Fwd: [TRANSACTION] an e-newsletter for transplant recipients

[Guest guest]

This newsletter is from the National Kidney Foundation. Many of the programs also apply to liver transplant.See what's free at AOL.com.

Table of

Contents

I. Family Reunions: Talking About the Diabetes - High Blood

Pressure - Kidney Disease Connection!

II. <?xml:namespace prefix = st1 ns =

" urn:schemas-microsoft-com:office:smarttags " />Gallup Poll Results about Organ

and Tissue Donation

III. Getting Involved in Public Policy and Legislation

IV. The Power of Sharing Stories

V. A New Television Series about Transplantation

VI. The National Donor Recognition Ceremony and Workshops

VII. Did you Develop Diabetes After Your Transplant?

VIII. Financial Resources

IX. Good Nutrition

<?xml:namespace prefix = w ns = " urn:schemas-microsoft-com:office:word " />I.

Family Reunions: The National Kidney Disease Education Program (NKDEP) is

starting activities for the third year of the Family Reunion Initiative, which

encourages African Americans to use reunions as an opportunity to talk

to family members about the connection between diabetes, high blood pressure,

and kidney disease. A free Family Reunion Health Guide provides

everything family members need to share important kidney health information at

their reunions. Download it from the NKDEP's Family Reunion website (

www.nkdep.nih.gov/familyreunion or order at no cost. Tamra , the

Chairwoman of NKF " s transAction Council knows the value of such conversations.

She listened to a cousin describing her symptoms at her family reunion and

realized that she too had these symptoms and sought help.

II. The New Gallup Poll on Organ and Tissue Donation collected in 2005 and

released in 2007 is available from the

HRSA News Room website at: http://newsroom.hrsa.gov/ and can be downloaded from

the Division of Transplantation's website at:

http://organdonor.gov/survey2005/

III. Getting Involved in Public Policy and Legislation

Join NKF's " People Like Us! " http://www.kidney.org/patients/plu/index.cfm a

growing movement to empower educate and enable 1) people with chronic

kidney disease (CKD), 2) transplant recipients, 3) donors and 4) family members

to become effective advocates on issues related to their health and

well-being. Sign up for NKF " s Legislative Action Network at

http://capwiz.com/kidney/mlm/signup/?ignore_cookie=1 Once you have signed up,

NKF will

send an e-mail when your voice can make the biggest difference on our

legislative priorities. These action alerts will include a sample letter you

can personalize and with a click of your mouse send to your congressional

representatives urging them to act. Call NKF at if you have

questions.

The US Department of Health and Human Services, Health Resources and Services

Administration on April 9, 07 published a request for public comments

about reimbursement of travel and subsistence expenses toward living organ

donation proposed eligibility guidelines. Your comments are due on May 24.

visit www.wais.access.gpo.gov to read the summary of the program and how to

submit your comments. Your comments will help determine how travel and

subsistence grants for living donors can be awarded.

The United Network for Organ Sharing (UNOS) continues to study how to make the

allocation of deceased donor kidneys as fair and equitable as possible.

Stay tuned! Two members of UNOS's Kidney Pancrease Committee will be inviting

donor families, living donors, recipients and candidates to listen to a

telephone presentation about allocation issues and survey your opinions. More

information will be e-mailed to you as it becomes available.

IV. The Power of Sharing Stories: Your transplant journey can be a source of

education and encouragement for others. For you, telling your own story

can be a source of personal growth and pride. More and more, people are turning

to blogs to tell a story. To start a blog, you can post your own

journal of free host sites such as google's blogger.com or yahoo's 360.yahoo.com

Then, you can provide a link to it from the transplant recipients

message board at http://www.kidney.org/fusetalk/forum/index.cfm?forumid=5

In addition, we can post your story on the transaction Web site:

http://www.kidney.org/transplantation/transAction/shareStories.cfm

If you are interested in telling your story in front of an audience, here is a

booklet about being an Ambassador for Organ and Tissue Donation written

for donor families and recipients:

http://www.kidney.org/transplantation/donorFamilies/infoPromote.cfm

V. A New Television Program about transplant: TNT Network Television has

announced a new series titled " heart land " to premiere in June.

http://www.tnt.tv/title/?oid=100155T Treat stars as an over-worked

organ transplant surgeon who battles the clock to save lives.

