Sue Smith

Hi, my name is Sue Smith, and I am honored to introduce myself as your AlphaNet Patient Services Coordinator.

My husband, cat, and I live in Painesville, Ohio, close enough to Lake Erie to see beautiful sunsets most every evening. We have four grown children and one granddaughter who all own dogs, cats, and hermit crabs. Because they live all around the country, we get to visit some great places.

My background is in teaching and I taught both fourth grade and special education for about 19 years. The last two years of teaching became increasingly more difficult because of my continual coughing and exhaustion. I had pneumonia several times. Like many Alphas, I couldn’t figure out why I felt so dragged out. I coughed so much that my granddaughter called me “Grammy Cough.”

In 1998, I was rushed by ambulance to the ER thinking I might be having a heart attack. Many hours and many tests later, a pulmonologist talked to me about having a condition called Alpha-1. He described how I got it and told me there was no cure. He recommended I talk to an expert in the field who finally had a detailed explanation for my years of lung issues and illnesses. He also told me about Prolastin®.

Soon after that, I received a phone call from an AlphaNet Coordinator who explained, educated, and connected me with resources. She listened, encouraged and soothed me throughout my journey with A1AD. She also became a friend. I learned there was help for me from a large group of people with whom I had a lot in common ~ other Alphas. All my concerns were finally validated.

I had a double lung transplant in 2004, and have been blessed with health and energy ever since. I cannot ever quite get the words right to thank God, my husband, family, friends, doctors, and all the Alphas who have been incredibly supportive of me. It is now my turn to be an Alpha helping other Alphas.

I will call you at least once a month to discuss current topics that may affect your Alpha-1. AlphaNet has a wonderful Disease Management Program that you may find beneficial. Because it is so reader-friendly and chock full of information, great lifestyle tips and medical facts, we’ve named it the Big Fat Reference Guide. You can also find it on our website at www.alphanet.org. If you don’t have access to a computer, just give me a call.

I have been privileged to learn so much from my years of regular contact with so many other Alphas. Please know that you can call me or e-mail me anytime with any question you have about Alpha-1 Antitrypsin Deficiency. If I don’t know the answer, I can find it for you or get you to a person who does have the answer, like one of our specially trained RNs or nationally renown (but totally accessible) Medical Director, Dr. Robert “Sandy” Sandhaus. You can also contact me about your Prolastin® therapy, medical supplies or insurance issues, because I work with the professionals at our pharmacy everyday.

Occasionally, we feel as though no one knows what we are going through with Alpha-1. Sometimes we just need the comfort of talking to someone who does. So, if there is an occasion when you have a question or an issue you want to discuss, please call me.