Pictured left to right: Robert Bouchard and William Bouchard

Robert and William Bouchard share more in common than being identical twins. As adults, the brothers were both diagnosed with Alpha-1 Antitrypsin Deficiency (known also as AAT, AATD, Alpha-1 protease inhibitor deficiency), which is a is a genetic condition that can cause damage to the lungs and/or the liver. Although there is no cure for Alpha-1, some symptoms can be managed with treatment.

Although symptoms can appear early in life, many symptoms surface when a person reaches middle-age, and they can include:

• Shortness of breath
• Chronic cough with sputum (mucus or phlegm) production
• Wheezing
• Reduced exercise ability
• Fatigue or tiredness
• Frequent lung infections like cold or flu

William describes that at age 41, he came to Forks Community Hospital believing that he may be suffering from pneumonia. In Robert’s case, although in good physical shape for his work in the timber industry, including fighting forest fires during summer months, he shared having to stop for a few minutes after only a few steps to catch his breath. Both needed and hoped for answers.

The first to learn of his Alpha-1 diagnosis was William. While at FCH and believing his was a case of pneumonia, one nurses on call asked William to have a look at a screen she had pulled up on a computer and asked him if what he was reading sounded like the range of symptoms he was experiencing. When William replied with an emphatic “yes,” testing confirmed the diagnosis; however, his journey to seek care to manage his symptoms was not over. With a referral in hand, William traveled to Sequim for more answers. “I went to the specialist, and he said that there was no way I had this genetic condition and had me re-tested,” he said. “When it came back that I indeed have Alpha-1, he [the doctor] just walked out and quit.” Returning to Forks, William found a clinical team ready to mobilize and provide the treatment he needed to live the best quality of life possible.

For Robert, his diagnosis came after a call from his brother who shared with him that he had been having difficulty breathing and was diagnosed with Alpha-1. Knowing that he was also living with similar symptoms, Robert went in for testing and the Alpha-1 diagnosis followed. In his case, he was told, “people with numbers as low as his should be on oxygen and possibly in a wheelchair.” Upon his diagnosis, the clinical team at FCH urged him to see a specialist in Seattle where he was told that his years of work requiring physical exertion likely saved his life.

Pictured left to right: Robert Bouchard and William Bouchard

A New Lease on Life with Treatment Closer to Home

Both William and Robert began weekly Prolastin treatments, which is a specific protein infusion treatment that helps to protect both the lungs and liver.

The brothers have been able to receive their weekly infusion treatments at Forks Community Hospital for well over a decade. Aside from being advocates for the Bouchard twins where their health care is concerned, Kelly Thompson, Chief Nurse Officer, shared that the team also moves mountains to help them navigate challenges with insurance, and the costs associated with the critically important and expensive medications. “From dealing with denials to demanding he go elsewhere to receive these medications, the FCH social services department and authorization specialist have worked to ensure each of them can continue to receive care here,” Thompson says.

Now 54 years old, William expressed how grateful he is to FCH for all they’ve done for him. As for Robert, he sums up his feelings about having such an attentive care team with this, “I just want to thank al the nurses and the pharmacy for all they do for me. It really helps when you’ve such kind and caring people to be there for you!”

To learn more about Alpha-1 visit the American Lung Association Website