Although Kennedy is not going back to school for a few months while we figure out how to keep her suppression high enough to prevent rejection, but low enough to keep off EBV and other colds and viruses, we are grateful that she is feeling good eight months post-transplant!

Here’s a picture of all the kiddos that we are so thankful for   

As we wrap up Alpha-1 Awareness Month, we wanted to share some important reminders. 

Alpha-1 has been identified in virtually all populations. An estimated 19 million people in the US have one normal and one defective Alpha-1 gene. This means that there are many carriers out there, like us, who had no idea they had a defective gene because their family had no known history of being affected by the condition. 

Alpha-1 is not included in genetic testing many women get when preparing for pregnancy, and is not included in the newborn screening test either. Ask your physician about getting tested if you have any family history of liver or lung-related illnesses. Check out the Alpha 1 Foundation website for more information and to find out about free testing.

What are common symptoms or signs of Alpha-1?

Lung-related symptoms include shortness of breath, wheezing, chronic bronchitis, recurring chest colds, less exercise tolerance, year-round allergies, bronchiectasis. 

Liver-related symptoms include unexplained liver disease, elevated liver enzymes, eyes/skin turning yellow, swelling in the abdomen, enlarged veins in the esophagus or stomach. 

Who should get tested?:

-Anyone who has COPD (emphysema and/or chronic bronchitis) 

-People who have unexplained chronic liver disease

-People who have necrotizing panniculitis, granulomatosis with polyangiitis, or unexplained bronchiectasis

-Parents, siblings, and children, as well as extended family members, of people who have been identified with an abnormal gene for Alpha-1

Thanks for all of the love and support you have given to our family and our little warriors!