Wayne Life After Alpha-1 Diagnosis Melodie Getting the Right Support

Getting the Right Support

Melodie Beck

Melodie Beck was busy planning a wedding when she first noticed the warning signs. “I got married when I was 35,” she says. “Mom and I were out looking for a dress one day, and she said, ‘you are blue around your mouth.’ And so her flags went up before mine.”

Initially, Melodie brushed the symptoms off as pre-wedding jitters, but her problems persisted and became more severe. Soon it became difficult for her to breathe. This marked the beginning of her search for a diagnosis.

“I went to my general practitioner, and he diagnosed me with chronic bronchitis, gave me antibiotics and steroids, and a couple months later I was back in there. I’m like, ‘something’s wrong,’ and I thought I had lung cancer or something serious because I was so sick. Flus and colds just lasted for weeks on end.”

She had already quit smoking and was now showing symptoms of asthma. She went back to the same doctor, who changed his diagnosis to Chronic Obstructive Pulmonary Disease (COPD) with emphysema. Very soon after this, she has a full blown asthma attack and had to call 911 in the wee hours of the night. “Alone in the emergency room, I knew I was in real trouble.”

“I’m like, ‘Something’s wrong,’ and I thought I had lung cancer or something serious because I was so sick. Flus and colds just lasted for weeks on end.”

After consulting with an allergy specialist, Melodie was finally diagnosed with alpha1-antitrypsin deficiency (AATD) with emphysema. Identifying AATD as the cause of her health problems was a long and difficult process. The symptoms of the disorder are the same as COPD, asthma, and emphysema, and as a result, AATD is often misdiagnosed.1

“Within a couple of years I was diagnosed correctly, which is unusual, many Alphas go years and years, seeing many doctors, and so I was very fortunate in that way.”

As an Alpha-1 AATmosphere program member, Melodie enjoys the help and support provided by a team of registered nurses, insurance specialists, and AATmosphere representatives. “I am getting newsletters from them. The education calls that Baxter provides are really good,” says Melodie. “They’ve gotten some really good speakers.”

Melodie has learned to live with her AATD with the help of her friends, family, the AATmosphere program, and a positive attitude. She states. “People say that when bad things happen, there’s always some good that comes out of it, and it’s true. Our family is closer than ever. My advice for others with emphysema and AATD is to ask for help when you need it and the Alpha-1 AATmosphere program is a great place to start.”

Request a complimentary AlphaTest® Kit
If you have symptoms of Alpha-1, it is important to get tested. Baxter offers the complimentary AlphaTest® Kit, which makes testing easy. Getting the right diagnosis is the first step to getting the right care. Order an AlphaTest®

GLASSIA [Alpha1-Proteinase Inhibitor (Human)]

GLASSIA is indicated for chronic augmentation and maintenance therapy in individuals with emphysema due to congenital deficiency of alpha1-proteinase inhibitor (Alpha1-PI), also known as alpha1-antitrypsin (AAT) deficiency.

  • The effect of augmentation therapy with GLASSIA or any Alpha1-PI product on pulmonary exacerbations and on the progression of emphysema in Alpha1-PI deficiency has not been demonstrated in randomized, controlled clinical trials.
  • Clinical data demonstrating the long term effects of chronic augmentation and maintenance therapy of individuals with GLASSIA are not available.
  • GLASSIA is not indicated as therapy for lung disease in patients in whom severe Alpha1-PI deficiency has not been established.

Detailed Important Risk Information for GLASSIA

  • GLASSIA is contraindicated in IgA deficient patients with antibodies against IgA. GLASSIA is contraindicated in individuals with a history of severe immediate hypersensitivity reactions, including anaphylaxis, to Alpha1-PI products.
  • GLASSIA is made from human plasma. It may carry a risk of transmitting infectious agents, such as viruses, and theoretically, the Creutzfeldt-Jakob disease (CJD) agent.
  • Administer GLASSIA at room temperature at a rate not greater than 0.04 mL/kg body weight per minute. If anaphylactic or severe anaphylactoid reactions occur, discontinue the infusion immediately.
  • Administer GLASSIA within 3 hours of entering the vials.
  • Safety and effectiveness in patients over 65 years of age have not been established.
  • Two serious adverse reactions observed on two separate occasions during clinical studies with GLASSIA were cholangitis and exacerbation of chronic obstructive pulmonary disease (COPD).
  • The most common product-related adverse reactions in clinical studies were headache and dizziness.

Please see GLASSIA Full Prescribing Information for full prescribing details.

ARALAST NP [Alpha1-Proteinase Inhibitor (Human)]

ARALAST NP is indicated for chronic augmentation therapy in patients having congenital deficiency of A1-PI with clinically evident emphysema.

  • The effect of augmentation therapy with ARALAST NP on pulmonary exacerbations and on the progression of emphysema in alpha1-antitrypsin deficiency has not been demonstrated in randomized, controlled clinical trials.
  • Clinical data demonstrating the long-term effects of chronic augmentation or replacement therapy of individuals with ARALAST NP or ARALAST are not available.
  • ARALAST NP is not indicated as therapy for lung disease patients in whom congenital A1-PI deficiency has not been established.

Detailed Important Risk Information for ARALAST NP

  • ARALAST NP is contraindicated in IgA deficient patients with antibodies against IgA, due to the risk of severe hypersensitivity.
  • ARALAST NP is derived from pooled human plasma. It may carry a risk of transmitting infectious agents, e.g., viruses and theoretically, the Creutzfeldt-Jakob disease (CJD) agent.
  • The recommended rate of administration (≤0.08 mL/kg/min) should be closely followed and vital signs monitored continuously. If anaphylactic or severe anaphylactoid reactions occur, the infusion should be discontinued immediately.
  • Safety and effectiveness in patients over age 65 years of age have not been established.
  • ARALAST NP should be administered at room temperature within three (3) hours after reconstitution and should be administered alone, without mixing with other agents or diluting solutions.
  • The safety of ARALAST NP was evaluated with ARALAST in a crossover clinical PK comparability study. The most common adverse events deemed related to ARALAST NP included headache and musculoskeletal discomfort. No serious adverse reactions or deaths were reported in the study. In the ARALAST pivotal study, the most common adverse events were headache and somnolence.

Please see ARALAST NP Full Prescribing Information for full prescribing details.

References

  1. American Thoracic Society/European Respiratory Society Statement: Standards for the diagnosis and management of individuals with alpha-1 antitrypsin deficiency. Am J Respir Crit Care Med. 2003;168:818-900.