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Treating and Managing Your Cystic Fibrosis

May 26, 2021 | Paragon Home Infusion
May is Cystic Fibrosis (CF) Awareness Month, a time dedicated to advocating for people diagnosed with CF and contributing to support organizations and research funds. Read the full article to learn more.
Treating Cystic Fibrosis (fb Art)

May is Cystic Fibrosis (CF) Awareness Month, a time dedicated to advocating for people diagnosed with CF and contributing to support organizations and research funds. This month is sponsored by the Cystic Fibrosis Foundation, an organization dedicated to finding a cure for cystic fibrosis and providing all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

 

 

What is Cystic Fibrosis?

 

Cystic fibrosis is a progressive genetic disease that causes persistent lung infections and limits the ability to breathe over time. It can impact the lungs, pancreas, and other organs due to the production of a sticky, thick mucous caused by the body's inability to move chloride (a component of salt) to a cell's surface. Each person's experience with CF is unique and poses different challenges and symptoms.

 

 

What Do People With Cystic Fibrosis Experience?

 

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections, including pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth or weight gain despite a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Male infertility

 

 

How Many People Are Impacted by Cystic Fibrosis?

 

  • More than 30,000 people are living with Cystic Fibrosis (more than 70,000 worldwide)
  • Approximately 1,000 new cases of Cystic Fibrosis are diagnosed each year
  • More than 75 percent of people with Cystic Fibrosis are diagnosed by age 2
  • More than half of the Cystic Fibrosis population is age 18 or older

 

Life with Cystic Fibrosis can be challenging and taxing on a person. It impacts individuals differently based on factors such as their age or lifestyle. Our heart is to bring comfort to infusion care and simplify the healthcare process for the patients we serve regardless of their stage in life. Since each person’s health situation is unique, we focus on customizing each care plan to meet the needs and lifestyle of the individual.

 

At Paragon, our nurses are experienced in cystic fibrosis management and trained to maximize therapy outcomes. Whether the patient is an adult, a teen transitioning to adulthood, or a child with CF, Paragon is here to help by providing education and clinical resources. We work directly with the patient and their parents, family, or caregiver. Our team of pharmacists and registered dietitians can collaborate with the CF Care Center physicians and teams every step of the way. 

 

We simplify infusion administration by using Elastomeric Devices to deliver anti-infective medication through an intravenous (IV) line. These pumps are small, lightweight, and portable. They can be carried in a pouch or even sometimes a pocket. They hold the medication in a balloon-like chamber that delivers the medicine at a safe and steady rate without the need for gravity (meaning no IV poles), mechanical pumps, batteries, or programming.

 

Elastomeric Devices are the preferred administration method by physicians, patients, and nurses. We use them with our patients because they are easy to learn how to use, which increases therapy compliance. Our nurses are compassionate and patient, taking the time to ensure each patient is comfortable administering their medication independently at home. Each of our nurses serves as a clinical resource and can answer questions about the drug, treatment, infusion pumps, and more. We also have a pharmacist on-call 24/7 to provide assistance or answer any questions a patient may have.

 

 

Tips for Managing Your Cystic Fibrosis:

 

Be proactive with your treatment. Stick to the regimen outlined by your physician and communicate about what seems to be working. If necessary, talk with your doctor about exploring different treatment options.

 

Focus on your overall health and well-being. It is important to not only focus on the symptoms you are experiencing but your overall health too. Develop a plan of action with your doctor to eat healthily and stay active.

 

Get connected with local support groups. Being able to share your story, have access to community resources, and build relationships with other people with your condition is important to managing your mental and emotional health too.

 

If you or a loved one are seeking a healthcare company that puts people first, focusing on comfort and specializing in infusion care in the home setting, tell your provider that you want to join the Paragon family. We’ll handle the rest of the referral process and reach out to you directly to follow up.

 

For more information about Paragon Home Infusion Therapy, visit our Home Infusion Therapy page.

 

 

Additional Resources:

 

American Lung Association – An organization working to save lives by improving health and preventing lung disease through research, education, and advocacy. They focus on four initiatives: defeating lung cancer, championing clean air for all, improving the quality of life for those with lung disease and their families, and creating a tobacco-free future. https://www.lung.org/lung-health-diseases/lung-disease-lookup/cystic-fibrosis/symptoms-diagnosis

 

Cystic Fibrosis Foundation – Dedicated to improving the daily lives of people with Cystic Fibrosis. They help people with affording care, finding a specialist, and staying healthy with Cystic Fibrosis. https://www.cff.org/Life-With-CF/Daily-Life/Adult-Guide-to-CF.pdf

 

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The Paragon Healthcare, Inc. blog provides general information and discussions about health and related subjects. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment. If you or someone you know has a medical concern, you should consult with your health care provider or seek professional medical treatment. Never disregard professional medical advice or delay in seeking professional treatment because of something that you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately. The opinions and views expressed on this blog and website have no relation to those of any academic, hospital, health practice, or other institution.
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