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Joining is free, easy and private. to sign up and become a member of our growing community of committed individuals striving to be well informed and educated about Alpha 1. Read our Privacy Policy and be assured we are here to help. Let us know what we can do for YOU! |
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Simply click HERE provides AAT Deficiency Testing. This AAT Deficiency Testing is a COMPLETE CONFIDENCIAL TESTING SERVICE and WITHOUT COST TO YOU. This testing will include measuring the CONCENTRATION of AAT in your blood, determining the TYPE of ATT in your blood and (where appropriate) determining your AAT genotype by testing the DNA in your blood; State of the art, full-spectrum Alpha-1 Testing . Please read the detail at: AAT Deficiency Detection Center |
  The Alpha-1 Patients and Family Transplant Team It is important that you are comfortable with the Transplant Team and the Transplant Center you select for you transplant experience. As a patient and transplant candidate you are an important member of the team. As a member of the team, you should know the members of the team and be comfortable enough to talk to them and ask questions. Other members of the team can include, Transplant Coordinator, Transplant Surgeon, Transplant Physician, Transplant Unit Staff Nurse, Financial Coordinator, and Social Worker. Your family doctor, specialist or primary care physician can coordinate medical care with the transplant team, especially, if you have to travel long distances to the transplant center. The following is a series of questions taken from “Partnering With Your Transplant Team” by the Health Resources and Services Administration (HRSA) you may want to ask the transplant team.
Organ Procurement Organizations Every transplant center in the US is a member of the Organ Procurement and Transplant Network (OPTN). The transplant center must meet specific requirements that promote safe and effective transplants. There must be a transplant surgeon and transplant physician with extensive training and experience in the type of transplantation for each type of organ the center does. Figures reported by in 2005 show that there are 68 lung and 124 liver transplants programs in 256 transplant centers. OPTN are made up of organ procurement organizations (OPO) which are the link between the recovering the organ from the donor and the organ recipient. There are 58 OPO's and they provide services to transplant programs in its area (this can be a large city, a whole state, or a region.) Their second function is to educate hospital staff and the general public about the need for organ tissue donation. The OPO's hire organ recovery coordinators that are highly trained professionals and their function includes:
The decision as to where organs go can also depend on preservation time of the organ. Organ Preservation Times
Support Groups and Other Contacts Various organizations and support groups offer many different services including patient education materials (American Lung Association and American Liver Foundation), patient advocacy (OPTN and Second Wind Transplant Association and Alpha 1 Advocacy Alliance, as well as charitable support (Angel Flight and Partnership for Prescription Assistance) for patients and their families. Some of these agencies are non-profit voluntary health organizations, for profit companies and government agencies. Many of these groups may help you explore other funding sources. Why Join a Support Group? The support group members who have walked in your shoes will be able to help alleviate some of your fears and concerns. This is a place where you can release your pent-up emotions and anxiety. It is always helpful to see others who have a transplant enjoying a better life. Groups share helpful information about new medications, insurance issues, stress relief and the latest trends in transplantation. Support groups can be found in the hospital transplant center, even local transplant patient groups who meet usually monthly, professional organizations such as local OPO's, internet support groups (such as Alpha1 Advocacy Alliance) and telephone networking (your transplant center may put in touch with other patients in similar situations). Next month we will talk about “The National Waiting List”, “Waiting for a Transplant”, what happens “When an Organ Becomes Available” and treatment “Options” at that time. Disclaimer: The information presented on askpat@alpha1advocacy.org is not intended to be a substitute for professional medical advice or to replace your relationship with a physician. For all medical concerns, you should always consult your doctor.
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