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"When the tool of science meets the mystery of faith the greatest medicine is formed -- hope."
Doogie Howser
"Science goes so far and then God steps in."
from The Notebook
"Smart, savy patients are not born, they are made."
Amy Silverstein
Websites with helpful informantion:
• Little Hearts
• Ped Hearts
• Surgical Technologist
• A Minute Of Health
• American Transplant Foundation
• American Transplant Association
• TransWeb
• National Kidney Foundation
• Lifelink of Georgia
• United Network of Organ Sharing
• Ananda Ranch
• International Society for Heart and Lung Transplantation
• The Transplantation Society
• Health Resources and Services Administration
• US Department of Health and Human Services
• Scientific Registry of Transplant Recipients
• Donate Life America
• Organ Procurement and Transplantation Network
• MyHealthExperience
• Wellsphere.com
• Children's Healthcare of Atlanta at Egleston
• Georgia Transplant Foundation
• James Redford Films
• American Heart Association
• Transplant Buddies
• Mended Hearts
• OrganDonor
• Make-A-Wish
• The Southeast Pediatric Cardiovascular Society
• Congenital Heart Information Network
• The Children's Heart Society
• Gift of Life Foundation
• Hearts of Promise
• Triathlons for Transplants
• Hope for HLHS
• Shari Maurer
• Transplant Recipient International Organization
• It's My Heart
• The Children's Heart Foundation
• Adult Congenital Heart Association
• Children and Clinical Studies
• Healthpassport
• Angel Cove Transplant Blog
• Transplant Cafe
• My Med Schedule
• Congenital Heart Defects
• Transplant Talk Radio
• Got Transition
Yahoo Groups:
Transplant_Friends
New Hearts
Heart Transplants
Heart_Beats
I'm available to speak about heart transplants and organ donation. Contact me for more information.
Katie Beckett Waiver: Families with a higher income may want to consider the Katie Beckett Waiver. The Katie Beckett Waiver was designed to help families get Medicaid when the parents' income is too high to qualify for Supplemental Security Income (SSI). To apply for the waiver call your Social Security Office. You must be rejected for SSI before applying for the Katie Beckett Wavier. You will need a letter stating the benefits were denied. Then contact your county's Department of Family and Children Services (DFCS) Medicaid worker to apply. You will need to make an appointment and it may take up to two or three hours to fill out the applications. They are long and intrusive.
Take the following with you when you go: Proof of income, check stubs, name and address, phone numbers of all physicians who have examined your child, bank account numbers and safety deposit numbers, information on assets such as cars, boats, house, child's birth certificate and social security number, and rejection letter for SSI benefits. Ask the doctor who knows your child best to sign the DMA 6 and the physician referral form. You sign the form also. You need to get this information to DFCS as soon as possible. Stay in contact with DFCS to see about the status of your application. Speak to your Social Worker about this waiver. They can help.
You also need to check and see if there is any state run programs for children with special medical needs. They can be of assistance. Please do not assume that your medical care personnel are telling you everything. They may not know everything that is available and/or may not think you will qualify. It never hurts to try. Being turned down is better than missing out on help. I hope these resources have been useful.
Articles by Susan
Life With A Chronically Ill Child
Mortality Resulting From Congenital Heart Disease Amoung Children and Aduts in the US, 1999-2006
Congential heart disease is structural problems with the heart present at birth.
* Most common birth defect
*Approximately 35,000 babies born with a defect each year
*About 1,000,000 Americans have a congenital heart defect
*The number one cause of death form birth defects during the first year of life
*The estimated cost of caring for patients with congenital heart disease exceeds 2.2 billion dollars
*Over 91,000 life years are lost each year in the US due to congenital heart disease as die from all forms of childhood cancer
*Funding for congenital heart disease research is 5 times less than funding for pediatric cancer research
Because there was virtually nothing to read for families going through what we went through, I am including some information that may be useful. This includes books, publications, resources and general information. Please ask your health care providers and social workers for any up dated help or ideas. These are just to get you started.
I have personally read these books and can recommend them. They should help you have a better insight into your situation.
Books:
Gerri Freid Kramer and Shari Maurer
The Parent's Guide to Children's Congenital Heart Defects, What they are, How to Treat Them, How to Cope with Them
Every Second Counts: The Race to Transplant the First Human Heart
Dowie, Mark
We Have a Donor
Chronimed
The Bold New World of Organ Transplanting
Gutkind, Lee
The World of Organ transplantation
Many Sleepless Nights
This book is rather complicated but gives an over all background of transplantation in general. This is not a book for easy reading or for those just receiving a transplant.
Finn, Robert
Organ Transplants
This book is a general overall guide to the world of transplantation. It shares people's different experiences with their different organ transplants.
Frist, William H., M.D.
Transplant, A heart surgeon's account of the life and death dramas of the new medicine
This book I highly recommend because it is a warm, easy reading book. It also gives a lot of information and the general process of transplantation.
Grizzard, Lewis
I Took a Lickin' and Kept on Tickin'
This is Lewis Grizzard humorous way of sharing his experiences with heart trouble. He shares why anyone with heart trouble should take care of themselves. He also takes a humorous look at hospitals and medical personal. Sometimes very much needed.
Hansel, Tim
You Gotta Keep Dancin' In the Midst of Life's Hurts, You Can Choose Joy!
This book is about a young man who has major physical problems but chooses not to dwell on them, but on what he can do for others and how to best live his life. If you are feeling down this could be an up lifting read.
Berends, Polly
Whole Child/Whole Parent:
A spiritual and practical guide to parenthood
Briggs, Dorothy C.
Your Child's Self-Esteem: The key to his life
Kusher, Harold S.
When Bad Things Happen to Good People
Powell, Thomas and Ogle, Peggy
Brother and Sisters:
A special part of exceptional families
Fund Raising Groups:
COTA Children's Organ Transplant Association
2501 West COTA Drive
Bloomington, IN 47401
(800) 366-2682
www.cota.org
National Heart Assist And Transplant Fund
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087
(808) 642-8399
www.transplantfund.org
National Foundation for Transplants
5350 Polar Avenue, Suite 430
Memphis, TN 38119
(800) 489-3863
www.transplants.org
NORD National Organization of Rare Disorders
55 Kenosia
PO Box 1968
Danbury, CT 06813
(203) 744-0100
www.rarediseases.org
Helpful Resource Groups:
Federation for Children with Special Needs
1135 Tremont Street, Suite 420
Boston, MS 02120
(800) 331-0688
www.fcsn.org
The Starlight Starbright Children's Foundation
5757 Wilshire Boulevard, Suite M100
Los Angeles, CA 90036
(310) 479-1212
www.starlight.org
Roche Pharmaceuticals
340 Kingsland Street
Nutley, New jersey 07110
(973) 235-5000
www.rocheusa.com
Free transplant library
They have numerous resources for learning about transplants including videos, books and booklets
Free Reading Resources:
Parents helping Parents, Inc.
3041 Olcott Street
Santa Clara, CA 95054
(408)727-5775
www.php.com
Patient Rights
- Receive considerate and respectful care.
- Obtain complete information on illness and treatment.
- Participate in treatment decisions.
- Give informed consent.
- Refuse any treatment.
- Receive reasonable medical care and skill.
- Wait only a reasonable amount of time.
- Have your records kept confidential.
- Get copies of requested records.
- Have an advocate with you.
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