Alpha-1 Advocacy Alliance - Emotional Support

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Testing for AAT Deficiency
Simply click HERE Alpha One International Registry
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

Group Therapy for
The Alpha-1 Patients and Family

When Saying “NO” to a transplant,
medical procedure,
or medication is the right decision for you.

        From the very start of the pre-transplant process up to and actually including the call for a transplant some people decide transplant is not for them. First, let's look at why some patients decide not to have an organ transplant. Second, we will look at why some don't have other medical procedures. And, finally, we will look at why some people decide not to take medication. Here are some stages of change that may one make think about in the decision making process. The following are some steps in making medical decisions.

1. Find out all the medical facts

Find out as much as possible about your disease.

Are there tests needed to know more?

What is the purpose of the test and is there any risk in taking the test.

This information will help you understand the likely course of your disease.

2. Find out the options

How will other possible options improve or make you feel better.

Can the procedure be done on a trial basis first?

What defines success for this option? Is there a success rate for people like you?

What are the possible side effects?

3. Decide based on what is best for you.

Don't feel guilty if you do not decide on any particular course of treatment at this time.

4. Don't hesitate to ask questions about any of the following:

What will this surgery, treatment or medication do?

What will happen without surgery, treatment or medication?

What are the side effects?

How long will it take?

Is it covered by insurance?

if your doctor recommends a lung transplant there are things that you need to know about the transplant process, the surgery itself, potential risk and follow-up care.
5. To consider a transplant you should be in the advanced stages of your lung disease. The evaluation process may include the following requirements.

Have a medical condition that could benefit from a transplant.

Aren't likely to benefit from other treatments.

Are healthy enough to undergo surgery and post-transplant treatments.

Don't have medical problems that could complicate the surgical procedure or otherwise shorten your life span.

A lung transplant candidate must agree to stop smoking, if they smoke.

Are willing are able to follow the medical program outlined by the transplant team.

Have sufficient emotional strength and support to undergo the wait for the donor organ and have a network of family and friends to help you during this stressful time.

As you can see, there is a lot to think about when considering the transplant process.

        Even after being placed on a transplant list some of the things you will be required to do may make it so you decide not to go through with the transplant. More than likely you will be placed in physical rehab prior to the transplant to build your physical stamina and maintain your emotional well-being. There have been cases where individuals have become so physical fit over a period of time to the point that they are no longer considering transplant.

Another option if upon an evaluation it is determined that you are a candidate, due to the damaged lung tissue expansion in the chest cavity might be a surgical procedure called a Lung Volume Reduction Surgery (LVRS). The removal of part of a lung can make it easier to breathe. Therefore, the individual can be more active including work and play for sometime. Of course, as it is with any surgical procedure there are risks and you must weigh the benefit versus the cost in deciding whether to go ahead.

        Individuals whom have been treated effectively with medications and breathing-assistance devices for their lung disease for sometime may be hesitant to take the next step to have a transplant, because of the cost and side effects of some of the medications you will be put on. Not all lung-disease is immediately life-threatening, even for those with Alpha 1.

        For some individuals the cost of the procedure or the follow-up medication requirements and care may be prohibitive. Whether this is real or imagined due to the persons fears cannot always be determined. There may be other resources available to help, if the individual really wants to explore other financial options.

        Whatever your decision, stop doubting yourself and get on with your life. Make the most of today without guilt or regrets. You know the old Joke about why we call today a present. Because in essence today (the present) is all we have, tomorrow may never come and yesterday is already gone.

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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