Judy Tretsven-Parker's Story

Alpha-1 May Slow, But Doesn’t Stop Judy Tretsven-Parker from Living a Full Life—and Teaching Others About Her Illness

Judy Tretsven-Parker manages her alpha-1 antitrypsin disorder with therapies derived from plasma.

Can you tell us about your A1AD?
A1AD is an inherited (passed down from parents) disorder that causes low levels or no alpha-1 antitrypsin protein in the blood. I suffer from the most severe type of A1AD, called “type ZZ.” People with type ZZ generally have only about 10 percent of the normal amount of alpha-1 antitrypsin in their blood. In short, the deficiency in those of us that are genetic type ZZ cannot produce the protein to protect our lungs. The air and pollutants we breathe eat away at our lungs until we die. If left untreated, and without living a very guarded life, patients only survive into their mid-40’s. A1AD is otherwise described as genetic emphysema. The inherited disorder is more deadly than emphysema caused by smoking.

How were you diagnosed?
In 1984, I was 28 years old and had just moved to Alaska with my husband. I had been sick with colds, bronchitis and lung infections for a while, but it wasn’t until I went to my new physician in Alaska that I actually was diagnosed.

After seeing me a few times and prescribing antibiotics that didn’t seem to help, my new doctor told me he had just read an article about a disease and he wanted to test me for it. A simple blood test confirmed that I had alpha-1 antitrypsin deficiency. I was given just 10 years to live.

I started alpha-1 proteinase inhibitor treatments in 1989 after seeing a television news show about the new therapy. I contacted my doctor and started treatments a few months later, when alpha-1 proteinase inhibitor (A1PI) became publicly available for the first time.

In your opinion, how did you beat the odds?
Living in a new state, with a new job, no family or friends nearby and with a husband away working constantly, I could have resigned myself to a limited and short life. Instead, I chose to live the life I wanted, regardless of my grim prognosis. While working full-time, I decided to enroll in college. I was determined to get a better job. At school and at my new job, I made new friends and told them about my illness.

My Alaskan friends promised me that if I lived to be 50, they would come celebrate my birthday with me. And they did it - friends came from all across the country, and we had a wonderful time. I never expected to see this birthday, and my friends were here to share it with me.
I reached this milestone and continue to do well because of four things:

• The treatments with A1PI;
• My doctors;
• A positive attitude; and
• Taking care of myself by exercising.

I am extremely grateful that I never needed a major lung surgery, or any lung-related surgery.

Did you ever experience any issues with access to treatment?
In 2001, while living in Alaska, I was visiting family and friends in Wisconsin. Local area hospitals/clinics that I called did not want to take on the liability of handling my case, while I visited the area. They were not familiar with the disease or the replacement therapy. After several unsuccessful phone calls, I contacted a life-long friend who is an employee of Midlefort Clinic in Barron, Wisconsin and with the help of my friend, I was able to get my infusions there. Whenever I’d come back to Wisconsin in the past, I’d have to double or triple infusions, before I left Alaska. But after a week, I’d have very low levels of protein and it would be very hard on my lungs. 

I’m really grateful to have had the opportunity for local treatment because this ensured a consistent level of protein, which is important in keeping my lungs from further deterioration. Because of my life-long friend, I could travel to Wisconsin to see family and friends without the stress and worries about low levels of protection to my lungs. This was truly a breakthrough for me.

How is your current health?
With A1PI therapy, my health has stabilized and the deterioration of my lungs should now follow the patterns of the normal aging process, as long as I continue with replacement therapy. I receive immunizations for flu and pneumonia to stay healthy. I also receive early treatment for lung infections by seeing my doctor at the first sign of a cold or other lung problem, and I avoid tobacco smoke, noxious fumes, dust and pollution.

After 20 years of living in Alaska, my husband and I took medical retirements and moved back to our home state of Wisconsin in 2003, where we live in the country. We spend our days working in the rock flower gardens, caring for our home and each other, and enjoying our families and friends.

How are you helping to promote A1AD awareness?
Our hope is to raise the awareness by informing the community, physicians and nurses about the symptoms and treatment of A1AD. In 23 years of having A1AD, I have encountered many, many frustrating moments when dealing with doctors and nurses that were not familiar with A1AD. I want to help make things easier for other Alphas.

Since moving back to Wisconsin, I have brought A1AD awareness to the Siren Clinic, which infused me from 2003-2005. In the fall of 2005, I had a port-a-cath implanted and the Cumberland Memorial Hospital trained me in self-infusing, so I can do my own. In February 2006, I helped arrange for a sibling to receive his infusions at Osceola Hospital. In September 2006, I became an A1AD support group leader of the “Wisconsin Alpha Pack,” covering the Northern Lights Region (Northern Wisconsin). Our mission is to offer support to those in the Wisconsin area affected by A1AD bring about awareness in the local community.

What advice do you have for people who may suffer from alpha-1 but have not been diagnosed?
People with asthma, chronic bronchitis or shortness of breath should consider being tested. The screening test consists of taking a blood sample and analyzing it to see if a person lacks the alpha-1 antitrypsin protein.

Understand that this is a rare disease and your physician may have never heard of it or may not know much about it. Many folks go undiagnosed or misdiagnosed and that is why I want to promote community awareness of A1AD. If you can be diagnosed early and take care of yourself, you can live a good life.