Heartland premieres Monday June 11 at 10/9c on TNT. Being " entertainment " it

may be full of inaccuracies.some may decide to watch, some may not!

VI. The National Donor Recognition Ceremony and Workshop (NDRCW), the 10th

Federal Government ceremony to honor the Nation's living and deceased

donors, will take place in Washington, DC on July 20-22, 2007. Transplant

Recipients are invited to the Ceremony on Sunday July 22 - admittance is

free! This event is sponsored by the Division of Transplantation, Health

Resources and Services Administration, U.S. Department of Health and Human

Services with the assistance of the National Kidney Foundation's (NKF)

National Donor Family Council and many other transplant associations and

organizations. Revised as of April 4, 2007: The phone numbers for the

Renaissance Washington DC Hotel have been corrected in this document. (Some

copies of the booklet may have incorrect numbers-- please use the numbers listed

in this document). Download the revised version.

VII. Did you develop diabetes after your transplant?

" New Onset Diabetes: A guide for Kidney Transplant Recipients "

http://www.kidney.org/transplantation/transAction/resources.cfm

VIII. Financial Resources: For example, are you taking Neoral, Sandimmune or

myfortic to keep your Kidney? Novartis, the manufacturer has a Patient

assistance program to help recipients afford the cost. To find out if you

qualify call 1-. If you are taking other medications and want

to find out if there are programs to help you afford the cost, visit:

www.needymeds.org and www.medlineplus.gov and also www.pparx.org This

is a sample of the information available on transAction's Financial Resource

page on-line at:

http://www.kidney.org/transplantation/transAction/resourcesFinancial.cfm For

example, you can read the entire, Taking Control: Money Matters For

People With Chronic Kidney Disease, published 2005 by National Endowment for

Financial Education and the National Kidney Foundation #01-10-0250 72

page book organized by topic and chapter. Perhaps these chapters will help you.

You can also call and request a free copy from the

Information Specialist who answers your call.

Chapter 1: Understanding Costs (PDF* 2.4MB)

Chapter 2: Keeping Health Insurance Coverage (PDF* 3.5MB)

Chapter 3: What Medicare, Medicgap, Medicaid and Medicare Savings Programs Can

Pay for (PDF* 5.4MB)

Chapter 4: How Social Security Can Help (PDF* 1MB)

Chapter 5: More Sources of Financial Help (PDF* 4MB)

Chapter 6: Definitely Yes! Going to School, Working and Traveling (PDF* 4MB)

Chapter 7: A Summary of Helpful Programs and Financial Resources (PDF* 3.5MB)

Are you a young person with a transplant? Between the ages of 1-30 years old?

We would love to hear from you! Submit your story

http://www.kidney.org/transplantation/transAction/shareStories.cfm and vist our

message board for teens at

http://www.kidney.org/fusetalk/forum/index.cfm?forumid=5 and help others.

IX. Eating and Feeling Well

Good nutrition is the key to good mental and physical health. Eating a balanced

diet is an important aspect of good health for everyone. The kind and

amount of food you eat affects the way you feel and how your body works.

http://www.kidney.org//atoz/atozTopic.cfm?topic=4. Proper nutrition is

essential in helping patients feel well and avoid problems linked to poor food

choices, such as weight gain. It is important to work in concert with

your physician and dietitian on a healthful diet, http://www.niddk.nih.gov/.

Each archived Transplant Chronicles newsletter at

http://www.kidney.org/transplantation/transAction/chronicles.cfm has an article

written by a

Registered Dietician.

Send comments, suggestions to transactioncouncil@...