occurs when the body can't get rid of the virus. Most hepatitis C infections become chronic. Without treatment, chronic hepatitis C can cause liver cancer or severe liver damage that leads to liver failure. A liver transplant may be necessary if chronic hepatitis causes severe liver damage (end-stage liver disease) that leads to liver failure. There are six strains (Genotypes) of the hepatitis C virus. Genotype 1 is the most common strain in the United States. Knowing the genotype may help a doctor choose the best treatment plan. Some call Hepatitis C the "Stealth Virus" because it is a slow acting virus and most people have no symptoms and don't realize that they have hepatitis until liver damage manifests itself, sometimes, decades later. That was my case, by the time I was diagnosed with hepatitis C I was at the point of end-stage liver disease. The virus had just about destroyed my liver. Although I do not know, and most never know, exactly how I contracted the virus, my doctor said that the amount of damage to my liver indicated that the virus could have been contracted 25 or 30 years before I was diagnosed with it. The fact that there are no symptoms until serious damage has occurred makes this a very dangerous and, sometimes, deadly virus. Unfortunately I did not discover my hep C until it was too late and only a liver transplant would save my life. I was fortunate to not only have received a liver transplant, but to, subsequently, have successfully completed the 12 week treatment program for hepatitis C, which included a regimen of Harvoni and Ribavirin. It was a hellish 12 weeks, but to be cured of that deadly disease was worth the temporary suffering. The downside of this new treatment is that it is very expensive, making it unavailable to many. The following links provide more detailed information about the hepatitis virus.

 

http://immersive.healthcentral.com/hepatitis-c/d/lbln/living-with-hepc-kim/

 



http://ideas.health.vic.gov.au/diseases/hepatitis-c.asp

Veteran's Day 2015

HONORING OUR V E T E R A N S

 

November 11th is Veteran's Day, a day the nation sets aside to honor those veterans who have served America with honor and bravery, often sacrificing life and limb in defense of our freedom. Many of our veterans are on the waiting list for organ transplants and I pray they will be fortunate enough to get a life saving transplant. As a veteran of the U.S. Air Force I want to wish all of my fellow veterans a Happy Veteran's Day.

 

 



Sabbath

NATIONAL DONOR SABBATH

 

National Donor Sabbath is observed annually two week-ends before Thanksgiving, November 13-15.  Faith leaders, organ donor families, transplant recipients, and transplantation professionals participate in services and programs to educate communities about the need for organ donation and encourage people to register to be organ, eye and tissue donors. 

 

http://donatelife.net/nds/

Organ Donation Myths

COMMON MYTHS ABOUT ORGAN DONATION

 

During the more than seven years that I have been an advocate for organ, eye, and tissue donation I have had an opportunity to talk with hundreds of people in different communities about organ donation and transplantation, and to encourage them to register to be organ donors. Some would readily agree to register, others promised to consider becoming donors, but a significant number of people expressed reticence based on genuine concerns about being organ donors. As I listened to their concerns I realized that most of their concerns were based on common myths associated with organ donation. This was especially true in the minority communities. For example, some believed that they were to old to be donors, or that the church did not support organ donation, or that doctors wouldn't work to save their lives if they were registered organ donors, and other beliefs mostly based on hearsay. In many cases I was able to dispel those myths, but I noted that this is one of the biggest obstacles that advocates face as we try to educate and encourage organ donation. Check out the following link for further discussion on the ten (10) most common myths about organ donation:

 

http://www.dmv.org/organ-donation-myths.php

Hepatic Encephalopathy

WRESTLING THE MONSTER

 

https://youtu.be/NQBXlrb8Xmk

 



Hepatic encephalopathy (HE) is a devastating condition in which the brain fails to function as a result of the livers inability to filter toxic substances from the blood. Poor concentration, forgetfulness, mood swings and changes in sleep patterns are just some of the affects of HE. Having been diagnosed with end-stage liver disease due to hepatitis C, I know, first hand, the struggles of living with HE. It affected my motor skills to the point that my hands would shake so severely  that I could not perform simple tasks like holding eating utensils or hitting the right buttons on my phone. Loss of short and long term memory was arguably the worst part of the experience. There were times that I could not even remember the names of my children. Even   today I find it difficult to remember significant events that occurred during the 5 years that I waited for a liver transplant. That may be a blessing in disguise to forget some of the traumatic events of that experience. The emotional, psychological, and physical affects of HE present challenges that are handled in different ways by different people, but in all cases HE reduces one to near helplessness and is a devastating and potentially deadly experience.  It was indeed one of the toughest challenges I faced while waiting for a liver transplant. Click on the link above to see stories of some who have battled the "Monster" that is Hepatic encephalopathy.

