Kidney Resources

This page is dedicated to you, it has information I have spent months looking for. Whether you are a kidney patient, donor or family member, this is a great place to start. However, there are not a lot of services in the Kansas area for us-except these few I found. Plus some info I found useful for everyone. Good Luck and feel free to email me with any questions!   huffman1835@yahoo.com
Be Blessed~ Kathy Huffman

 

TRIO
TRIO is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.

Email:  sleach@trioweb.org
Website http://trioweb.org

*They will help you get almost free flights for the patient, donor and caregivers using United Airlines donated miles (LIMIT:once per every 12 months).
*They have scholarships avaliable to deserving students who are transplant candidates, recipients, donors or their family members.
*TRIO can assist you in developing a support group or starting a TRIO chapter.
* Offer Mentors who provide information and answer questions.

Midwest Transplant Network

http://www.mwtn.org/
Midwest Transplant Network coordinates the procurement of vital organs, tissues and corneas in hospitals in Kansas and western and central Missouri. MTN is a federally certified not-for-profit Organ Procurement Organization (OPO) and has been committed to providing quality results in all facets of transplant and procurement services since 1973.
1035 N Emporia St # 100
Wichita, KS 67214-2943
(316) 262-6225
*Organ, tissue & cornea donation
*Donor families, recipient & decision to donate
*Funeral liason for the deceased donor organ relatives

UNOS (United Network for Organ Sharing)
As a nonprofit organization, serving the community is at the core of the UNOS mission. UNOS reaches out directly to members of the transplant community, church groups, civic organizations and the general public.
http://www.unos.org/
UNOS unites the transplant community to save lives through organ transplantation.
*Statistics up to the minute on how many organs are needed.
*The Donation & Transplantation Process
*Research, technology & education on organ donation

Transplant Living
No matter where you are in the transplant experience, Transplant Living can help prepare you. You can now choose to personalize the site to manage your health information needs.
http://transplantliving.org/
*What you should know before, during & after transplant
*facts on disease & organ allocation
*financing the transplant
*What to expect during transplant procedure & recovery
*Pediatric Transplantation
*Minorities and Transplant
*DONORS- Check with your state and see if they offer a $10,000 tax credit for donating an organ.
http://www.transplantliving.org/livingdonation/financialaspects/statetax.aspx
Kansas is one of a very few states that doesnt offer this tax credit. The bill was introduced in 2007 and again in 2009. Oklahoma offers it.

Living Donor Assistance
http://www.livingdonorassistance.org/
Providing financial assistance to those who want to donate an organ, priority is given to individuals not otherwise able to afford the travel and subsistence expenses associated with living organ donation.
To file an application for donor travel expense to the transplant center, the recipient and the donor must complete NLDAC Application Worksheets and Attestation forms. Both completed worksheets must be given to your transplant center professional (your hospital social worker)who will file an application on behalf of the donor. Eligibility is based on yearly household incomes. You must also provide documentation of your yearly household income with your application worksheet. Examples of accepted documents are: pay stubs, W-2, Federal income tax return, Social Security statement, HUD, WIC, Medicaid or other document. Do not send completed worksheets to NLDAC. NLDAC cannot accept applications from patients. If you need assistance, call 703-414-1600 or toll free at 888-870-5002.
*This helps pay for Travel, lodging, meals and incidental expenses incurred by the donor and/or accompanying person(s) as part of: Donor evaluation clinic visit or hospitalization; Hospitalization for the living donor surgical procedure; and/or Medical or surgical follow-up clinic visit or hospitalization within 90 days after the living donation procedure.

AAKP
For patients by patients.
The current board is comprised of 20 members including dialysis patients, chronic kidney disease patients, transplant recipients, healthcare professionals and members of the public concerned with kidney disease.
Email  info@aakp.org

Website http://aakp.org
*Annual convention to educate on topics for those with chronic kidney disease (CKD) to long-term dialysis and transplant recipients.
*AAKP My Health This is a complete record of your healthcare and stored in a safe, secure location that is accessible to you anywhere there’s an internet connection, at NO COST to you.
*Definitions of Chronic Kidney Disease, Dialysis & transplanting & information on all three.
*A variety of magazines & brochures on kidney health, nutrition, & how to be politically active.
*Pediatric info on kidney disease.

MAYO CLINIC
The Mayo Clinic Kidney Transplant Program is among the largest in the country, performing hundreds of kidney transplants each year. Mayo Clinic in Rochester, Minn., ranks No. 1 for Kidney Disorders in the U.S. News & World Report Best Hospitals rankings.
http://mayoclinic.com
*The very best healthcare website with current information on every healthcare issue.
*A very professional, organized staff of doctors, nurses and social workers.
* In depth review of the process of transplanting, statistics, resources, donor information & patient stories.
*Gift of Life Transplant House in Rochester is a very home like environment and $25 per night + $25 one time cleaning fee, no matter how long you stay. Always needing donations of toiletries, books or dvds. You must tour it before you can stay there. Very loving all volunteer staff. No smoking, and no one under 18yrs old unless the child is the patient.
* I highly recommend Mayo Clinic to everyone. They have a system that works, it doesnt take months to get appts, and the docs are all on the same computer system, so there is no confusion, no running after charts, records, films or lab.

 

 

After transplant, stay away from Seville oranges, pomegranate & grapefruit (including Fresca soda pop) These three things have shown in Mayo Clinic studies to make the immuno-suppressents not work. Not all transplant centers will tell you this.

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