Post 9

I guess you have to talk about the bad days too. Well today is one. I am stuck on the couch basically. My blood pressure is 76/51. I cannot stand up without being very lightheaded and having to go down on my knees. I am short of breath but not that bad. I have chest pain. I am drinking lots of water; which also makes me have to stand up, go down on my knees and head for the bathroom. The good news….. I have a great book to read. And its my husband’s day home and he can pick our son up from school. No driving today. Tomorrow will be better.

*disclaimer*
The author is a heart failure patient going through the transplant listing process. She also is a nurse and former hospital administrator. She would like to thank Donate Life Northwest for permitting her to post her observations on the Donate Life Northwest website. She also wants to emphasize that all opinions and views stated in the posts are her own and not those of Donate Life Northwest.

Donate Life America, in partnership with Astellas Pharma US, Inc., commissioned an online survey of 5,100 adults in the United States. Fielded by Survey Sampling International in January 2010, and compared to the February 2009 survey, findings revealed both positive signs as well as barriers among the public.

Signs of Hope

• A majority of U.S. adults now wish to be organ or tissue donors –56 percent versus 50 percent in 2009.
• Among adults who have registered to be organ or tissue donors, 19 percent were previously reluctant or hesitant to do so.
• Three-fourths (75 percent) of those surveyed want their donation wishes fulfilled regardless of family desires, up from 2009.
• The percentage of adults who believe the organ and tissue allocation system is fair has increased in the past year – 37 percent versus 32 percent in 2009.

Challenges Ahead

• 52 percent of people incorrectly believe that doctors may not try as hard to save their lives if they know they wish to be organ or tissue donors.
• 19 percent of people are not sure they would be acceptable donors.
• Approximately half of adults (48 percent) believe a black market exists in the U.S. for organs and tissue, up from 44 percent in 2009.
• While only 16 percent believe a regular funeral is not possible following donation, this percentage is up from 13 percent in 2009 and 1 percent in 2004.
• 61 percent mistakenly believe it may be possible for a brain dead person to recover from his or her injuries.
• Despite the strong desire for first person consent, many barriers, including lack of urgency, exist regarding registration. 27 percent “just haven’t done it” or “gotten to it.”
• Among adults who wish to donate all or some of their organs or tissue but have not registered to do so, just over half (53 percent) say they do not know how to register, while another 25 percent are neutral.

With this knowledge we see that we have come very far, but  we still have a long way to go. We are more determined than ever to continue to educate and enroll the Pacific Northwest into our state donor registries and  bring new life and new hope to patient’s in need.

According to a new survey by Donate Life America, 43 percent of people are undecided, reluctant or do not wish to have their organs and tissue donated after their deaths.  This number still sounds high to me, but it is an improvement over findings from last year where 50 percent reported the same.   This statistic shows the critical need to continue to increase the level of support for organ donation to save the lives of the more than 105,000 adults and children on the transplant waiting list in the U.S., an average 18 of whom die each day waiting.

Locally we have increased our registered donors by 2% over last year which is great news! However, the need has also increased at a rapid rate as well.

Locally have 645 people on the organ waiting list

• 500 people are waiting for a kidney transplant
• 124 people are waiting for a liver transplant
• 1 person is waiting for a pancreas transplant
• 8 people are waiting for a combined kidney/pancreas transplant
• 12 people are waiting for a heart transplant

After reading the most recent National Donor Designation Report Card, I am reminded that tremendous strides have been made in transplantation. Did you know that in the early days only siblings (specifically twins) could donate? Today, deceased and living donation among strangers is the norm. Our age criterion has been extended with donors as old as 92 on record! And donation after cardiac death (as opposed to brain death) is sometimes possible which expands the number of organs that can be donated.

The National Donor Designation Report Card states, “Still, with the miraculous success of transplantation, the need for donors continues to increase. In order to meet this need, it is essential that millions of people step forward to register as donors, and that the thousands of people who are asked to make the decision for their loved ones say ‘yes’ to donation.”

So with that, let’s continue to celebrate the great advancements we’ve made and push ourselves to go the next mile until we can meet the local needs of our 645 people and hit that national goal of registering 100 million designated donors!

It is a cause very close to my heart. My daughter Brooke was diagnosed with a rare liver disease when she was just two months old. Six months later, when doctors believed she just had only days to live, she received her donated liver.

Brooke is now 15 and my family is so lucky for her transplant. We will be forever grateful for her donor’s lifesaving decision to help Brooke.

It really is amazing to think of how many people one person can help just by taking five minutes to sign up on the donor registry. One person can save eight lives through organ donation. That same person can enhance up to 50 more lives through tissue donation. And it is nearly impossible to count the number of individuals affected when their loved one get’s the transplant they have been waiting for.

It’s sad to think about the 2,500 sons, daughters, fathers, mothers and loved ones still waiting for a transplant in the Pacific Northwest. The key to saving lives starts with Donate Life Northwest’s lifesaving education programs which motivate people to sign up as donors.

This holiday, I encourage all you bloggers and supporters to make a financial gift to Donate Life Northwest. As we all know, it takes just one person, one gift, to make a difference.

Safe and happy holidays to you all.

Rodney Whitaker

Donate Life Northwest Board Member

Transplant Recipient Father

Topics will cover a broad range of donation and transplant news and issues, as well as occasional news about Donate Life Northwest projects and programs. Conversations are intended to be engaging and educational and to reflect our goal of increasing the number of registered donors.  Diverse perspectives and opinions stated thoughtfully and respectfully will offer an opportunity for lively and healthy debate.

We dedicate this blog to honor donors and their families, to celebrate the renewed lives of transplant recipients, and to offer hope and support to those whose lives are on hold waiting for a transplant.

Last but not least, we add the NPR disclaimer: not all opinions expressed on this blog are those of Donate Life Northwest.

Come have fun and interesting conversations with us. See you in a week.