 

 



Donor Letter

LETTERS TO ORGAN DONOR FAMILIES

 

Once an organ donors family makes the decision to donate his or her organs to save lives, initial communication between the organ donor family and the recipient is handled by the transplant coordinator. The contact information of both the donor family and the recipient is confidential. The transplant coordinator, upon request, will sends letters from the recipient to the donor family and vice versa, and it is the decision of the donor family as to whether they want to begin open communication with the recipient, and it is the decision of the recipient as to they will participate in open communication. Most recipients write to their donor families thanking them for the gift of life they have been given. It is rare that they would choose not to write the donor families.  As a recipient myself, I can't imaging not having written my donor family to express my profound gratitude, still I know that some recipients have reasons for choosing not to write. Some have told me that they struggle with what to say to the donor family and, as such, may not respond, or at least, not for quite a long time. I struggled too with finding the right words to express my gratitude, but my advice to organ recipients is that if or when you decide to write a letter to your donor family, simply express what is in your heart. You can't imagine how much that will be appreciated. The following video features donor families who are heart broken because they have never received letters from the recipients of their loved one's organs to express their appreciation:

 

http://bcove.me/z6mca79l

 



Donors & Donor Families

MEETING DONOR FAMILIES

 

In most cases a person makes the decision to be an organ donor during their lifetime and usually shares that decision with their family members. Sometimes, as in my case, organ donors pass away without having made a decision about organ donation. It is then left to the donor families to make the decision as to whether to donate the organs of their loved one. Having just lost a loved one, it is a difficult time for the family as they mourn their loss. The reason that those of us who are recipients of organ transplants consider organ donor families heroes is that during their time of grief they make the compassionate decision to donate the organs of their loved ones to save the lives of complete strangers. Most of the time they never meet the recipients of their gift, but I was one of the lucky and blessed ones to have had the opportunity to meet my donor family. Shortly after recovering from my liver transplant I wrote my donor family a letter offering my condolences for their loss and expressing my profound gratitude for saving my life through their compassionate decision to donate the organs of their loved one. I gave the letter to my transplant coordinator and asked if he would see that they get the letter, since organ recipients are not able to communicate with donor families unless the donor family consents to communication. I was pleasantly surprised when, about a year after my transplant, I received a response to my letter from my organ donor's daughter. It was a beautiful letter in which she told me about her dad and how he was the kind of person who would celebrate the fact that he was able to save a life. Then, on behalf of her family, she invited me to come and meet with the family in person. It was one of the most emotional and memorable meetings of my life. There were tears as we all embraced each other, and then sat and shared a meal together. There was no way that I could fully express the depth of my gratitude for their gift and their graciousness, but I have since let them know that they are my heroes and my efforts to advocate for increased organ donation is to not only to help to save lives, but to honor them as well as all of the organ donor families who, out of compassion, make the decision to give the gift of life, often to complete strangers.  The following is a picture of my organ donor, and another of his daughters standing with me at the Veteran's Administration Transplant Lodge in Vancouver, Washington.

 

MY ORGAN DONOR

 

MY ORGAN DONOR FAMILY

 

 



Organ Donation Systems

OPT-IN or OPT-OUT: The Pros and Cons

With more than 123,000 people on the national waiting list for organ transplants in the U.S, and the number of available organs for transplantation falling far short of the increasing demand, an effort to address the problem has included serious discussions about replacing the current Opt-In system here in the U.S. with an Opt-Out system. The proponents argue that it will increase organ donation significantly pointing to the success of Spain which utilizes the Opt-Out system and currently has the highest  organ donation rate in the world. Opponents argue that presuming consent and ignoring the wishes of the organ donors family could have adverse affects and the negatives of switching to an Opt-Out system would ultimately outweigh the benefits. The following articles set forth arguments for and against an Opt-Out system:

http://www.hopkinsmedicine.org/news/media/releases/presumed_consent_not_answer_to_solving_organ_shortage_in_us_researchers_say

http://dbp.idebate.org/en/index.php/Debate:_Organ_donor_opt-out_program

http://donatelifecalifornia.org/education/faqs/presumed-consent/