Cystic Fibrosis and Lindsey

Three days ago my friend, Lindsey died. We met in college. I had always been shy and had just transferred to a new school. Suddenly, I met this group that embraced me as one of their own quickly. I became less shy. And found a nice group of comfort people. By that I mean people who comfort me just by being there. It's a very short list.

Lindsey had CF or Cystic Fibrosis. She was very smart, a biology major, and funny. Josh and I were engaged and while we were in college she got engaged to her longtime boyfriend. He is a really cool guy. I'm glad when she died she was with someone who loved her.

She used to use a breathing machine a couple of times a day to clean out her lungs. She missed class a lot in the winter but got strong grades in the summer. So after graduation she moved to Florida. I hated that she was moving so far. But, was happy she might have a chance to breathe easier more often.

Every once in a while I do a post on medical conditions. The list with links is at the end. I decided to learn more about what Lindsey went through. She spent her whole life struggling to breathe. The one solace I take is that she isn't suffering anymore.

Quotes from the CF Foundation are in red:

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

Symptoms of CF

People with CF can have a variety of symptoms, including:

• 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 in spite of a good appetite
• Frequent greasy, bulky stools or difficulty with bowel movements
• Male infertility

Anything in red is. The link is below.

https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

According to the Cystic Fibrosis Foundation Patient Registry, in the United States:

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

Each day, people with CF complete a combination of the following therapies:

• Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs. Some airway clearance techniques require help from family members, friends, or respiratory therapists. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.
• Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.
• Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins.  

The median predicted survival age is close to 40. Lindsey was 38. I pray research can create tools to make that time period longer in the future. That's the WebMD link below. I was happy to see newborns are screened for CF in every state now.

As tends to happen after college, my group and I moved away. A couple of them were in my wedding. We sometimes see what's going on through facebook. But, with our busy lives, we've mostly lost touch. One of them, the one who told me about Lindsey, said she wants to get together. She's in Long Island and might be able to come when Zach is home for spring break. She said she regrets not keeping in touch. We all tried to. We all wanted to. But, life takes over and it just hasn't happened in many years.

When Zach was 3, he was hospitalized with his first Asthma attack. While diagnosing, I suspect he was tested for CF. We are blessed that it was just Asthma! But, too many suffer with CF. A genetic disease with no cure. I have learned a lot about CF through researching this post. I hope it helps others looking to learn about this disease. Please donate to help fund research. Research that might improve the lives of those suffering.

https://www.mayoclinic.org/diseases-conditions/cystic-fibrosis/symptoms-causes/syc-20353700



Diabetes

http://homewithmommy-fran.blogspot.com/2014/04/diabetesticktickticktick.html

MS (Multiple Sclerosis)

http://homewithmommy-fran.blogspot.com/2013/07/learning-about-multiple-sclerosis.html

Asthma

http://homewithmommy-fran.blogspot.com/2014/01/managing-zachs-asthma.html

GAD, OCD and more:

http://homewithmommy-fran.blogspot.com/2014/08/life-with-ocd-gad-and-pmdd.html

Hydrocephalus

http://homewithmommy-fran.blogspot.com/2015/08/literally-big-headedhydrocephalus.html

Cancer

http://homewithmommy-fran.blogspot.com/2013/05/a-cancer-story.html

Autism:

http://homewithmommy-fran.blogspot.com/2017/04/loving-autism.html

Sensory Processing Disorder:

http://homewithmommy-fran.blogspot.com/2017/03/hard-to-process.html

Deaf and Blind:

http://homewithmommy-fran.blogspot.com/2016/03/the-peace-of-silent-darkness.html


And possibly more.