Alpha-1 Advocacy Alliance - Emotional Support

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Testing for AAT Deficiency
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provides AAT Deficiency Testing. This AAT Deficiency Testing is a
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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

Group Therapy for
The Alpha-1 Patients and Family
"The National Waiting List"

        Even though there are now many ways to make transplants successful for recipients, the number of persons willing to become organ donors has not improved. Since there are just not enough organs available for those who are waiting, (those patients who need an organ transplant and are dependent on an organ from a deceased donor) it is important to remember the following:

There is no way to know how long you will be waiting for the necessary organ,

Talk with your transplant team about the waiting period,

And, remember that the Health and Human Services (HHS), United Network of Organ Sharing (UNOS), Organ Procurement Organization (OPO's) and many other groups are working to increase the number of organs available.


        The National Waiting List is kept on the UNOS computer, which stores and accesses the information for donor matching. Once you have been evaluated by the transplant team and accepted on their waiting list they send the information on to UNOS. Once an organ is donated, a list of potential recipients who match the organ type is produced by the data stored in this computer. UNOS is located in Richmond Virginia, but serves the whole United States. UNOS operates 24 hours a day, 7 days a week. You can access the data at www.uno.org/data

        There of course is a priority based on certain criteria the potential candidates must meet. The final list produced shows the best possible matches for that organ. The rules and allocations policies that govern how potential recipients are ranked on the waiting list are developed by patients and transplant professionals to make sure that every patient on the waiting list has a fair and equal chance at receiving the best organ, at the best time for a particular patient's condition.

        Criteria that determine allocation depend on the organ to be transplanted. In the case of Lung and Liver transplants, medical urgency, size of donated organ, blood type and/or Body Mass Index (BMI) are factors. To help you understand, think about the size of lungs inside a man six feet tall. Those lungs would be too large for a man or woman five feet in height. The same could be for a liver, too large for a small person. Also another factor to be considered is the life expectancy of an organ once removed from the donor and distance to recipient. Preservation time for lungs is 4 to 6 hours and livers are 12-24 hours. Criteria that are not used in the computer matching system are gender, religion, celebrity and financial status.

        What do you do while waiting on the list can be an important factor to how well you will come through the transplant experience. You will be required to participate in a pulmonary rehab program if you are a lung candidate. All others will be encouraged to exercise. Staying as physically active as possible will aid in your recovery. Even if you become weak or bedridden, you should try to breathe deeply, tighten and relax your muscles, stretch and lift your arms and legs. You might even use a soup can as a counter weight to keep muscles strong. Probably, the most important exercise if possible is to walk! walk!, walk!

        During the wait time on the list you maybe asked to carry a beeper so the hospital can contact you quickly once a suitable organ has been located. By carrying a beeper or cell phone you are not restricted to home. Once you are offered the organ, your transplant center only has one hour to accept or turn it down. If you are not available the next possible recipient will be offered the organ.

        So now let's talk about what happens when the organ becomes available. When your transplant center or transplant coordinator calls you there are a series of questions they will ask you to determine if you have signs of an infection. They are do you have a cough, a fever, or a burning sensation when you urinate? If you have none of these symptoms, therefore meeting the criteria for a suitable transplant candidate, you will be asked to go to the hospital to prepare for surgery. Believe me it is best to have a plan about who will drive you and even a back up plan so you can stay as calm as possible. All these plans should be made far in advance.

Here are some recommendations to be ready for the transplant.

Always keep your transplant team's phone numbers with you,

Don't hesitant to ask questions,

Ask the transplant team when to start carrying a beeper and change the battery monthly,

To reduce chances of catching a cold, flu are any type of infection,

Try to avoid crowds during cold and flu season,

Don't share eating utensils or drinking glasses,

Avoid sick children,

Ask family and friends not to visit if they are sick,

Ask team about taking care of your pets,

Use antibacterial cleaning solutions, and

Do not share cosmetics or nail files even Nail Salons.

Have laboratory tests done even if feeling well,

Pack your suitcase so it is ready for when you get the call,

Basic things needed include: robe, slippers, reading glasses, toothbrush, toothpaste, deodorant, razor, shampoo, hairbrush, socks and underwear.

Other things include: your own pillow, loose clothing (sweat suit), CD player and music, extra batteries, books, magazines, photos, paper and pens, long distance calling card, telephone numbers and any spiritual material you might find helpful.

If a family member is accompanying you and it is some distance they should also pack a bag.

        Of course you will want to know where you stand on the waiting list and UNOS staff cannot provide this information. The patient should discuss this with their transplant team. According to UNOS policy the following should occur:

The transplant program must notify the patient in writing within 10 business days (Monday thru Friday or business days), of placement on a waiting list.

The transplant program must notify the patient in writing within 10 business days that they will not be placed on a waiting list.

Once listed, if the patient is removed from the transplant waiting list for any reason other than transplantation or death, the transplant program must notify the patient within 10 days that they have been removed.

This policy is intended to improve communication between transplant centers and their patients and help patients better understand the listing and transplant process.

        Next month we cover the “Organ Matching Process,” what does it mean “Brain Death,” “Organ Sharing” and “Other Factors That Affect Waiting Times.”

Disclaimer: The information presented on Ask Pat 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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